Patient letters on RLS symptoms and remedies- Page 116

 

Kicking RLS/PLMD Patient



Sent: Tuesday, January 03, 2017 7:53 AM
Subject: RLS and iron absorption

I read through the website on various medications to treat RLS. I have had symptoms since my 20s and am now 72 with RLS problems every night. My doctor has prescribed Klonopin 0.25 dosage. I do take it after 2 or 3 days of miserable nights but find that taking it every night makes me listless and not clear thinking. A pharmacist friends says the drug is dangerous long-term and I should find a substitute. My doctor will not prescribe Ambien or Lyrica for sleep and she has not recommended Requip.

I am interested in the iron absorption issue. Does caffeine inhibit iron absorption in the brain? If so, how much? What about diet--is there anything to improve iron absorption in the brain?

Janice A., CT

Medical Reply

Coffee can inhibit the absorption of iron from the stomach and intestines by up to 40% (tea may reduce the absorption by up to 60%). Once in the blood stream, coffee has no additional effect on reducing the transport of iron from the blood into the brain.

Klonopin is one of my least favorite drugs for treating RLS. It does not really reduce RLS symptoms but rather works as a sleeping pill to put you to sleep. Thus it would work equally well for headaches, back pain or any other discomfort to help you sleep while not really addressing the actual problem. The issue is that Klonopin has over a 40 hour half-life which means that it takes the body a long time to get rid of the drug which is why you feel fuzzy the next day.

Ambien would be a better choice to treat the insomnia associated with RLS (if the RLS is not treated directly) as it has a half-life of only 2.5 hours. Tolerance/dependence/addiction can occur with all these sleeping pills but Klonopin is the most likely one to have these issues.

My first choice to treat RLS is no longer Requip (or its cousin, Mirapex). They do work extremely well initially but over time (months to years), they tend to make RLS worse (called RLS augmentation). A much better choice would be Lyrica, Horizant or gabapentin which help reduce RLS symptoms directly and also help in promoting sleep.


Sent: Thursday, January 12, 2017 4:49 AM
Subject: Neurologist not being very eh

I would just like to tell you that I went to see a neurologist on Friday the 6th of January about my RLS well, I was gob smacked. He told me that I could go up to 16mg (I am on the transdermal patch 2mg). He told me that he gave his patients who have Parkinson's disease 16/20MG.He has never heard of augmentation. When I told him I am not a Parkinson's patient he just shrugged his shoulder. I would just like your opinion.

Is he correct in saying I can take unto 16 mg? I suffer really bad with RLS, especially at night when I want to sleep. I think the last time I had a god nights sleep was...well I cannot remember.

Susan T.

Medical Reply

Your neurologist may be very good at treating Parkinsonís Disease but he clearly does not know much about RLS. The maximum FDA approved dose of Neupro is 3 mg for treating RLS. Augmentation becomes an issue at higher doses which is why we do not use those higher doses. RLS should not be treated with the same high doses of dopamine drugs as Parkinsonís Disease.

This is not just my opinion but that of my fellow experts. I have attached a medical article that several of us published recently which states very clearly the maximum doses of dopamine drugs (like Neupro) that should be used to treat RLS.


Sent: Sunday, January 15, 2017 8:15 PM
Subject: Heartburn with Mirapex?

For the past few months, I have had increasing heartburn to the point where sleep is difficult, or even more difficult than it was with just restless leg. I am taking .25 Mirapex at night in two doses, one at about 7 pm and one at 10 or just before I got to bed. i have been trying to correlate to any food that I have eaten and have not been able to. Is there a chance that the heartburn is related to the Mirapex?

I have tried PPIs and they have no effect. I have been on Mirapex for about 3 years and have had some bouts of heartburn during that time but nothing like this where I have to constantly burp to keep from getting unbearable burning. I have tried other medications with no effect either, like Carafate and digestive enzymes.

Kathy B.

Medical Reply

It is possible that the Mirapex is causing your heartburn but it would be more likely to be the cause of that problem if it occurred from the beginning of starting it 3 years ago. An easy way to figure this out would be to go off the Mirapex for about a week or 2 and see if the heartburn resolves. You could switch to an opioid (oxycodone, hydrocodone, etc.) for that week to control your RLS symptoms.

A Reply from Kathy

Sent: Sunday, January 15, 2017 9:23 PM
Subject: Re: heartburn

I really hate opioids, they make me throw up and completely stop up my system. My doctor has suggested that patch, Neupro, could that possibly help. There is no way I could not take the Mirapex for a week and survive to tell the tale.

