Patient letters on RLS symptoms and remedies- Page 101

Sent: Tuesday, May 08, 2012 11:08 AM
Subject: RLS post pregnancy, and treatments while nursing


I'm a 28 year old female. I've had these same symptoms since I can remember ( the feeling similar to crawling under my skin and in my bones, it's so hard to describe) but with my last pregnancy it got so bad I was crying every night and couldn't sleep. I told my doctor and she told me there was nothing I could take to help, and I just needed to wait it out. Which was horrible- I don't want anymore children because of the months of misery it caused me. Since my daughter was born it still bothers me more than it did prior to pregnancy. I have to nurse standing up and can't sleep except for in increments throughout the night.

Since I've had this problem I've described it to people and they've given me things to see if it helps (over many years I mean) I've tried Xanax and Klonopin and both of those seem to make it worse and make me feel awful on top of it. I've tried iron supplements and those didn't help. Potassium, exercise, quit smoking, quit drinking coffee, none of it helped. The only thing that did help was a prescription I got when I went to urgent care a couple months ago because I pulled a muscle in my neck.

The doctor gave me muscle relaxants and codeine for pain and I slept like a baby! The problem is I'm already embarrassed to talk to a doctor about this especially since my maternity physician was so rude about it, and I'm worried about what helped because I don't want him to think I'm just looking for drugs if I tell him. I worked in a hospital and it seems like that's what they thought about everyone. Is there a way to approach things so I wont give the wrong impression? I don't really just want codeine and muscle relaxants that seems a bit extreme but something similar and less strong, also something I can take and still nurse my daughter. I just want to get some rest I'm starting to look pretty terrible and feel terrible on top of it.

Melissa L.

Medical Reply

The problem with RLS is that most physicians know very little about the disease or how much suffering it can cause. Most physicians know a little about treating patients who are not pregnant or breast feeding and have a simple case since we now have 3 FDA approved drugs. Klonopin and Xanax, although often recommended for RLS do not treat RLS symptoms but rather just help RLS patients fall asleep (similar to a Valium like sleeping pill). Most of the other things that you have tried typically help minimally or not at all. Iron pills may be helpful (depending upon your serum ferritin level) but they can take several months or longer to help.

There is reasonable treatment for pregnant RLS patients which would make your pregnancy much more tolerable so that you would not mind having more children. However, most OB doctors have no clue (nor do they want to) on how to treat this problem.

Breast feeding is a tough issue as the dopamine agonists (Mirapex, Requip, Neupro) all decrease the flow of breast milk. Horizant (same for gabapentin and Lyrica) are secreted in the breast milk and would be a problem for your child. The only drug that may considered is methadone (obviously in the same class of opioids as codeine) which is actually safer for breast feeding children (as not much gets into the milk) compared to other opioids like codeine. However, we would rather not give methadone unless really stuck so it is generally advised to give up breast feeding or suffer from the RLS symptoms.

A Reply from Melissa

Sent: Wednesday, May 09, 2012 1:16 PM
Subject: Re: RLS post pregnancy, and treatments while nursing

I am scheduled to see a physician on Friday to talk about what my best option is, although I'm pensive about discussing it still as I've not been taken seriously in the past, and really treated pretty rudely. It's nice to know there are things one can take while pregnant because I do want more children. I was also wondering whether dependency can be a result of some of these medications and if there is a way to avoid this, because even if turns out there is nothing I can do while nursing, once my daughter is weaned I will certainly pursue some relief!

Melissa L.

Medical Reply

Dependency tends to be an issue only with the opioids. However, if prescribed correctly and monitored closely, this should happen very rarely to RLS patients (unless they have a history of drug abuse in the past). With the medications available these days, most patients should achieve excellent control of their RLS symptoms under proper care (and finding proper care may be the only major stumbling block).

Sent: Wednesday, May 09, 2012 5:06 PM
Subject: Help with my RLS

I've suffered from Restless leg syndrome since the age of 8 I remember as a child putting my arms over the side of the bed pulling the side and no doubt as most parents would think that it was growing pains ,

Since the my RLS has steadily got worst over the years and having tried everything that's going with failure seems I become immune after a short while , my question is when RLS is at it's worst in my legs it seems to affect my walking and sends what feels like an electric shock up my back when it's bad in my arms it affects my speech and concentration and coordination is this a common thing to happen ? It's getting to the point where I have RLS 24/7 some weeks I'll sleep 9 hours some a little more and yet rather than be lifeless the next day I'm actually hyperactive which even myself find strange ,

I've yet to find a Doctor that understands my problem or even knows what RLS is and I'm at the end of my tether as I don't know if there's anything new on the market that helps.

Sal

Medical Reply

RLS can occur anywhere in the body when it becomes severe. It typically does not cause muscle weakness or cause trouble walking but if the symptoms are very severe, you might be having issues with being distracted due to the severe symptoms and that possibly could affect your walking. This would also explain the problem with speech and of course concentration (that is a very common symptom in RLS patients).

From your description, it sounds as if your RLS may have gotten worse from taking a dopamine agonist like Mirapex (pramipexole) or Requip (ropinirole). This is called augmentation and its treatment requires an RLS expert who knows what to do in this situation.

In any case, if you find a good RLS doctor (that can be difficult), you should get excellent relief and get back to living a normal life.

Sent: Thursday, May 10, 2012 10:45 AM
Subject: safest highest level of Ferritin?

I had 3 iron infusions done 2 years ago. Brought my level from 12 to 152. What is TOO HIGH for a Ferritin level? I know we like people with RLS to have at least 50. So, what does "at least 50 mean?" as far as what is the highest level before it can actually be too high or dangerous, keeping in mind we are all different in how we store iron.

Donna

Medical Reply

Optimum ferritin levels are 30-300 mcg/ml for men and 15-200 mcg/ml for women. Therefore, levels higher than that are considered abnormal. Dangerous levels are over 500 mcg/ml as iron can then be deposited into tissues such as the liver or pancreas and cause organ damage. Many patients with hemosiderosis (iron overload due to genetic problems or too much iron therapy) have levels over 1000 mcg/ml or even over 2000 mcg/ml. It is very difficult to raise ferritin levels to dangerous levels with oral iron but this obviously can happen with IV iron. Typically, the serum ferritin levels are brought over 200 mcg/ml with IV iron therapy.

The 45-50 mcg/ml levels were from an old study but a more recent study demonstrated benefits for patient with ferritin levels below 75 mcg/ml that had oral iron therapy.

Sent: Saturday, May 12, 2012 7:45 AM
Subject: Mirapexin (pramipexole or Mirapex here in the USA)

Could you tell me the highest dose of Mirapexin Prolonged Release, that is recommended for Restless Leg Syndrome.

Jean S.

Medical Reply

Mirapex (Mirapexin) ER is not recommended for RLS as it has never been studied for that disease. Some doctors do use the medication to treat severe RLS cases but they should be careful as the smallest dose of Mirapex ER is .375 mg and currently we experts recommend keeping the total daily dose of Mirapex (whatever form) under .25 mg/day (even though previous approved recommendations have allowed up to .75 mg/day but over the long run, these may cause trouble). The next highest dose of Mirapex ER is .75 mg which as noted above is much higher than I would suggest using currently.

Sent: Monday, May 14, 2012 9:19 AM
Subject: RLS question
 
I am a 35 year old male. A few years ago I began waking in the middle of the night with RLS symptoms. It wasn't a nightly occurrence. If I couldn't fall back asleep I would take 0.25 mg of Xanax that had been prescribed for an unrelated reason. Over time, the awakenings became more frequent. Recently 0.25 mg of Xanax wasn't enough and I began taking the whole 0.5 mg pill. I went to see a neurologist because I was running out of Xanax and owed it to myself to receive a proper diagnosis. My neurologist agreed that I have RLS.

The fact that my father suffers from it assisted in the diagnosis. The doctor prescribed 0.25 mg of Requip 1 to 3 hours before bedtime. That worked for about 7 weeks and then I began waking up again and couldn't go back to sleep. My neurologist then increased my dose to 0.5 mg. That was one week ago. Since the increase I have begun to experience RLS sensations at other times of the day, sometimes early in the morning. The new dosage also makes my leg feel worse during the 1 to 3 hours before bedtime. Again, I never had any symptoms during waking hours until I started taking the Requip 2 months ago. T

his sounds to me like the augmentation phenomenon I've read about. Do you agree? For what it's worth, my symptoms are only in my right leg. What would you recommend my next step be?
 
Jason
Weston, FL 

Medical Reply

It does sound as if you are developing augmentation. Usually, after increasing the dose of the dopamine agonist (Requip), the RLS calms down for a few weeks or months. The worsening that you are experiencing indicates that you may be developing an accelerated type of augmentation which has to potential to spiral out of control if you keep increasing the Requip dose.
 
Most experts would suggest stopping the Requip and substituting a potent opioid (methadone, oxycodone) as the RLS will worsen markedly for a few weeks or months after stopping the Requip.   After a few weeks, the dose of the opioid can be reduced and a drug like Horizant may then be helpful to reduce or eliminate the opioid.

A Reply from Jason

Sent: Thursday, May 17, 2012 8:22 AM
Subject: Re: RLS question

If you would allow me one more question regarding my father who also suffers from RLS.

He began Requip in 2005 at 0.25 mg each night. Over the next 6 years, as his symptoms increased, his neurologist gradually increased his dose to 4 mg (1 mg four times a day). One year ago he had spinal fusion surgery which exacerbated his RLS symptoms and his dosage has now doubled to 8 mg (2 mg four times a day). He has been stable for one year but I worry about the amount of Requip he takes. If he accidentally misses a dose his symptoms are horrendous.

Would you recommend a particular course of action for him?

