Patient letters on RLS symptoms and remedies- Page 123

Sent: Wednesday, December 1, 2021 5:42 PM
Subject: Doxylamine succinate

Hello SoCal RLS Support Group,

I know that over-the-counter sleep aids that contain diphenhydramine can cause or exacerbate RLS symptoms. What about the over-the-counter sleep aid doxylamine succinate? Has this been known to cause or exacerbate RLS symptoms?

Viví J.
Indiana

A Medical Reply

Unfortunately, doxylamine is just as bad as Benadryl (diphenhydramine);

Sent: Monday, December 6, 2021 2:55 AM
Subject: Question about gabapentin for RLS

I have heard so many wonderful things about your willingness to answer questions on restless legs that I hope you won't be bothered by answering one more. I live in the US and follow you in NightWalkers and also belong to Health Unlocked in the UK where members often comment on the answers you have given .

Which is the best way to take gabapentin if one is taking 1500 mg at night?

1. 300 mg 6 hours before bedtime, 600 mg 4 hours before bedtime, then 600 mg 2 hours before bedtime or
2. Split the dose 1/3, 2/3 which would be 500 mg 4 hours before bedtime and then 1000 mg 2 hours before bedtime.

Linda S.

A Medical Reply

The issue with gabapentin is that most people (like 75%) do not absorb doses of this drug in doses above 600-900 mg. When you take more (in a single dose), you absorb only a part of the extra (above 600-900 mg) so the extra does not add that much. As such, your first plan is better but you may not absorb a significant amount of your second and third doses as they will likely compete for absorption with the earlier doses.

This is not the case for Horizant which has been engineered to deliver gabapentin more efficiently. This also does not occur with Lyrica (pregabalin) which is now less expensive as it is available generically and would be effective with only one or at most 2 doses in the evening.

Sent: Friday, December 31, 2021 2:03 PM
Subject: Anxiety with Refractory Restless leg Syndrome

I am still working as a Registered Nurse but finding this more difficult. I am 73 years old and I live in Nottinghamshire. My current medication is Ferrous Fumarate, Gabapentin 600mg [weaning down to 300mg ] one hour before bedtime. I am also on a Buprenorphine patch 20 mcg just reduced down from 25 mcg. My GP Practice will not prescribe the Buprenorphine tablets. I am trying to get to see a Neurologist with great difficulty. I did see one privately but his information was out of date. Nine weeks ago my GP prescribed a Buprenorphine 52.5 mcg patch which I stopped after two weeks as I had breathing difficulty and an acute anxiety attack at the same time . I never before suffered with anxiety but I felt I would die. I have been on the lower dose patch for 4 weeks and apart from anxiety attacks I feel my Restless leg Syndrome is more under control. I have also had nausea and loss of appetite and lost two stones in weight

I speak with my GP regularly and have been referred for counseling. My GP thinks I may have Post traumatic stress syndrome following Augmenting on Mirapex in April . Another GP told me at that time to stop the medication and did not prescribe anything to help this process. I was also anemic and had a Colonoscopy and Gastroscopy which were both normal. I have had a dreadful year as I have had little sleep until recently and my legs were moving almost constantly

These anxiety attacks are not disappearing and really worry me. I try meditation and breathing exercises. Will they go again do you think in your experience? I really want to be the person I was before they began . All my family notice the difference in me. I am at a complete loss of what to do for the best. The attacks have made my life quite difficult. My GP offered Mirtazepine or Sertraline but they interact with Buprenorphine and I would rather not have any further medication. I reduced the strength of the patch today to see if that would help me as it was being on the higher strength patch that the anxiety started.

Susanna R.

A Medical Reply

You are in a tough situation since your current doctors are not providing you with optimal care.

You would likely do much better with Temgesic pills as you can then target the evening/nighttime when RLS symptoms tend to be more active and not have buprenorphine in your body for 24 hours daily. That might markedly reduce the side effect of anxiety.

Many RLS patients are anemic (iron deficiency) and replacing iron intravenously can be very beneficial. Oral iron rarely helps as it cannot get enough iron into the brain where it is needed. There are only 3 iron products that are effective for IV iron replacement for RLS (the others work fine for regular anemia).

You might want to continue on gabapentin as it may reduce anxiety.

Also, Zofran is very good at reducing nausea and does not worsen RLS like other products. Most antidepressants worsen RLS.