Kathy B.

Medical Reply

You are already on a large dose of Mirapex (the maximum dose that is FDA approved is .5 mg/day but I recommend a lower daily maximum of .25 mg) and to replace that with Neupro may require at least 3 mg/day (the maximum FDA approved dose for RLS) or higher doses. Since Neupro is a dopamine agonist drug similar to Mirapex, it might cause the same problem. It might be worth a short trial since you canít tolerate opioids.


Sent: Monday, January 16, 2017 4:55 PM
Subject: Extra severe RLS

I am 54 year old woman who has had RLS for 15 plus years. I was first given Klonopin, then when that stopped working, I was given Mirapex, then ropinirole, I was on 2 mg ropinirole 4x a day for 2 years. Then I got thyroid cancer, and had RAI. Started having allergies to medicines. Anaphylaxis reactions. To antibiotics, cytomel, blood pressure medication etc. Then the ropinirole.

I have a neurologist that didn't seem to feel it was possible. The immunologists says it is and have to stop. Reactions to Mirapex and ropinirole, now starting to have symptoms with the Neupro patch. I am on 4 mg. It makes me wheeze. I have tried Xanax, gabapentin, the one that sounds like dopamine. None work even at high doses.

I feel like I am being thrown against a brick wall every 20 seconds. Doctors don't seem concerned. I haven't slept for more than 2 hrs a day for weeks now. I am exhausted. I can't live like this. Read here about iron, will get that checked. But has anyone heard of this severity? It's more like an electro shock, arms, legs, neck flexing/spasming.

Deana A.

Medical Reply

It is likely that you are experiencing augmentation (a worsening of RLS from being on a dopamine drug like the Neupro patch). People with augmentation typically experience very severe RLS symptoms just as you describe. The treatment is to get off the dopamine drug and switch to an opioid like oxycodone or methadone.


Sent: Saturday, January 21, 2017 6:19 AM
Subject: Using Horizant to get off Mirapex?

1). I do not tolerate opiates at all - is Ultram a viable option for the difficult period of stopping Mirapex?
2). If I continue with Mirapex, keeping the dose at .25 mg, is it basically Okay to include Horizant?
3.) In regards to Mirapex ER, it seems odd the regular formula is approved for RLS yet ER is not. I am currently receiving chemo therapy and wonder if a more continuous dose of medication would be beneficial.

Tina C.

Medical Reply

1. Ultram will help somewhat but not nearly as well as true opioids.
2. We often combine Horizant or Lyrica with Mirapex to help keep the Mirapex dose as low as possible so that is fine.
3. Mirapex ER is considered a new drug and the drug company (BI) had to do further studies to get it FDA approved for PD. They chose not to do the studies for RLS.


Sent: Saturday, January 21, 2017 3:19 PM
Subject: RLS

If a person has RLS type of symptoms that is the urge to move sensations in other body parts such as hands /arms but not in the legs and never had them in the legs (not on any meds ) can this be classed as RLS? This is a question from a member of a UK support group.

Kim W.

Medical Reply

For symptoms in parts other than the legs, symptoms must have been present first in the legs. The leg symptoms can become minimal and the other arm/body symptoms worse, but the other body symptoms must be preceded by leg symptoms sometime in the past.


Sent: Sunday, January 22, 2017 6:13 AM
Subject: RLS / PLMD question

I stumbled across this question and answer board on-line and I have a question about the possibility of treating nighttime PLMD with marijuana.
I'm a 55yo woman, and have had some RLS symptoms for many years, but not bad enough to treat. Lately I was diagnosed with mild sleep apnea and use CPAP therapy, but still feel very tired during the day.

My doctor. believes I have PLMD and wants to treat with Requip (.25). I'm reading that this is the standard treatment, but I am afraid to take yet another pill (already take Synthroid, atenolol, Lipitor, Zyrtec, Magnesium, Vit D, Slo-Niacin, CoQ10). I'm wondering about using marijuana, or a medical derivative, at bedtime - would this work? With the laws changing and medical marijuana being legal in many places, this possible treatment interests me.

Mary B.
Maryland, US

Medical Reply

Marijuana does help RLS symptoms. It works quickly (within 5-10 minutes typically) but lasts for only 1-2 hours. However, it usually must be inhaled and it is hard to recommend an inhaled product that may do damage to your lungs. Whether it helps PLMD is completely not known.