Jason

Medical Reply

Requip at 8 mg per day is a large dose. In the old days (like 5-10 years ago), we were more cavalier about using high doses of dopamine agonists but we now know that the likelihood of augmentation increases with higher doses. Typically, patients like your father end up on higher doses because they have augmentation. I would be willing to bet that your father does indeed have augmentation due to the withdrawal symptoms when off Requip, his high dose and his need for 4 doses per day.

As discussed below, it is very difficult to get off a dopamine agonist (although that is the basic treatment) as the symptoms will be even worse than missing a few doses. It does take special expertise but you may be able to find someone closer than me. If not, I would be happy to see him (I actually have seen several patients from Florida and farther already).

Sent: Tuesday, May 15, 2012 1:38 PM
Subject: Daughter with Severe insomnia, RLS/periodic limb movement d/o

My daughter, age 17, has had severe insomnia, RLS, and migraines. In trying to manage the RLS aspect of her illness, her doctor tested her initial ferritin level 2 months ago was 25. The initial recommendation was that she take 44 mg of iron/day with 500 mg Vit. C. She has now taken 2 months of a total of 41.5 mg of iron daily (1/2 Feosol tablet +18mg from multivitamin with iron tablet) + an additional 500mg Vit. C. I didn't want to give her too much iron with the full Feosol pill daily. Her recent ferritin level was only a few points higher. Her sleep specialist wants a ferritin level of at least 50 and her internist recommended that I switch brands of iron, from Feosol to a supplement with 2 kinds of iron: PIC and Heme. I chose Bifera which has 22 mg PIC and 6 mg HIP, totaling 28 mg/day.

I don't know how much iron she should ideally be taking at this point or how long it might take for her ferritin to improve substantially. She is 5'8", 150#.

Holly H.

Medical Reply

We typically recommend ferrous sulfate at 325 mg (65 mg of elemental iron which is the number you are using) three times daily, 1-2 hours before meals with 100-200 mg (500 mg is a pretty high dose) of Vitamin C (some orange juice would also work well). There are some higher potency oral iron preparations like Niferex that contain 150 mg of elemental iron (which is over 3 times what your daughter is currently taking). Furthermore, there is fairly good absorption of iron at low serum ferritin levels (20-30% with ferritin levels <5 mcg/l) but this markedly decreases with higher serum ferritin levels (2% with ferritin levels of 60-80 mcg/l). Therefore, it is often hard to raise the serum ferritin levels to desired levels with oral iron.

The goal for serum ferritin has recently changed to 75 mcg/l (based on a 2009 study) from the previous level of 45-50.

Sent: Tuesday, May 15, 2012 6:52 PM
Subject: Depression

What can I take for a terrible bout of depression that won't affect the RLS which has been in remission for a long time? I don't take any other medications except .25 mg of Klonopin a few nights a week.
I've been experiencing terrible anxiety for a few years which has now turned into a downward spiral of depression.

I know that most anti-depressants affect RLS but Wellbutrin gives me anxiety. Maybe I could take Wellbutrin along with Klonopin?

Diana

Medical Reply

Although Klonopin is used extensively by psychiatrists and general doctors, it has a very long half-life of over 40 hours and even when you take it only 3-4 nights per week, it may be around most of the time. This drug is a sedative (similar to sleeping pills) and has been known to worsen depression (so be careful and you may want to consider the use of benzodiazepines with shorter half-lives like Xanax or Ativan).

Wellbutrin is the only major depression drug that is safe for RLS. Trazodone is also RLS friendly but it is not very effective for most patient’s depression (it does help sleep but tolerance often occurs). However, clinical experience suggests that the older secondary amine tricyclic antidepressants (desipramine, nortriptyline) may have less of an effect on RLS.

Sent: Thursday, May 17, 2012 6:12 AM
Subject: Medicine that stops working

I am 43 years old have been diagnosed with PLMD for close to two years now. However, I would venture to say that I have had it for probably ten years or so. Since diagnosis I have been on many medications to treat my problem. Some have worked while others have failed. My biggest issue is while I have encountered some medications that have worked initially, after a month or two they stop working. Dosages have been increased and it appears that my body quickly adjusts and the medicine no longer works. Why is this happening? What can be done to address this issue?

Lori R.

Medical Reply

Your question is a hard one to answer as the treatment of PLMD is quite controversial. Many sleep/RLS experts feel that this is an entity that does not need treatment (however, others do believe it needs treatment). Part of the problem is how the PLMD is diagnosed and do the PLM occur with or without arousals and how many occur per hour (of each type). Some medications promote PLM and it is also associated with other conditions.

The only way to monitor how the PLM are being treated is with a sleep study or home actigraphy (ankle monitor that records leg movements). Otherwise, how can you really tell if the PLM are worse, the same or better?

Without knowing the complete details discussed above and the drugs and dosages/timing, it would be impossible to answer your question (and that type of detailed question and answer is beyond the scope of this email service).

A Reply from Jason

Sent: Thursday, May 17, 2012 8:14 PM
Subject: Re: Medicine that stops working

Thank you for the quick response to my question. I do understand that there are so many variables that it is tricky for you to give me an answer. My primary care dr. has been treating me, do you think it would benefit me to see a neurologist?

I was diagnosed with PLMD from a sleep study and I had approximately 16 arousals per hour. My only issue that I suffer from because of the PLMD is pure exhaustion.

Lori R.

Medical Reply

16 PLM arousals per hour is actually considered a mild degree of PLM. The problem here is that it is very likely that the PLM may have nothing to do with your exhaustion. That may also explain why you have such a variable response to medication as they may really have done very little other than a placebo effect.

You should see a neurologist who is also a sleep specialist (and likely a movement disorder specialist) who is knowledgeable in RLS. There are not so many of them around (despite what they may claim) so choose carefully.

Sent: Friday, May 18, 2012 11:41 AM
Subject: RLS

I just found your post on the internet and found it quite informative.

I was diagnosed with RLS about 10 years ago. The doctor prescribed Requip. That worked for probably 7 years. About three years ago, Requip did not seem to be working and my new doctor prescribed Mirapex. It has worked fairly well. However, I have been having severe leg swelling. I have been from doctor to doctor and they told me it was a leaking in the veins (lymphedema). When I questioned about it, they stated it normally happens to people who have had chemo, traumatic injury to the legs or surgery, not of which I have had. Doing a search on the internet I found severe leg swelling can be caused by Mirapex. This freaked me out. Is the damage permanent if I stop the Mirapex?

I cannot go without med's for RLS, it is too severe. The doctor is now prescribing Lorazepam. From what I read about it, it's more for anxiety.

Charlotte W.

Medical Reply

Although Mirapex can cause swelling of the legs, that is a very uncommon side effect. It is more likely that your problem is due to varicose veins (which could be due to chemotherapy or just occur naturally).

In any event, even if the swelling of your ankles was caused by Mirapex, no permanent damage would result and just stopping the medication would make it go away.

Lorazepam is most definitely NOT an RLS drug. It is an anti-anxiety drug but may also be used to help RLS patients fall asleep (just like treating a back pain patient on a sleeping pill if the back pain interferes with sleep). Shorter acting sleeping pills like Ambien or Lunesta are preferred but the more appropriate solution would be to jut treat the RLS effectively so that a sleeping pill is not needed.

Sent: Tuesday, May 22, 2012 1:17 AM
Subject: Severe RLS problems

I have severe RLS and at this time take Ropinirole 3-4 mg per day. Two months ago I had total hip replacement surgery and found the RLS symptoms much worse in the following 5-6 weeks after the surgery. The leg had become quite swollen and I assume was the reason for the RLS to worsen. In order to tolerate the pain and discomforts, I would take up to 6 mg of Ropinirole per day. This resulted in very unpleasant side effects and I now seem to be quite allergic to this medication. My doctor has prescribed Levodopa/Carbidopa, 100/25 mg.

However, I took Levodopa for 10 years when it stopped working for me and it really does not work very well for me now even with the combination mentioned.

My question is: can I combine the two medications, Ropinirole and Levodopa/Carbidopa? Take them alternately? I feel very desperate. My doctor does not seem very interested in the RLS, or how to change the medication, but has suggested that I visit a Sleep Clinic instead, which I will do but it takes months! In the meantime I'm searching for an answer to my immediate problem.

Rohanna R.

Medical Reply

You clearly need to see an RLS specialist which may be a sleep specialist or neurologist who is familiar with tougher RLS cases. The problem with Sinemet (levodopa/carbidopa) when it seems to stop working is called augmentation of RLS which is really a worsening of the RLS caused by taking a dopamine related drug. That is also what seems to be happening to you with the ropinirole.

The treatment for augmentation is to get off the dopamine drug. However, this markedly worsens the RLS for a few weeks or months and typically requires a potent opioid to treat the exacerbated RLS symptoms. Unless you see a very good RLS specialist, you will likely not get the treatment that you need. With proper care, you should do very well.

The other problem that you have is that Canadian doctors are extremely reluctant to prescribe opioids. You will also need more intensive monitoring and treatment for a few months which can be difficult as an outpatient in the Canadian medical system.

A Reply from Rohanna

Sent: Thursday, May 24, 2012 4:13 AM
Subject: Severe RLS problems

Thank you very much for your kind and helpful answer. Your letter was very reassuring. I have printed it out and shown it to my husband and daughters. They clearly appreciated getting a better understanding of the RLS, which in turn helped me as well! It is really difficult, I find, to get the message across, just how extremely frustrating this condition is!

Yesterday I went to a "walk in clinic", hoping to find a doctor who would prescribe a strong opioid, as I have not slept for several nights now due to negative reactions to ropinirole and levodopa. This doctor prescribed temazepam. Looking forward to perhaps getting some sleep this medication backfired on me, "attacked" my legs within 10 min, making the RLS worth than ever! I was in agony for hours until I took 2 ropinirole, not caring about consequences. An allergic reaction occurred but that was better than the extreme restless legs.