Sent: Tuesday, January 11, 2022 4:19 PM
Subject: Iron infusion


I have recently received my third dose of an iron sucrose infusion. I was disappointed to read that compared with ferric carboxymaltose, iron sucrose infusions for treatment of restless leg syndrome are inferior. I was wondering if you had any anecdotal evidence that iron sucrose may provide any relief at all. What level should my ferritin and TSAT levels reach before requesting another infusion?

Bruce

A Medical Reply

The difference between the "good" and "bad" IV iron preparations are that the good ones are slow release (so that they can keep releasing iron into the brain slowly which makes it easier to absorb into the brain) while the bad ones are quick release so that most of their iron cannot be absorbed into the brain.

Iron sucrose can be used but up to 5 infusions of smaller amounts (200 mg) must be given on a weekly basis to get the same effect as one 1000 mg infusion of ferric carboxymaltose.

Sent: Saturday, January 22, 2022 6:17 AM
Subject: Advice about buprenorphine


I have been in contact with you previously for guidance. I am almost 80, live in the UK and have suffered RLS all my life. I also suffer spinal stenosis with sciatica. I was diagnosed with blood cancer nine months ago and take hydroxycarbamide daily with Xarelto (blood thinner) which is keeping this under good control.

I was treated with oxycodone slow release 15 mg. daily for two years but this became less effective. At that time you suggested Belbuca (18 months ago). The only type of buprenorphine my doctor would prescribe was Butec patches which he started at 20 mcg patch (7-day). He reduced this very quickly over a month and so induced severe withdrawal from the oxycodone. I suffered severe panic attacks, anxiety and depression. I was unable to get antidepressants because of bleeding risk so I have had very good CBT which was really helping.

I have been using the 15 mcg patch which was working well but really only covered me for five days when I would suffer low mood and poor sleep until new patch was applied. I had second Covid vaccine in September and third in December (Pfizer). This may not be important. However, since about that time the patch has not been working well at all and I am suffering what seems like constant withdrawal symptoms daily – depression, anxiety, breakthrough RLS, heart pounding, shaking, crying, feeling cold, etc. When I told my doctor (a new surgery) she said it sounded as if I should decrease to 10 mcg patch (an immediate third reduction) as she thought I was getting too much rather than too little. I confess I do not follow her reasoning. She seems very against an opioid at all and avoided answering me when I asked what I could have in place.

If I could ask you advice, my questions are:
1. I wonder should I try asking for Temgesic tablets (or perhaps Subutex) to see if I could get more even coverage instead of 5 days out of 7.
2. I liked your suggestion of Belbuca but I do not think I stand much chance of this. However, I am willing to ask her. Can you tell me what dosage would be appropriate and how would I change from the patch?
3. I know buprenorphine is used to help depression but I wondered if it might be adding to mind. When I first started the 20 mcg patch I felt great but then the doctor reduced it quickly and that is when the panic, depression, etc. started.
4. My problem is that if the buprenorphine is taken from me I seem to have run out of options. I obviously cannot take the usual anti-inflammatory pain killers because of bleeding risk. Is there anything else you can suggest?

My CBT Consultant feels I have worked very hard and made good progress so it is upsetting to feel that I am losing all I have accomplished. I awaken at 5.00 am feeling so low and each day is more of a struggle. I can cope with the cancer diagnosis all right but the very low mood is terrible.

Barbara K.

A Medical Reply

The buprenorphine patches do not work that well for RLS since it gives a steady dose around the clock while shorter acting medications can be targeted for the afternoon and nighttime when RLS is worse (therefore much of the patch medication is wasted when not needed higher doses are needed).

Belbuca is not available in the UK but Temgesic is a very good alternative. The starting dose is 200 mcg (remember, that is micrograms, not milligrams so it is a much smaller dose than the 2 mg of Subutex). The dose can be increased (or even 2 doses per day) as needed.

I would suggest avoiding antidepressants (if possible) as most all of them worsen RLS.

 Sent: Sunday, February 6, 2022 1:18 AM
 Subject: I would be very grateful for your advice about my restless leg syndrome

 I will try to be My questions are as follows and I’m sorry I can’t see any way of explaining their relevance without the following explanation.

1. Is Gabapentin likely to be worth a trial, possibly not cause the balance and sudden hunger problems described below with Pregabalin and at what dose?

2. Should I try to ask for an IV iron infusion and if so which is best?

3. How sure are we that RLS sufferers don’t run into addiction or tolerance problems with opiates ( adverse effects tend to creep up later in general eg augmentation with the DA’s) 4. Any other ideas/anything new on the horizon?