Furthermore, most experts do not recommend treating PLM except for unusual circumstances. You are most likely much better off not adding any additional treatment as long as your RLS symptoms are not too disruptive.


Sent: Tuesday, January 24, 2017 3:50 PM
Subject: RLS and natural treatments?

Hello to you .I have had RLS at night for a long time on and off, but it has now become a permanent resident with me every night, it is really like a monster in my life!

Have you any natural help that you could suggest for me?

Hazel R.

Medical Reply

There are not a lot of very good "natural" treatments. However, they include getting proper sleep, avoiding alcohol and the very many drugs that worsen RLS (see our website and medical alert card for more details), and make sure that your iron levels (as measured by serum ferritin) are adequate.

Otherwise, you should consider medication which should be able to bring you excellent relief.


Sent: Sunday, January 29, 2017 7:54 AM
Subject: Just realized I have RLS

Iím 56, and though basically in good health, I recently began having symptoms of RLS in my right leg. I didnít know this condition existed, and I will schedule an appointment to see my chiropractor this week (I see some information about possible lower back compression on a nerveÖI had a cervical spine fusion and two discs replaced in 2008). If adjustments donít help, Iíll schedule an appointment with my family doctor. I had a bunion/bone spur removal on my right foot Nov. 7.

I donít remember having issues before the surgery, but as it has gotten progressively worse rapidly, it is possible I just donít remember because it started out mild. I have seen some posts on your site (havenít read them all, but plan to) that talk about this condition occurring after trauma/surgery, but I did ask my orthopedic surgeon at my last post-op about it, wondering if it could be related, and was told he had not heard of any correlation to RLS after bunion surgery. I do also use Rx Estrace cream once-twice per week.

I overall do not want to take medications, but since I realized what was happening actually had a name/diagnosis, (I Googled leg feels the need to move when resting and discovered RLS) , I then Googled natural remedies and saw iron or potassium deficiencies could be the cause. I eat a lot of dark greens like kale, spinach, arugula, beet greens, etc., but donít usually eat red meat, so thought maybe taking a multi vitamin would help. Just started with Centrum Silver, plus drinking orange juice and eating more bananas. No improvement.

I ordered Restful Legs on Amazon, a natural aid with mixed reviews. No improvement. I donít belong to a gym, and itís winter so Iím not casually riding my beach cruiser bike around, so itís possible I need to add an hour of exercise to my day via an exercise DVD. I have had to leave our bedroom to allow my husband to sleep while I move around my leg and get up and run in place and do stretches. I need my 8 hours of sleep to function, and Iím getting about 5 hours. This is such a bizarre syndrome.

Any suggestions on natural healing would be appreciated, though in this case I would be willing to try a gentle, non-addictive medicine so I can relax in the evenings again. I remember relaxing used to be such a cozy thing to do, but itís a rare moment that RLS doesnít ruin it. Itís not just at nighttime, either. Iím on my feet most of the day as a ceramics studio manager, teaching but also doing various chores and tasks, lifting heavy kiln shelves loading and unloading the kiln, but when I sit, even now writing this on my computer, the sensation to move my right leg is happening.

Nancy B.

Medical Reply

There is likely little or nothing that your chiropractor can do to help your RLS. There are really few natural therapies that help RLS. You should have your serum ferritin levels checked and if not over 50-75, oral iron supplementation may be helpful.

There are several medications that can help relieve RLS symptoms. I would suggest starting with an alpha-2-delta drug (Horizant, gabapentin or Lyrica) which are definitely not addictive. These drugs may also help you sleep better and longer.

Surgery may have triggered your RLS, but there is nothing that needs/can be done now about what may have caused the RLS to be active.


Sent: Monday, January 30, 2017 1:28 PM
Subject: Maine law just forbade my methadone for RLS... Ideas?

Maine recently passed a law severely restricting all opioids. I assumed my physician would seek an exemption, but I was wrong. He was unaware of the law, and says he will taper methadone and put me on one of the many other meds that failed to help me in the past (those failures are why I qualified for methadone several years ago). I hope to find another physician, to whom I can put forth my case for an exemption.

Do you have any idea how Maine's exemption process works? There's an exemption for "palliative care" and a separate one for "hospice/end of life" care. I should think I'd qualify under the palliative rubric ("Palliative care" means patient-centered and family-focused medical care that optimizes quality of life by anticipating, preventing and treating suffering caused by a medical illness or a physical injury or condition that substantially affects a patient's quality of life, including, but not limited to, addressing physical, emotional, social and spiritual needs; facilitating patient autonomy and choice of care; providing access to information; discussing the patient's goals for treatment and treatment options, including, when appropriate, hospice care; and managing pain and symptoms comprehensively. [22 MRSA ß1726(1)(A): 2015, c. 203, ß2 (NEW).])