In a few days I'll see my regular doctor, hoping to persuade him to give me something else. Perhaps clonazepam? I'll bring the printed version of your informative e-mail and hope he'll understand the problem! May I ask, are you a neurologist?

Rohanna R.

Medical Reply

Clonazepam is just a longer acting temazepam and does not help RLS symptoms but rather just helps RLS patients sleep (but has a 40 hour half-life so causes next day sedation very often).

A Reply from Rohanna

Sent: Monday, June 04, 2012 6:20 AM
Subject: Severe RLS problems

It is important for me to write and let you know what happened after I received your helpful letter. It actually changed my life overnight! Up until that day, my doctor would not change the medication I was on (Ropinirole) but insisted that I go to a sleep clinic instead, which will take several months before I'll get in.

After hip surgery a few months ago, the RLS got so bad that I needed to take between 4-6mg Ropinirole pr day to control the RLS and the pain in my leg. Consequently I reacted to the medication and asked my doctor several times to change it. When the symptoms got "unbearable" I wrote to you for help, and feel so fortunate that you wrote back with an answer! I printed out the letter I wrote to you along with your answer and gave it to my family to read.

Three of my daughters now wanted to come along on my next visit to the doctor! The appointment was almost immediate and one of the daughters came with me. As soon as the doctor saw her sitting there next to me his whole demeanor changed and I could tell right away that he now was open to my suggestions. He then wrote out a prescription for Mirapex, the medication I had asked for before.

The very next day, after taking Mirapex, I started to feel completely different and "normal" again. Looking back, it seems so incredible that I had to be driven to the point of despair before I got any help. And clearly the help came from you and I really do thank you so much for being there with a caring answer! Thank you!

Rohanna R.

PS: At the age of 73 now, it feels rather scary to think that I may be entering a stage in my life when I'm not worth listening to by certain doctors. The thought had not occurred to me before but it sure does now! Age has much to do with it.

Medical Reply

It is great to hear that you are doing better. If you do start to have trouble with Mirapex (which might happen but keeping the dose low typically helps prevent that from happening), there are still lots of alternatives.

I am not sure age has that much to do with but rather having an extra observer in the room definitely gets most doctor’s attention. When you are alone, just remember to be more aggressive and persistent. The squeaky wheel does get the oil more readily than the quiet one.

Sent: Monday, June 04, 2012 8:01 AM
Subject: Advice regarding tapering from medications prescribed for acute RLS

I am a 66 year old woman who has been treated for RLS for the past 20+ years. My current physician is a pulmonologist who also treated sleep disorders. For the past several years I was prescribed and doing well with hydrocodone (5/500 nightly), clonazepam (2 mg/day) and carb/levo ER 50/200 nightly). Two years ago my pulmonologist decided he did not want to treat me for RLS and referred me to a neurologist. My neurologist prescribed gabapentin (1,200 mg nightly) as I could not tolerate the Mirapex he first prescribed. I continued the Sinemet ER 50/200. My pulmonologist then discontinued the hydrocodone and in December of last year decided I no longer needed to take the clonazepam and should taper from 2 mg to 1.5 mg/day and then to 0 mg He suggested that I no longer needed the med now that I am a retiree. I could not taper and he referred me to a psychiatric nurse in our area. She realizes that after 20 years on this drug it will be difficult to taper and may take many months and is allowing me to shave off whatever I am able to manage.

I recently asked my neurologist if I could try the hydrocodone again for only one week as it worked so well for me and that I never became addicted to it having taken the same amount for several years and having discontinued it without any withdrawal symptoms. His office called me and told me that he stated that he would absolutely not prescribe narcotics. I note that several years ago after a major surgery I was given hydrocodone for pain for several days during which time I experienced no RLS symptoms.

I have been a contributing member of the RLS Foundation for several years and read the newsletter regularly. I am well aware of the pharmacological treatments for RLS and that opioids are a group sometimes used for refractory RLS. Also, I have read that clonazepam was prescribed many years ago in combination with Sinemet before the advent of the newer drugs and treatments and that they are currently being prescribed by some physicians.

I do not concur with my pulmonologist that I need to taper the 2 mg of Klonopin after 20+ years and never having increased that dosage and because it works well for me. Also, I do not concur with my neurologist regarding his denial of a trial on the hydrocodone (or another opioid). He recently tried a drug holiday for me reducing the Sinemet by .25 mg and the gabapentin to 900 mg That holiday was short lived as my legs would not stay still and I could not stay in bed, just got up and read into the wee hours. Of late I am having restless nights just thinking about the tapers and the meds I need to carry on with my life with my husband. We’d like to travel but I can’t commit to a holiday unless my RLS is treated with the meds I require.

Katherine

Medical Reply

You have clearly figured out that you need to see a doctor who knows more about treating RLS then do your current doctors. Sinemet is rarely used for daily RLS symptoms as the incidence of augmentation is extremely high. Clonazepam is another drug that really should not be used for RLS due to its long half-life (which tends to cause next day sedation) and the tolerance/dependence problems (that make it so difficult to get off the drug). You likely would be better off the drug and if your RLS was well controlled (which should be very easy to accomplish under the care of a physician who really knows how to treat more difficult RLS patients), it would likely be so much simpler to taper off the clonazepam.

Opioids are certainly a reasonable choice to treat your RLS but there are lots of other choices. We typically don’t use hydrocodone since it is always combined with acetomenophen or ibuprofen (and those additive drugs don’t help RLS so can only cause side effects without possible benefits). The new drug Neupro should be available in the next month or so (I already have access for early use of this drug) and might work well for you. Horizant (which delivers gabapentin much more effectively and safely then regular gabapentin) is another good choice.

Sent: Friday, June 08, 2012 6:57 AM
Subject: Mirapex side affects

I was on Requip for 5 years for RLS, slowly increasing the dosage until I was taking 2 mg each evening, but only getting relief about half the time. My doctor suggested a holiday from Requip and put me on Mirapex. Mirapex works great for the RLS, but I seem to get headaches more frequently and even worse, my knees started swelling and its hard to get out of bed in the morning because they are painful and weak. I'm 51, but the only lifestyle change I made when this began to occur was switching to Mirapex. I used to walk and exercise 4-5 times per week and now when I do, I feel like an old woman the next day. I've decided after 4 months of this to go back to the Requip, which I tolerated well, but built up some resistance to over time.

How quickly can I switch back, and if I ended back at 2mgs is that considered a high dosage. What is a high dose of Requip for RLS?

Cindy

Medical Reply

We used to consider a high dose of Requip as doses above 4-6 mg/day. However, we now like to keep the dose of Requip at a maximum of 1 mg. The reasons for this is that tolerance or augmentation (either of which may explain why your current dose no longer is working) becomes more common at higher doses.

You may want to consider a change to Horizant or even using a smaller dose of Requip (like 1 mg or less) with the Horizant.

Sent: Saturday, June 09, 2012 3:38 PM
Subject: PLMD and RLS

I am a 68 year old man and was diagnosed with PLMD but not RLS about 10 ten years ago, based on a sleep study. My legs were moving about 30+ times a minute and I was experiencing less than an hour of REM sleep. This explained my chronic fatigue during the day and the urge to just doze off when driving to work. I was put on .25 mg of Mirapex at bedtime. Things seemed fine for quite a while. In the past several years my dosage was increased to .50mg and I was placed on Lunesta due to sleep issues. In the past two years I began experiencing sensations in my legs at bedtime that have recently started becoming evident in the evening as well. When I started Medicare I was unable to remain on Lunesta and have tried other medications including the generic Ambien.

I am currently taking .125 mg of pramipexole in the morning and .50 mg two hours before bedtime (based the many comments you have made on your web site). I also take 30mg of Temazepam an hour before bedtime. It can still take me up to 2 hours to finally fall asleep after getting in bed, often only to be up by 5 AM, or so, and unable to go back to sleep. I have worn through socks, worn out sheets in the area by my feet, and would really like to sleep 8 hours or so a night (which does still happen once in a while).

I am also taking 50 mg of metoprolol  at breakfast and dinner for blood pressure, 10 mg of Lisinopril at dinner (also blood pressure), 5 mg of finastride for BPH (dinner), and I use non-prescription fexofenadine 180 mg at breakfast for allergies. Other non-prescription medications include a 1200 mg fish oil capsule and multi-vitamin at breakfast. I recently also was taken off Lipitor and started on two 81.5 mg aspirin and a 500 mg slow release Niacin (as Nicotinic Acid) tablet an hour later. I usually take these at night between dinner and bedtime, sometimes close to the dose of pramipexole. I tried Requip for two days, had headaches and leg cramps, did to sleep more than hour or so, and went back to pramipexole (this was earlier this week). I'd really like to get in bed and sleep like a normal person.

Peter

Medical Reply

It sounds as if you started out with PLMD (I assume you mean you had
30 leg kicks/hour, not per minute) and since being treated with Mirapex, this has turned into RLS. That is actually something that happens reasonably often. However, we have to be careful when increasing the dose of Mirapex once that happens as augmentation (worsening of RLS from taking Mirapex) is also a common occurrence.

Resolving that problem is clearly difficult as you have already found out. You may have to switch to another class of RLS drug like Horizant but that may cause a temporary worsening of your RLS problems. This can be handled easily with opioids but most doctors don't know how to accomplish that task.

You should problem see a sleep specialist or neurologist who is experienced in treating difficult RLS cases (beware that many doctors will make that claim but few actually will be up to that task).

A Reply from Peter

Sent: Sunday, June 10, 2012 10:54 AM
Subject: Re: PLMD and RLS

I would agree that I have developed RLS and that it is getting worse due to the augmentation issue you describe. It's also clear that stopping the pramipexole is going to be a problem, so is there a danger in taking .625 mg of pramipexole at night for a short time in order to find a medical professional who is experienced in helping with these types of issues? Also, are there options for people who have a drug plan that does not cover Horizant in its formulary (or can doctors document a case for allowing it due to problems with pramipexole)?

Seems to me that this will all take time and I still need to sleep between now and then, would taking hydrocodone 10-325 at bedtime help with the sleeping or cause other issues while seeking a solution to this problem?

Peter

Medical Reply

On the short term increasing the pramipexole shouldn't cause much problems but over a few months (or weeks if you are unlucky), it may add fuel to the fire of augmentation. Hydrocodone is also fine for the short term but as it contains acetaminophen (which does not help RLS), we do not suggest using this drug regularly for RLS in the long term.

Horizant may need a prior authorization but if you have not done well on pramipexole (and by extension with ropinirole if augmentation is the issue), the insurance company must approve Horizant as it is the only other FDA approved RLS drug.

Sent: Thursday, June 14, 2012 3:35 PM
Subject: RLS and lumbar steroid epidural

I have a bulged disk in my lower spine and it has pinched a nerve causing my toes to curl on my left foot, making it terribly difficult to even walk. It’s been suggested that I have a steroid epidural. Going from past experience, when I tried to take Medrol Dose Pack in the past (for sinus infection) it caused my RLS to worsen noticeably until I stopped taking the steroid. Will I have problems with the epidural?

I could stop taking the pills, but once the injection is in my spine, there’s no taking it back out. I feel the specialist is brushing off my concerns because he’s “never had a problem in the past” but he has no idea the severity of my RLS. Maybe I’m over-reacting? I just don’t want to make a decision that I regret terribly.

Brenda

Medical Reply

It is difficult to completely answer your question as your reaction to Medrol is very atypical in that steroids are not known to worsen RLS. I often give steroids to my RLS patients (since I am also a pulmonary specialist who prescribes steroids for asthma frequently) and have never seen an effect on RLS with this class of drug.

Therefore, it is very unpredictable whether a steroid injection into your spine will worsen your RLS. Although only a small percentage of the epidural steroid reaches the blood stream, they typically use a potent steroid and even a small percentage could result in some system wide steroid effects. However, unfortunately, you will really not know what the epidural steroid injection will do to your RLS until after you get the injection.

Sent: Saturday, June 16, 2012 1:13 AM
Subject: RLS not managed well by my doctors/Kaiser system

I have had RLS for as long as I can remember. When I was a child I was constantly admonished for “jiggling” my legs at the table. it drove everyone crazy, but no matter how hard I tried I could never stop myself. Over the years it has progressively gotten worse, and I am at the point now where I just cry at night because I am so frustrated and I feel like nobody will listen.

I’ve had the symptoms of RLS for a very long time, but they had always been manageable. Around October of 2010 I started to feel like I just couldn’t handle the feeling in my legs anymore, and as RLS runs in my family, I knew what was wrong so I decided to do some research online about what I could do at home to treat it. I tried absolutely everything I could find. Vitamins, calcium, magnesium, massage with magnesium oil, heat/ice, potassium, over the counter pain relievers, I even put a bar of soap at the end of my bed (wives tale I found), and nothing worked. When I felt I had exhausted all of the options I could do for myself, I made an appointment with my doctor.

The doctor put me on 25 mg Sinemet. And I tried that for about two months. I hated it. It made me nauseous (even with food), and I felt like it made my daytime RLS a million times worse. I never got a chance to try a new medication, because the beginning of March 2011, I found out I was pregnant. I went to my regular doctor about two months after I had delivered to talk about my legs. He told me that since I was breastfeeding that there was really nothing I can do or take, and to come back after I had stopped breastfeeding.

My son is now 6 moths old, and I am no longer breastfeeding. I am no longer employed by the same company, so I had to switch my healthcare to Kaiser Permanente. I made an appointment with my new doctor to talk about my RLS to see if there was something else I could try to get it under control. When I told her about my problem, she just looked at me and said “you’re too young,” in a dismissive tone. (I’m 20 years old, which is younger than most people who complain of this disorder, I know.) I told her that just because I am younger doesn’t mean I do not have restless legs. She told me to go down to the lab and get some blood work done.

A couple days later she got the results of my CBC and ferritin and emailed me and told me that everything was normal and that I do not have restless legs. I emailed her and told her that low iron was not the only way to determine restless legs, and asked her if there was anything that she could do for me. I never heard back. She has studiously ignored every email that I have sent her since.

I am just so frustrated! I tried to make an appointment with a neurologist and sleep specialist, but they both said that they can’t schedule an appointment without a referral from my regular doctor. I tried to switch doctors, and they told me that all of the general care doctors were not accepting new patients at the moment, and that I would have to wait about two months.

I just don’t understand why my doctor is so convinced that it’s absolutely impossible that I have RLS. I have been doing everything that I can. I maintain a healthy diet, I take my son for walks every day to make sure I get some exercise, I take multivitamins, I don’t smoke or drink alcohol, I drink a little bit of caffeine in the morning (if I didn’t I don’t think I could function) and I stay away from all medications that are known to worsen symptoms.

I’m getting to the point where I would honestly rather not have legs than have to deal with this one more night. I go to bed later and later each night because I can’t get the urge to move under control. I pace and pace and stretch and jiggle until I am finally exhausted enough to fall asleep, and then I usually get about two hours of sleep before my son wakes up for the day. I don’t even get relief during the day. I constantly move my legs at my desk at work (which doesn’t look good as I am the office manager and I look “nervous” all the time), I can’t sit through meetings or even movies without fidgeting constantly. I am like a walking zombie all the time, and my son deserves a mother who has the energy to crawl around and play with him.

Is there a treatment that you would suggest so that I can talk to the new doctor about it when I finally get an appointment? I am worried that none of the medications will relieve my daytime RLS, or that the medication that I take at night will just make me pass out. (Anything that makes me very drowsy is really not a possibility as I live alone and my son does not regularly sleep through the night). Is there anything else I can do in the meantime to make this a little more bearable? I’m sorry this email is so long, I am just so frustrated and overwhelmed and I am nearing the end of my rope.

Also, my feet are always really, really hot. I can’t sleep with them covered and I hate when I have to wear socks and sneakers because it’s almost unbearable. Is that a symptom of RLS, or is that something else?

Thank you for doing what you do. I was so relieved when I found this website, and I am sure that I am not the only one.

Merri
Santa Rosa, CA

Medical Reply

Your current doctor has ruled out RLS on the basis of your blood tests and your age due to her complete ignorance of the disease. Only about 1/3 of RLS patients have any evidence of iron deficiency (including the very sensitive serum ferritin test which should be over 50-75 not the 10 or 20 level reported as lab normal results). RLS frequently occurs in people under age 21 and one study found that 2% of children between 8-18 (that was the group that this study looked at but I have seen RLS patients as young as 3). RLS is diagnosed by symptoms and blood tests or even a sleep study adds little (or often nothing) to help establishing the diagnosis.

Sinemet is a drug that is no longer recommended for treating RLS on a daily basis so you should not have been prescribed this drug. Currently, the drugs of choice (also FDA approved for RLS) include Mirapex and Requip (both of these come in generic brands so Kaiser uses them freely) and Horizant (which has no generic equivalent so Kaiser will do its best to make sure that you don’t get it). Those are the drugs that you should be discussing with doctor when you see her next.

If you don’t get adequate treatment from your doctor and if she then does not refer you to a specialist without delay you should make an immediate appointment with a Kaiser administrator who handles complaints and lodge a formal complaint that your doctor is not competent to treat or manage your RLS (she may be otherwise very competent) and you should DEMAND an immediate change of primary care doctors (despite their claim of 2 months delay) and an immediate referral to a neurologist or sleep specialist. In this case, the squeaky wheel gets the oil so be prepared to make lots of noise. Don’t be embarrassed to very vigorously (but politely) complain about the incredibly substandard care of your RLS and suffering and demand that Kaiser take corrective action without delay.

Almost all RLS patients should achieve complete relief of their symptoms with proper management. Do not accept anything less and don’t wait. Your hot feet likely have nothing directly to do with RLS although we do hear this complaint for many RLS patients (and also from those without RLS).

Sent: Wednesday, June 27, 2012 6:45 PM
Subject: Mirapex ER for RLS

I have been using Mirapex ER for the past two years for a severe/painful version of RLS. I have had RLS problems for a long time. My doctor just increased the dosage to 1.5 mg, 3x a day. Would you consider this too high of a dose?

Kathy P.

Medical Reply

We have dramatically changed our thoughts on the upper limit of Mirapex for treating RLS. The official upper limit used to be .75 mg and many experts exceeded that without much concern. However, we now feel that doses above .25 mg (yes, that seems very low) are likely to cause problems in the long run (like augmentation).

Therefore, the dose that you are currently taking of 4.5 mg per day is considered a massive dose (even by the old standards). If you need such high doses of Mirapex, you are most likely suffering from augmentation (worsening of RLS from taking Mirapex) and would need an entirely different course of treatment.

A Reply from Kathy

Sent: Friday, June 29, 2012 8:15 PM
Subject: Re: Mirapex ER for RLS

Thanks once again for your valued opinion. Just today my dr. had me stop the Mirapex and I was placed on Neurontin 300-600mg at bedtime. however, just a few minutes ago I had some crawling sensations in my arms. I have only taken 300mg one time. I guess I will give it a try. I would be interested in any input you may have in regard to my augmentation.

Kathy P.

Medical Reply

Unfortunately, you are in for some trouble if you follow the course of therapy that has been recommended. Stopping the Mirapex at such a large dose will create a few weeks or months of markedly worse RLS. This exacerbation of symptoms will also be much worse due to your augmentation.