Methadone worked perfectly (10 mg morning, 20 mg at night). All previous medications had disabling side effects. I was unable to focus and concentrate, and had to walk with a cane and avoid stairs due to dizziness. I'm about to turn 70. I hope to be able to live fully until I die, and not be either confined to dozing in a chair or experiencing my entire body jerking every 5 to 8 seconds!

Sharon S.

Medical Reply

The new Maine opioid law is quite limiting but it does have some escape clauses for cases such as yours. The physician has to have taken 3 hours of extra CME (Continuing Medical Education) in order to prescribe opioids.

To prescribe your methadone, the physician would have to write ďmedically necessaryĒ for the high dose of methadone (which may exceed the upper limit depending upon which opioid conversion calculator they are using) on the prescription and that should take care of it. This exemption applies to chronic pain patients and it is very valid to have the physician state that he is treating chronic RLS pain.

There may be changes in the rules as of January 2017 but they are not yet easy to find on sites such as the Maine Medical Association website.

Several of us experts in the USA are currently working on a medical article supporting the correct use of opioids for treating RLS which should be quite helpful for physicians treating patients like you.


Sent: Tuesday, January 31, 2017 1:59 AM
Subject: RLS sufferer

Hello Doctor, how are you? I'm a 76 year old female. I've been struggling w/ RLS for over 10 years now. I have been taking requip since my diagnosis in 2006, but developed augmentation. By last year, I was on 7mg of Requip a day.

I finally saw a neurologist who decided to help me get off Requip. She introduced Gabapentin to my regimen and in the past three months, I've been able to go down from 7mg of Requip to 4. She also suspects I MAY have Parkinson's, and therefore prescribed me Sinemet along with the two other medications.

While I'm sleeping better than I have in years, I often feel confused, have noticed some memory loss, and my family is telling me I'm exhibiting signs of "mental agitation." Is this typical with the above combination of three meds? And do you think that Gabapentin will one day be able to replace Requip entirely? I'd like to eventually take as little medication as possible!

Lisa T.

Medical Reply
 

It is difficult to give you a complete answer since it is not clear whether you have Parkinsonís disease. We tend to see less problems with RLS augmentation in Parkinsonís disease patients even when they are on Sinemet (which causes the most amount of augmentation).

If you do not have PD, then adding Sinemet is a very bad idea since it will worsen the augmentation problem markedly sooner or later.

The best treatment for augmentation, is to get off all dopamine drugs completely. As you have already found out, gabapentin is only partially helpful. Typically, opioids are needed to get completely off the dopamine drugs. It is also likely that the gabapentin is causing your confusion and memory loss as it can be a very sedating drug.


Sent: Tuesday, January 31, 2017 6:49 AM
Subject: Do I have RLS?

 I'm 46 years old. I'm not sure is I have RLS and that's why I'm writing you. I never seemed to have a problem with my legs until I went on a no carb diet for 4 months now and lost over 60 pounds. I currently weight 199 pounds and am 5 foot 10. My legs feel like there's bugs or snakes in my calves. Usually only in the morning hours. It scares me and drives nuts. Not so much at night. Morning is terrible.

I don't even want to get out of bed, knowing what I'm in for. It doesn't hurt, just weird feeling of something crawling inside my calves. I've read about RLS and it says its a night time thing, not morning. So I'm confused. Should I see a doctor?

Tammy A.

Medical Reply

Although the typical presentation of RLS is in the evening/bedtime (and in fact, that is one of the diagnostic criteria), I have seen a few cases of RLS presenting initially in the morning.

If those strange sensations of bugs and snakes crawling in your legs occur at rest and are associated with an almost irresistible urge to move, and you get significant improvement when moving (like walking), then you most likely have RLS.

If you your symptoms are disruptive and bothersome, then you should consider medication and see your doctor or one that is familiar with treating RLS.


Sent: Friday, February 03, 2017 5:06 AM
Subject: Quad pain

I have been diagnosed and treated for RLS with Requip for about 2 years, yet a neurologist told me it wasn't RLS but it was cause from my back problems. I go to a pain clinic & even though the Requip was helping (4 mg broke in half and taken early then later. It helped but I was nauseous. The first doc at the club mic had put me on this medication but my present doctor cut my ropinirole down to 2 mg only and said that was all that could be given.