Although gabapentin is somewhat helpful for controlling RLS symptoms (Horizant and Lyrica which are in the same class of drugs are much better), that class of drugs is not even close to handling the worsening RLS symptoms caused by the discontinuing Mirapex.

Typically, we use potent opioids to cover your symptoms (you are just beginning to feel what is going to be a nightmare for you) for a few weeks to months then add a drug like gabapentin in order to reduce or eliminate the opioids.

A Reply from Kathy

Sent: Saturday, June 30, 2012 3:41 AM
Subject: Re: Mirapex ER for RLS

I just ordered your book and I am going to continue my Mirapex of 1.5 twice a day along with the Neurontin until I can get to a specialist. It was my understanding that stopping Mirapex for 2 weeks and going with something else in the mean time would allow me to return to Mirapex at even a lower dose?

Kathy P.

Medical Reply

In a nutshell, once augmentation takes place, restarting a dopamine agonist has an extremely high chance of restarting the augmentation process. There are a few exceptions and in the hands of an expert a low dose (like Mirapex .125 mg) may be added and not cause problems but the risk of trouble is very high.

Sent: Thursday, June 28, 2012 12:58 AM
Subject: An alternative to Mirapex and Requip

I have been suffering from RLS for some time now. It started about 10 years after being on Zoloft for OCD. The problem is that Mirapex and Requip both have serious side effects and its affecting my marriage. Is there any way to substitute Mirapex or Requip for something that will allow me to sleep at night?

Yvan

Medical Reply

It is likely that the Zoloft is worsening your RLS but as it is probably necessary to treat your OCD, you should stay on the drug.

Currently, Horizant is the only other approved RLS drug that is not a dopamine agonist like Mirapex and Requip. As such, it does not share the side effects of those drugs. It may cause dizziness or sleepiness (which is a positive attribute when it occurs as it should during sleep hours) as its main adverse events.

If that does not work for you, there are other off label RLS drugs to consider such as tramadol or the opioids.

Sent: Thursday, June 28, 2012 12:56 PM
Subject: RLS I need a vacation

I am self diagnosed RLS and ADD. At 4 or 5, I experienced pain and a need to move when on long car trips. This sudden need to move is even hard to explain today but describe as painful, and as if my body is shutting down. Over the years my condition has progressed and I have been using medications like Tramadol and Ropinirole to some degree of success. After taking Ropinirole for 10 years, up to 3 MG per day I asked my doctor for a vacation and he prescribed the Tramadol at 3 per day. The Ropinirole makes me nauseous and taking more Tramadol to get to sleep (4 to 5).

I have 2 questions:

1) I have experienced complete relief for my RLS only two times and that is from a mid-grade fever. Is there any way to raise my body temperature?
2) I have tried taking ADD medication with some success about 8 years ago. Do you have any information about treating ADD and it working for RLS?

Christopher P.

Medical Reply

It is well known that fever obliterates RLS symptoms but there is no safe way to raise your body temperature (developing pneumonia, a kidney infection or taking a massive overdose of thyroid pills).

Stimulant medication (which is mostly what is used for ADD) often helps RLS patients as anything that prevents sleepiness/drowsiness should decrease RLS symptoms.

However, there are lots of other good treatments for your RLS.

Sent: Thursday, June 28, 2012 9:12 PM
Subject: Children with RLS?

I have RLS and am currently taking clonazepam (which I know you don't prefer) every night at bedtime. I like the clonazepam because I have learned how to take it and not be sleepy the next morning. I take a half of one if I am going to get less than 6 hours of sleep, I take a full pill for any more than that. It seems to work okay to get me to sleep, but I still get up a lot during the night. Would you suggest another drug that would keep me asleep, but without the grogginess the next day; or should I just stick with the clonazepam?

Lately I have noticed my 5 year old seems to have to move his legs a lot in the evenings when he has been sitting still for a while. Is it possible that he has RLS? Is it a hereditary condition, because my mom has it as well. How do you treat a child with this condition?

Stefanie

Medical Reply

You are correct about me not liking clonazepam as it does not really treat RLS but rather just puts you to sleep. I would still suggest that you use a drug to relieve your RLS symptoms then add a short acting sleeping pill (like Ambien or Lunesta) to treat any remaining insomnia. Adding medication to clonazepam is not a very good idea and would be just compounding the original not so good choice of therapy.

You may even do better with the new drug Horizant which relieves RLS symptoms and also helps promote sleep.

RLS is known to be very hereditary. Typically, if one member of the family has it, there is a 60% chance that others family members will also have it. We have also already found genes associated with RLS.

It has been found that 2% of children have RLS and half of them are significantly affected by the disease. However, children should be treated very cautiously and medication should be employed only when really necessary (and then only by a real RLS expert who understands how to treat children).

Sent: Monday, July 02, 2012 8:58 AM
Subject: I need advice

I am a 60 year old female. I have had RLS as far back as when I was 2 that I can recall. I have been taking Mirapex since it became available, at least a decade. I started off at the minimal dose of .125 and slowly worked my way up to 1.5 mg to 2 mg per day with frequent breakthrough.

I decided I wanted to try Horizant, but felt that with all that I've read I needed to get off the Mirapex. I have tapered myself down to .75 a day, 1 .50 mg tablet at about 7:00 pm and the last .25 I usually take at about 10 pm or so. I was having severe breakthrough, but was at least sleeping for a couple hours.

My doctor went ahead and prescribed 1 Horizant which does at 5:00 pm and Ultram ER, 1 tablet in the evening as needed. First night I felt extremely edgy without Mirapex, and did one .50 tablet at about midnight or so. Had also taken an Ultram at 9 or so, but felt no relief from the pain with that. The second night I knew I had to cut off Mirapex completely, which I did. It was a horrible night. Long story short, the last three nights have been really awful. I've tried taking two Horizant, no relief. I took one Horizant in the morning and one at 5:00, that seemed to help a bit. The Ultram does nothing for me, I've taken two of them and there is no relief.

My insurance will pay for up to 1200 mg daily of Horizant. Do you think I should try one in the morning and one at 5? I would like to ask for Percocet, but he doesn't like prescribing that at all. I can ask for Viocodin, but don't know if he'd prescribe that either. Do you have any suggestions for me? I am having a difficult time even writing this email so it's coherent from a lack of sleep.

Charlotte H.

Medical Reply

Your issue is that you have augmentation from being on Mirapex and trying to use Horizant and Ultram to get off the Mirapex is doomed to failure. You would have a better chance with Percocet (although it contains acetaminophen which does not help RLS) and less with Vicodin. Methadone generally works much better but it is unlikely that your doctor (or most others in your area) will prescribe that drug for you.

After a few weeks to months off Mirapex, it is likely that adding Horizant would enable you to reduce or eliminate the opioids.

The problem will be finding a doctor (even a specialist) who can manage the above therapy.

Sent: Tuesday, July 03, 2012 8:27 PM
Subject: RLS

I have written you two prior times and you answered each question. As mentioned earlier, I am suffering from pramipexole augmentation. After your reply, I visited my neurologist, sleep specialist and he put me on Horizant 600 mg taken at 5:00 p.m. He instructed me how he wanted me to try to taper off pramipexole 1mg with the help of Vicodin 7.5 when it’s bad. I’m down to 0.25 mg pramipexole but it’s been hell. I have been on Horizant about three weeks but not sure if it’s doing anything.

Afternoons are a problem but I try to wait until prior to bedtime to take the pramipexole. New symptoms are fatigue and inability to fall asleep. Occasionally I can force myself to do some cardio for 30 minutes. I can’t imagine a worse disease. Pain from two knee replacements don’t even register compared to the awful feelings and disruption of RLS.

If two hits of cannabis will do the trick, I might consider it if I was sure that I could avoid legal entanglements.

Lou L.

Medical Reply

The problem with your current treatment is that neither the Horizant or the Vicodin potent enough to treat your RLS when weaning off pramipexole. It typically requires a higher potency opioid like methadone or oxycodone. Once you have been off the pramipexole for several weeks to a couple of months, adding Horizant may then allow you to reduce (or possibly eliminate) the opioid. When done properly as detailed above, the process can be almost painless.

Marijuana does help RLS symptoms (typically only a few puffs) but of course there are other issues with that drug.

A Reply from Lou

Sent: Monday, July 25, 2011 3:35 PM
Subject: RLS

I am a 71 year old retired (Aug. 2010) dentist. I have had RLS about twenty years, maybe longer. Went to a sleep specialist for insomnia. They did polysomnography and said I had mild to moderate apnea. Prescribed a CPAP which I have never been able to use effectively because of RLS and possibly other insomnia factors. I told him about my jimmy legs and he prescribed Mirapex. Been on Mirapex 1mg. for quite a few years along with 1mg clonazepam and 50 mg trazodone.

Also been on 40 mg Celexa for over 25 years, which I understand could contribute to my RLS. Tried Wellbutrin. Didn’t work. Seem to be getting augmentation as I get weird symptoms as soon as I get still during the day. I can’t ever seem to relax without a horrible sensation interrupting the relaxation response. Despite this I continue to function, do charity dental work on Monday mornings, exercise, travel and have a limited social life.

The point of all this is, I feel I am getting to the end of my rope. Go over to a friends for dinner, do fine then sit down to watch a movie and have to desperately leave in the middle. Go on a cruise and spend half the night walking the halls etc. I have had two knee replacements and during one of these I found Vicodin helped immensely but unsure about the perils of this type treatment. Last thing. I am now getting paresthesia in all my toes practically every night for several hours. Can this be related to RLS or is it just some neuropathy?

Lou L.

Medical Reply

It is very possible and likely that you have augmentation from taking Mirapex especially as you are on quite a high dose of that drug. We do not like to use doses over .5 mg/day for RLS and current thoughts are to keep the dose at .25 mg or less.

It is very difficult to transition patients off Mirapex to other RLS drugs and most doctors do not understand how to do it (and how bad the symptoms become during this period). It can be done very safely and comfortably with the correct medications (see our website and letters for more info). Under proper care (often hard to find even with specialists such as sleep specialists and neurologists), your RLS should be controlled and life should be almost completely back to normal for you.

A Reply from Lou

Sent: Tuesday, August 21, 2012 3:02 PM
Subject: RLS Pharmacology

Developed augmentation from Mirapex 1+ mg. Tried Horizant while taking Vicodin 7.5. Gradually increased Vicodin from 1/night to 2/night. Horizant didn’t seem to be doing anything but cause daytime sleepiness My sleep physician put me on Neupro. He wanted me to stay on the Horizant in order to control variables I but had to stop due to extreme daytime sleepiness.

Now using 2 mg patch Neupro. Have decreased Vicodin to 1/night average as my physician wanted me to try to reduce this. His theory was that it would soon be 4/night. One night I required no Vicodin, occasionally two. Main symptom I have now during the day is sleepiness and fatigue when being still from the Neupro, I assume. Not sure Neupro is working but I assume it must be helping due to the fact that I have been able to reduce Vicodin. Can’t even have a glass of wine without a long tortuous night, so on the wagon.

Lou L.

Medical Reply

The issue here is that you have augmentation and Neupro (another dopamine agonist) is better than Mirapex but will likely just delay the augmentation problem for a while. Once augmentation takes hold, we typically recommend stopping all dopamine agonists and using a potent opioid like methadone or oxycodone (Vicodin is just not strong enough to cover that problem). After a few weeks to months off dopamine agonists when the RLS calms down, adding another medication (Lyrica in your case since it is shorter acting than Horizant) may help reduce or eliminate the opioids.

This is a tough situation and most doctors do not know how to treat it.

Sent: Tuesday, July 03, 2012 10:49 PM
Subject: Re: Help with RLS!

I wanted to follow up with you with a question about Requip because you have been so helpful to me in the past. This has been a wonder drug for me and has been an enormous help with my RLS. I take 1mg each night and for 6 months now it has worked very well. However, it seems to be wearing off. About 2 weeks ago the RLS started to return and now it is back worse than it has ever been. What would you recommend? Should the dose be stepped up or should I come off the Requip and try Mirapex or some other drug? My doctor is guiding me through this but honestly she doesn't seem to know much about RLS or these drugs.

Matt B.

Medical Reply

Unfortunately, it sounds as if you have developed augmentation from Requip. Augmentation occurs after an initial period of good response to a dopamine drug like Requip then symptoms start occurring earlier in the day, are more intense, do not respond as well to the same dose of medication and may even spread to other body parts (like the arms). When this happens, the best course is usually to stop the Requip but replacing it with another dopamine agonist like Mirapex will most likely just keep fueling the augmentation problem.

Stopping the Requip is quite difficult as the RLS symptoms will get much worse for a few weeks to months. You can check our many letters on this topic but usually potent opioids are needed to treat your RLS when you discontinue the Requip.

A Reply from Matt

Sent: Wed, Jul 4, 2012 at 2:58 AM
Subject: Re: Help with RLS!

I will see the doctor this week but basically you are saying to taper down from the Requip and then have her replace it with a potent opioid after a period of weeks (or can this be done right away?). To be honest your email kind of terrifies me because now I'm afraid I will be unprotected from RLS and will go back to the years of sleeplessness I had before I found Requip.

Matt

Medical Reply

Unfortunately, it sounds as if you have developed augmentation from Requip. Augmentation occurs after an initial period of good response to a dopamine drug like Requip then symptoms start occurring earlier in the day, are more intense, do not respond as well to the same dose of medication and may even spread to other body parts (like the arms). When this happens, the best course is usually to stop the Requip but replacing it with another dopamine agonist like Mirapex will most likely just keep fueling the augmentation problem.

Stopping the Requip is quite difficult as the RLS symptoms will get much worse for a few weeks to months. You can check our many letters on this topic but usually potent opioids are needed to treat your RLS when you discontinue the Requip.

A Reply from Matt

Sent: Wed, Jul 4, 2012 at 9:12 PM
Subject: Re: Help with RLS!

Wow very helpful, I'll bring your advice to my N.P. and see if she can help me with it. Unfortunately, it seems like most doctors just don't have that level of familiarity with these drugs. I really appreciate the service you provide, such a lifesaver!

Matt

Medical Reply

Some RLS doctors taper the Requip slowly but my approach is to cold turkey the Requip but start the opioid (methadone is my favorite but oxycodone may also work) immediately. With this therapy (and sufficient opioids), the transition is often painless with no loss sleep.

The therapy works very well but this issue is finding a doctor who can manage that therapy.

A Reply from Matt

Sent: Thursday, July 05, 2012 6:20 AM
Subject: Re: Help with RLS!

What would be the dosage of methadone and would I take it for an extended period?

Matt

Medical Reply

Typically, we start at methadone 5 mg, 1-2 tablets three times daily as needed. Often less is needed in the morning or afternoon when people are more active. This dose usually can be decreased in several weeks or so and even more so if another drug like Horizant or Lyrica is added down the road.

Sent: Wednesday, July 04, 2012 11:13 AM
Subject: Antihistamines

I am having a very bad reaction to an alginate impression I had done at the dentist for a partial plate I am having made. My whole mouth and throat are burning. The dentist doesn't know why and has no advice on what to do.

I am going to a doctor tomorrow who most likely will want to prescribe an antihistamine. How bad is it if I take one of the antihistamines you list as not being good for RLS patients. If taken for a few days or even a week, will it cause permanent problems. I just want to know the risks versus the rewards.

Dale K.

Medical Reply

The sedating antihistamines usually but not always worsen RLS. The only way to figure this out is by trial and error. However, the non-sedating antihistamines like Allegra, Clarinex and Zyrtec (can be sedating for a small percentage of patients) often work as well as the sedating ones.

The problems caused by sedating antihistamines last only as long as you take them.

Sent: Wednesday, July 04, 2012 1:55 PM
Subject: Move from ropinirole to Neupro patch

I have suffered from RLS for nearly 40 years and have been on medication for approx 6 years. My symptoms were 24/7 and in both my arms and legs long before I started medication.
At present I take 4.5mg ropinirole spread over the 24 hour period including during the night. This is supplemented with Tramadol which I take 50mg at 1pm, 100mg at 5pm and 50mg again around 10pm.
I have codeine 30/500 for another condition and it is also helpful in coping with RLS breakthrough. I have not wanted to increase the ropinirole further in case of augmentation.

I am constantly dealing with this condition and have done so for most of my adult life, I am now 63. Always looking ahead i.e. if I go to the theatre, go out to dinner etc. etc. My doctor agrees he is not really familiar with RLS, however, he has been willing work with me and to discuss medications using the RLS Medical Bulletin.

I am wondering if the Neupro patch would work for me. The idea of a once a day DA application sounds wonderful. Even if it was still necessary to supplement with the Tramadol and codeine. I know that the 'strengths' of ropinirole and Mirapex vary greatly and thus also the dosages. How does the strength of ropinirole compare to the Neupro patch?

My present ropinirole dose is 4.5mg daily and is insufficient on its own to cope with my symptoms. And the Neupro is also a DA. The thought of stopping my ropinirole and starting on the lowest dose Neupro patch and then working up to a 'working dose' sounds traumatic beyond consideration. Could I transfer directly from my present 4.5mg ropinirole daily to a Neupro patch in a sufficient dosage to 'work'.

Betty R.

Medical Reply

It is very difficult to compare potency of short acting dopamine agonists like Requip and Mirapex to long acting ones like Neupro. It is likely that you will need the 2 or 3 mg patch to get significant relief. However, even with the long acting Neupro, augmentation may still be an issue.

Although codeine at 30 mg (the 500 mg of acetaminophen is not helpful for RLS) helps RLS modestly, the more potent opioids which are much more effective for RLS are not typically prescribed by doctors in the UK. These potent opioids are likely the best solution for your RLS.

A Reply from Betty

Sent: Friday, July 06, 2012 10:31 AM
Subject: RE: Move from ropinirole to Neupro patch

Bearing in mind that I am already used to the drug Requip/ropinirole and take 4.5mg spread over a 24 hour period I wonder if it might be best first to try Requip XL before trying the Neupro patch. What dosage of Requip XL would you suggest would equate to my current short acting dosage, and again can the changeover be done from one day to the next, hopefully without ill effect.

Betty

Medical Reply

It is hard to say how well Requip XL works for RLS as there is less experience with this drug. A few RLS specialists use this drug reasonably often and find that it works well but I suspect that it will not work as well as Neupro.

The other concern is that changing to a long acting dopamine drug may just delay the inevitable augmentation problem that will make it necessary for you to go off that class of medication.

A Reply from Betty

Sent: Saturday, July 07, 2012 12:07 AM
Subject: RE: Move from ropinirole to Neupro patch

You refer to delaying the 'inevitable augmentation problem' - which sounds like you have no doubt that augmentation will eventually occur? I have been taking Requip for about 5 years.

And if you consider that augmentation is bound to occur, then as Neupro is a DA, would you consider that augmentation is bound to occur with the Neupro as well as the Requip.

Betty

Medical Reply

The problem is that with you being already on a high dose of Requip and still needing tramadol and codeine is that you likely already experiencing significant augmentation. Since you have RLS around the clock that is not being controlled by high doses of Requip, adding more will bring temporary relief but will eventually (weeks to months) cause more augmentation. Neupro does have less of an augmentation problem than Requip (not sure how it would compare to Requip XL) but when given to someone who already has augmentation would be less likely to improve the situation (compared to when given to someone just starting therapy for RLS).