Well, it doesn't help all night. I wake after (at the most) 2 hours unable to go to sleep and horrible pain in my quads only. I do have jerks with it. I can't do anything or go anywhere. Had to quit church because when I sit... it happens. I don't know what to do. I already take hydro code for RA. I've had RA since I've been 27 & had both knees replaced and scheduled for hip replacement . I'm at my wits end. I can't sleep. It hurts so I cry & use a rolling pin over my quads. It's like the muscles are contracting and it is so painful.

Dede M.

Medical Reply

Your response to Requip make it very likely that you have RLS (since Requip will not help any other discomfort except for RLS).

Higher levels of Requip (like 4 mg) tends to cause augmentation (a worsening of RLS with time from taking a dopamine agonist like Requip) over time so keeping the dose low is a good idea. However, it is quite likely that you already are experiencing RLS so a different strategy is necessary. You current doctors and neurologist probably have no idea how to treat this problem (which is very treatable by an RLS expert).

Attached is a recent article that several of us experts have published recently discussing the treatment of this problem.


Sent: Sunday, February 05, 2017 3:42 AM
Subject: Ferritin levels for RLS?

I no I wrote to you some weeks ago but my GP has said that my ferritin level is to low & needs to be higher at the momemt it is 92mcg/L but my GP as said it has to be 200mcg/L. I have disagreed with him but, (I know this is asking to much) do you think you could send me proof that 92mcg/L is not too low.

Susan T.

Medical Reply

There are a couple of articles that show that with oral iron supplementation that ferritin levels of greater than 50 mcg/L or more currently greater than 75 mcg/L provide help for many RLS patients. The upper limit was not well defined.

We have more recently found that driving the ferritin level much higher (typically over 200 mcg/L with intravenous iron, so your doctor may be correct) has a much more profound effect on RLS symptoms. That is my goal when I transfuse a patient with intravenous iron. It is very hard to get serum ferritin above 75 mcg/L with oral iron which is why we resort to intravenous iron therapy if we really want to increase serum ferritin levels adequately to control RLS symptoms.


Sent: Monday, January 2, 2017 7:08 AM
Subject: Ropinirole vs pramipexole

I recently switched from pramipexole to Ropinirole. I did this because my insurance considers Ropinirole a tear 2 drug while pramipexole is considered a tear 3 drug and costs a lot more. The pramipexole dosage was . 5 mg and seemed to work. The Ropinirole dosage was 4 mg. the Ropinirole worked for about 5 days. On the 6th day it worked but I woke up 2 hours after taking it with twitching legs. After 2 hours of suffering I took a pramipexole tablet.
Was able to sleep after about two hours.

Should I give up on Ropinirole or give it more time. It is very difficult to function when sleep deprived?

David K.

Medical Reply

The issue with your change from pramipexole to ropinirole is that the ropinirole does not work as long as pramipexole. Furthermore, although the change in dosage is reasonable, some patients do not find ropinirole to be effective even at 8 times the dose of pramipexole.

It is hard to understand why your insurance would put a generic drug like pramipexole to tier 3 (it is typically very cheap even if you pay cash and I would suggest that you check out the cash price). Furthermore, since the ropinirole is not working well for you, you should request that your physician ask for an insurance exception for the pramipexole so that the cost may come down.


Sent: Wednesday, February 15, 2017 6:03 PM
Subject: RLS and ferritin levels?

What is your recommendation for minimum serum ferritin levels for a RLS sufferer? I see varying reports ranging between 50 and a hundred

Kim W.
UK

Medical Reply

Our general recommendations about iron are based on only a few studies. We know from those studies that increasing the ferritin levels above the 50 (first study) to 75 (second study) range often (but not always) helps RLS symptoms. However, it is often very difficult to increase the serum ferritin by oral iron (due to issues like poor absorption, constipation, stomach upset, etc.).

When giving intravenous iron infusion, I have found that some patients donít improve their RLS symptoms until they are above serum ferritin levels of over 130 (and they worsen below those levels). We still have a lot to learn regarding optimal serum ferritin and iron levels. The issue is likely how much iron we can push into the brain (which may vary considerably) and the only way to be sure would be to do a spinal tap (which is not likely going to happen for most of us).















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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 116.
http://www.rlshelp.org/rlscomp116.htm
This web site was last modified on Saturday, February 18, 2017.
Cartoon above was created and drawn by Robert Van Den Berghe.
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