The correct treatment would be to get off the dopamine agonists completely and switch to a potent opioid which may be very difficult to accomplish in the UK.

Sent: Friday, July 06, 2012 3:45 PM
Subject: RE: Moderate to Severe RLS

To wean myself from Requip, I found a mix of 12.5 to 15 mg of methadone and 7.5 to 10 mg of hydrocodone worked pretty well for a couple of months, February through March, but being concerned and mindful about addiction, I wanted to transition to Lyrica or Horizant. My wife has also commented that this combination made me sluggish and that I didn’t feel well much of this time.

I was trying to taper down, but didn’t get a lot of relief from the Lyrica, so the dosage is about 12.5/7.5 opiates. However, with the 600 mg Horizant, the medication gives me zingers of medication as it releases and it makes me shaky/restless rather than sleepy or drowsy, like I’ve explained before. I’ll even be asleep and when the drug releases it wakes me up as it enters my system (way it feels anyway). Therefore, I find that I’m taking as much methadone/hydrocodone as I was before I started Horizant and that I’m not sleeping as well. The Horizant is taking care of the RLS symptoms, but it just wires me. Am I the only person you’re hearing from with this kind of reaction and could it be caused by anything else I’m doing that could exaggerate it?

I guess by the explanation during this email, I’m making the case for trying the Lyrica again at the higher than 300 mg dosage and see if that gives me any relief so I can start to cut down on the opiates. Does this seem like a reasonable plan or do you see some flaws in my plan and how should I address them with my neurologist? Also, my other thought is to go through the paperwork and screening process and see about getting an appointment at the Booth Gardner Parkinson Disease Center to see what they say. However, I also feel like I’m doing everything I can to figure this out to create the best outcome I/we can, so I don’t know what that would do for me (which is why I haven’t done it yet). Still searching for answers .

Scott A.

Medical Reply

I have seen your reaction to Horizant in a few other patients but it is a very unusual response as you already know, the reverse is the real problem for most. Since Horizant does not seem to work for you, Lyrica would seem to be a good choice.

The maximum single dose for Lyrica is 450 mg and the daily dose maximum is 600 mg (usually 300 mg twice daily). We always strive to find the lowest dose that works so increasing by increments of 50- 75 mg is helpful.

Sent: Saturday, July 07, 2012 12:03 PM
Subject: Infant RLS

I am the mother of an 8 month old little boy. He has never been a good sleeper, but the last two months have been especially difficult. He began "kicking" at random times during the night and it has gotten worse by the week. He is also scratching/pulling at his legs during the night. I have tried everything to get him to sleep but I am starting to wonder if his problem could be RLS. He will kick off with both legs - sometimes every few seconds for hours at a time. He will then wake up crying and exhausted from all of the movement. He usually has at least two episodes per night - last night it began at 2am and didn't end until after 6am.

 Is it possible that a child this young could suffer from RLS? What type of doctor should I have him see? I fear my normal pediatrician will laugh at me if I bring this up, and blame it on "poor sleep habits." Any advice would be greatly appreciated!

Amy

Medical Reply

It is certainly possible that your son has RLS and that the leg movements may be PLM (Periodic Limb Movements) which are very commonly associated with RLS. It could be very difficult to diagnose this problem in an 8 month old but the PLM could be diagnosed with a sleep study. However, it may not be worth doing more investigation as treatment is not often given to children that young. We usually make the diagnosis of RLS when the kids can talk so that they can communicate their symptoms.

The odds would be greater that he has RLS/PLM if he has a family member with RLS. I have seen some 3 and 4 year RLS patients whose parents have described very similar activities when their kids where infants.

There are only a few pediatric RLS specialists in the country and they would be the best choice to evaluate your son. The next best choice would be a pediatric neurologist but most do not know that much about RLS/PLM.

Sent: Monday, July 09, 2012 1:16 PM
Subject: Correct dose of Requip?

I am a 63 yr. old male and have had RLS for over 10 yrs., with it getting progressively worse. I am taking ropinirole, 5 mg tablets, some times 3 per day. I do not have any pain in my legs, just the need to move my leg. My MD has said that too much ropinirole will cause problems with movement if I take it over a long period of time. Is this the case? I just started taking Zolpidem CR for sleep and it works well. Would you recommend some other combination of meds that would help my symptoms but at a lower dose?

Fred W.

Medical Reply

Your doctor is partially correct in that your dose is too high. However, the ropinirole will not cause movement problems but will likely cause augmentation which is a worsening of RLS from taking high doses of a dopamine agonist (ropinirole). Alternate therapy includes Horizant which is another class of drug.

Ambien (zolpidem) can be taken with RLS drug as many RLS patients have insomnia even when their RLS symptoms are well controlled. Side effects may occur with Ambien or any other sleeping pills but most patients do very well with them.

Sent: Thursday, July 12, 2012 1:22 AM
Subject: Horizant

After being on 1 Mirapex 0.25 before bedtime for 8 years I went off it 5 months ago due to augmentation. Since then I've been on 1 Horizant 600 mg at 5 pm and 1-2 Tramadol 50 mg before bedtime (usually around 10pm). My neurologist suggested taking the Tramadol because even though the Horizant is pretty successful in treating the RLS, I would still get some symptoms around 10-12pm.

This therapy had been successful; however, for the last few weeks the symptoms at 10-11 pm seem to becoming worse and are appearing even with taking the Tramadol, although the Tramadol eventually kicks in and eliminates them. Because 1 Horizant doesn't seem to be totally effective, my neurologist also suggested I could try taking 2 Horizant tablets to hopefully eliminate the symptoms all together, although he said most insurance companies won't cover this because it's not FDA approved at that dosage. My insurance doesn't even cover 1 Horizant yet, so even taking the 1 per day is very expensive. I really don't want to pay double for taking 2 Horizant tablets. The Tramadol is very inexpensive and I'm wondering if I could just take more than the 1-2 50 mg of Tramadol (without having addiction).

I wish I could get off the Horizant all together because of the expense but don't know what other options I have at this point. I really don't want to get on the opioids because I'm afraid of addiction, etc. I'm wondering if taking more tramadol alone (not sure what dosage) without the Horizant would be effective in treating my RLS. I also wonder if there is any truth to what I've read that even though one had to stop taking Mirapex due to augmentation, its possible to go back on it again and not have augmentation problems. Either of these options would be much less expensive.

Mike

Medical Reply

The maximum dose of tramadol is 2 tablets every 6 hours to treat pain. There is no established dose for treating RLS but we do not like to exceed the maximum dose used for pain. Therefore, since 2 tramadol seem to work reasonably well with Horizant, they may not work well without that drug and you really can't go to a higher dose of tramadol.

There are several alternatives. Even though gabapentin does not typically work as well as Horizant in most patients, it may still be worth trying as it is cheaper. It is difficult to calculate an equivalent dose of gabapentin as it is not well absorbed (and varied considerably from person to person) and is not sustained release. A reasonable starting dose might be one 300 mg pill at 5 pm and another at 10 pm but you may need much more or less.

It is quite likely that your insurance company will eventually approve Horizant as it is the only other FDA approved drug for RLS. Although I also use that drug at 2 and sometimes even 3 tablets, the insurance company may or may not approve it at that dose (but it may work very well).

There is a great fear and concern about addiction to opioids. If they are monitored carefully by your doctor and you have no history of drug abuse, addiction should be a rare event. Ultimately, that may be your least expensive choice for full control of your RLS.

It is not a good idea to go back to Mirapex or any other short acting dopamine agonist once augmentation has occurred. In my experience, the augmentation returns very quickly and often even worse than previously.

A Reply from Mike

Sent: Tuesday, August 28, 2012 2:56 PM
Subject: Horizant

I'm taking one Horizant 600 mg at 5:00 pm each day with food for my RLS. So far, I've been taking it with my dinner; however, 5 pm is really too early for my dinner. I'm use to eating dinner around 6:30-7:00 and taking Horizant at 5 pm with food has been pretty inconvenient. How much food is necessary when taking Horizant? Can it be taken with a small amount of food, such as apple or yogurt? I tried researching this but haven't been able to find an answer.

Mike

Medical Reply

There is no exact answer to your question and your question is a commonly asked one. Horizant is best absorbed with food and the more food (and especially the higher the fat content of the food) the better it is absorbed. The difference between taking it while fasting and taking it with a large high fatty meal could be 50% or more absorbed into the body.

However, many RLS patients have faced you same dilemma and there are two approaches to solving it. The first is to take it at 5-6 pm with a small amount of food and see how it works. If it seems to be less potent, try adding food or a little bit of high fat content food (we don't really want to make you fat and raise your cholesterol!). The other choice would be to take it closer to 7 pm with dinner and see if it kicks in fast enough to be effective in time to enjoy the evening and be able to get to sleep.

A little trial and error should likely result in getting sufficient relief without making you alter your dining schedule too drastically.

Sent: Sunday, July 15, 2012 12:27 PM
Subject: RLS sucks

I wanted to share my experiences with my restless legs treatment. I've been taking 15 mg of methadone for several years now and it is the most effective treatment of all the treatments I've ever had. At one time Gabapentin was very effective for almost five years, but caused weight gain. I stopped taking the Gabapentin for several months without a return of symptoms, but when they did return I tried to start taking it again it seemed to make my symptoms worse. I read in one of your posts that it's not uncommon for Gabapentin to make symptoms worse before getting better. Did I get that right? I have no intention of switching, but it would be nice to know there is a backup plan just in case.

The methadone is a dream come true for the most part. I feel nothing from it other than my symptoms being relieved. I've been taking one 5 mg in the morning and 2 in the evening. That seems to work great, mostly in the evening, but I do have some symptoms during the day. Since I have so many distractions during the day I've been able to live with it. However, you had mentioned if I wanted to try 10 mg in the morning that it would not be unreasonable, so I have. This has greatly improved my quality of life to the point of almost feeling the way I think a normal person feels. I'm so much more productive lately. I occasionally take a holiday from the methadone and take either Tramadol or Vicoprophen for 3 or 4 days.

Only at night and obviously never together. I just suffer through the days a little even though I seem to have a residual effect from the night before that carries over into the day. Again, it's just nice to know there is something there in an emergency. I don't feel any dependency issues and am not really afraid of that considering my past usage. I don't think it's in my nature. The methadone for me takes 2 full hours to relieve the systems if I don't take it in a timely fashion. Is that unusual? It would be nice if there was something like an inhaler that would give immediate results until methadone kicks in. Drives me nuts when I forget to take it and I suffer for a couple hours. Of course that's my own fault. It's a reminder there are no miracles and we need to take care of ourselves.

By the way, is there any improved ways of getting your ferritin level up. Mine typically runs 8 to 20. I have it checked once a year or so at Kaiser. I have a real hard time with the Ferrous Sulfate. I would try the infusion to see if it would help with my symptoms, but it sounds a little shaky to me. What our your thoughts on iron?

I am so glad I found you I don't know how many years it's been now. Reading through all the posts reminds me how painful and hopeless it used to be. Countless wrong medications that would make the problem worst. It must be really nice to know that you have helped countless people stop their suffering and go on to normal lives. When my symptoms were at there worst I would have fantasies about cutting off my arms and legs. It was so painful, just plain torture. I'd feel like going to the emergency room, fortunately I never did. Can't imagine what they would do. Probably Valium or something. I remember my old Doctors trying those types of drugs and antidepressants also. Just awful. I hope people that are still suffering can find you and get the help they need. I think many people just give up after listening to Doctors unfamiliar with the condition.

Mark

Medical Reply

Gabapentin does not typically make RLS worse before making it better but it does need to be worked up to an adequate dose to relieve RLS symptoms. The new drug that turn into gabapentin (Horizant) that has been approved for RLS works much better than regular gabapentin.

There is no reason to use Vicoprophen for methadone drug holidays as it works on the same opioid receptors. Tramadol would be better but actually, there is no proven medical purpose to taking drug holidays from daily low methadone doses.

Serum iron can be raised by taking oral iron (325 mg) with 200 mg of Vitamin C, 1-2 hours before meals three times daily. IV iron is not ready for prime yet and should be reserved for those with refractory anemia.

Sent: Friday, November 11, 2011 10:05 AM
Subject: Leaving well enough alone?

I have been taking Requip for several years. I am currently at 1.25 mg at bedtime. It works. I do not sleep straight thru, but I can usually fall back to sleep whenever I wake up. Its not great sleep, but I rarely feel any crawling in my legs.

The problem is during the day, particularly in the evening. After work, I can not sit and relax or read a book. I was a big reader. I can watch a movie, if I spend half the movie standing behind a chair. I can usually find some physical activity to keep me moving. But on those days when I am very tired, it is very difficult to keep moving. When I am ill, I can not rest in bed.

So I don't know what to do. I hate to mess with my current medication, because I can at least sleep at night. And I don't want to take anymore medicine than I need to. My experience with the doctors here has not been very good, particularly their suggestions about medication.

Ed

Medical Reply

I never like to recommend or prescribe more medication than is necessary to adequately relieve those annoying RLS symptoms. However, you clearly have significant problems that need a change in your present regimen to fix those problems.

Here are the options that you should discuss with your doctors:

You may need to split your dose of Requip and take the first dose about 1-2 hours before you need it in the evening (to give it enough time to kick in). You may have to increase your total Requip dose to cover the new extended period of treatment. The only concern is that if your RLS started occurring earlier in the day since you have started using Requip then you may be experiencing augmentation from the Requip (worsening of RLS due to taking a dopamine agonist drug). If that is the case, then increasing the Requip will help for a while then ultimately make the RLS worse (adding fuel to the fire).

Another option would be to add the new RLS drug, Horizant at 5 pm (or a little earlier if it does not kick in fast enough) with food and that should help cover the evening and much of the night. It is possible that the Horizant might work alone but for now, it would likely be better to take it with the Requip (stopping the Requip will dramatically increase your RLS symptoms for a few weeks and the Horizant may not be up to treating that worsened RLS).

A third option would be to take a tramadol or Vicodin 30-60 minutes before sitting down in the evening (on evenings when you need to sit and relax) and that should cover you until bedtime. There are other treatments options but these are amongst the best choices to try first.

Remember, there are no points given for suffering (to the best of our knowledge, though some may disagree) so I would not put up with your untreated RLS symptoms when so many good treatment options exist that can make you feel well.

Sent: Tuesday, July 17, 2012 10:05 PM
Subject: oxycodone and augmentation.

I have written you several times in the past and your email responses have been extremely helpful in dealing with my RLS. I was on Requip for about 5 years until the augmentation became so bad ( dosages not working resulting in increases in frequency and amounts ) that I had to stop taking it. During the withdrawal period, which was hell as you indicated it would be, I saw a neurologist that put me on Clonazepam that not only did not help my RLS, it addicted me and sent me down another really bad road. It took me 3 months to wean myself from that drug, and in the interim, based on suggestions from reading letters others have written you, and your responses, I got a second neurologist to prescribe oxycodone . The oxycodone worked very well for me, and I was able to obtain relief from my symptoms at a dosage of 7.5 milligrams, taken only at night before bedtime. Luckily my RLS is pretty much relegated to nighttime only, so daytime dosages are not required.

After my experience with Clonazepam, I was, and still am, concerned about possible addiction with oxycodone. For this reason I only use the Oxycodone occasionally , and use alternative methods , such as hot baths, to relax myself long enough to get the sensations to subside long enough to drop off to sleep. On many nights this can be a 2 to 3 hour process till I am tired enough to fall asleep quickly before sensations return. It is for this reason I am considering using the Oxycodone a bit more frequently again.

In your experience , if I go back to using the oxycodone more frequently is it likely I will experience the same results I did with Requip. Can oxycodone, like Requip, lead to increased augmentation, increased dosages, symptoms returning during the day, relief between dosages not lasting as long. I really appreciate your taking the time to answer these emails and I feel without having found this site, I would be struggling much more severely with my RLS.

John

Medical Reply

If you read my letters or my book, you will see my thoughts on clonazepam for RLS which as you probably already know are that it should not be used almost ever for that condition.

Oxycodone can be taken at low dose (up to 15-20 mg/day) for RLS on a daily basis without any concern for augmentation, symptoms returning tolerance/dependence or needing to escalate dosage (unless something else causes your RLS to worsen like starting an antidepressant). Most of the patients who start a potent opioid (most of us use methadone rather than oxycodone) stay on the same dose for years or even decades.

A Reply from John

Sent: Thursday, September 13, 2012 5:52 AM
Subject: opioids and depression

I am 64 years old and currently taking 2.5mgs. to a maximum of 7.5 mgs. of oxycodone a night, at bedtime only, to relieve my RLS symptoms. Along with the oxycodone I take 50 mgs. of Wellbutrin for depression which I have been taking for about 2 years. I got on the Wellbutrin per my psychiatrists recommendation , 2 years ago when I was extremely depressed detoxing from clonazepam, which was prescribed to me for RLS. The depression was severe and along with the Wellbutrin he added nortriptyline which seemed to help, but since I have always suffered from mild to medium depression, before the Clonazepam withdrawal, its difficult to recall just how much it helped.

Regardless , I had to stop the nortriptyline in order to take another series of tests, and not wanting to be on any more drugs than necessary, I have stayed off the Nortriptyline , but continue to take the Wellbutrin. My reasons for staying off the nortriptyline were supported by the side effects I had with it also. Dry mouth and felling light headed when I would stand up quickly. Nothing horrible , but nagging just the same.

I have been off the nortriptyline for 4 to 5 months, and its just been recently, about 4 to 7 weeks, that I have been taking the oxycodone on a regular basis. I try to take 2.5mgs. on odd nights, but most often its 5 mgs. at bedtime. I never take any more than 7.5 mgs. on any given day.

My question, based on your experience, is can the combination of dropping the Nortriptyline and increasing the frequency of the Oxycodone be contributing to an increase in my depression. Also, at the level of intake of the oxycodone, should I be worried about tolerance/addiction. And Finally would you suggest I reinstate the Nortriptyline to see if the depression decreases.

Neither of the doctors I see are skilled in RLS treatment, and there is not a good RLS specialist anywhere in my area, but my main doctor knows I am a tenacious researcher (I have read nearly every letter anyone has sent you on the RLS site along with your first book), and is generally willing to follow the information I supply him based on my research.

John E.

Medical Reply

It is impossible to be sure what is causing your depression but you are correct that both dropping the nortriptyline or increasing the oxycodone (or both together) may have worsened your depression. Nortriptyline is one of the few older antidepressants that does not worsen RLS but it is not used very much these days as it is not as effective as the newer drugs and has more side effects (which you have already found out). You may want to consider increasing the Wellbutrin (if you are tolerating it well) as you are on a low dose.

It is always possible that the oxycodone is causing depression (I have a few cases of that happening) but the only way to prove that would be to stop the drug and that would be a rather difficult experiment right now for you. If your depression came on soon after increasing the oxycodone, then that would make it more likely to be responsible for causing it.

Although tolerance/dependence is always a concern, if you have no history of drug abuse and take only enough oxycodone to relief most of your symptoms, it is very unlikely that you will have any such problems.

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The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 101.
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