I’ve had RLS for many years. I am a 71 year old female.

 It runs in my family but mine is much more severe than others - never a night without for years, usually several wakes thrashing about each night, maximum sleep length 2 or occasionally 3 hours at a time. These necessitate pacing around, hot baths, puzzles etc to ‘switch off’. It’s easy to fall asleep if no symptoms at the time. It begins around 7-9pm, wears off about 7 or 8am.

 The thing that probably makes mine worse is I have also a peripheral neuropathy - Chronic Inflammatory Demyelinating Polyneuropathy, starting around 15 years ago. Around 7pm my feet switch from numb to numb & painful at the same time as restlessness starts.

 I am on no exacerbating medicines - I’ve read the lists & tried without my longstanding Diltiazem for hypertension for around 2 weeks but it made no difference so I restarted.  I tend to have a high Hb. I take ferrous bisglycinate to try to raise Ferritin. It is sometimes 88. I haven’t got it higher but am trying again.  I have always been wary of the dopamine agonists before anyone was aware of augmentation and am now glad about this. I was a doctor myself.

 Way back before it was recognized that Pregabalin helped RLS I was prescribed it for my neuropathy pain. The first night I took 50mg and it was like a miracle resolving my RLS. I even alerted the drug company who said they had received anecdotes & were about to run a trial.

 Over the years the effect wore off. I gradually increased to 150mg which also became ineffective. Increasing further felt unwise as my balance was getting worse ( now even worse  due to neuropathy ) and I had an unpleasant effect where I would suddenly become very hungry & sweaty & shaky, my weak muscles would become much weaker and I had to grab eg biscuits to allow me to keep walking & I worried I would fall. I think it was hypoglycaemia. ( not Diabetic ). I had also put on a lot of weight.

 I came off it gradually & with difficulty.  Since then I have been getting even worse. I could still work for a long time. Now it is pretty disabling though I maintain hope.  I have 30mg Codeine which I take once at night. I know about the recent use of eg Buprenorphine.  I am terrified of setting myself up for even more problems eg addiction for the future as I get older.  I have just tried Dipyridamole after learning of a Spanish research paper & having a sympathetic GP. It hasn’t helped.

 I am about to try a low oxalate diet that a writer swears helps him.  I am one of those who has the strange effect of an improvement during a fever and also one who finds the counterintuitive benefit of coffee helping to switch off an episiode and aiding return to sleep. I didn’t take coffee while taking dipyridamole as I know it counteracts the effect.

Alison M.

A Medical Reply

Typically, gabapentin is not as reliably absorbed as pregabalin and at equally therapeutic levels, most often causes the same side effects (with occasional exceptions).

 You might benefit from an iron infusion but we usually like to see iron & iron saturation levels. Without low levels , insurance companies may not cover the treatment. We suggest INFeD, Injectafer or Feraheme.

 As long as you stay within reasonable levels of opioids (maximum of 60 morphine equivalents per day) the risk of tolerance/dependence or addiction is extremely low.

Sent: Sunday, February 13, 2022 11:03 PM
Subject: Buprenorphine issue

I am 64 and have suffered with refractory restless legs for about twenty years. I've been on all combinations of drugs known to man for it including alpha 2 ligands and dopamine agonists. I've augmented horrendously when being mis-treated by a neurologist who simply added more and more pramipexole and other medications over a nightmare five years. My GP and I now do our best to manage my condition with information from your book, RLS.org and research papers etc. And information gleaned from the Restless leg forum on Health Unlocked.

I am now on Norspan patches: 15 mcg buprenorphine and have been for two years nearly. The control of my symptoms is great and I'm so grateful for finding this medication, it was a lifesaver..
The issue that I have with it, is that ever since I started on the patch- it's almost impossible to get a prescription for the other forms of it; I haven't slept solidly. I've never been a person who suffers from sleepiness on any medication, and even wake up promptly after anesthetics. With the buprenorphine, I do go to sleep but the sleep is so shallow that any sounds at all wake me and I often lay awake for ages, quite comfortable, but just not sleeping, for hours. On the nights before the days that I work, (four nights a week), I take some zopiclone and that gives me a bit deeper sleep but isn't the complete answer either.

My sleepiness is getting to the stage when I've fallen asleep in the middle of a conversation at work- and I was the one talking. I am constantly battling falling asleep and invariably fall asleep if I sit down in the daytime. The sleep in incredibly heavy and very hard to rouse from. I have sleep apnea but that is treated with a CPAP machine. I'm beginning to wonder if I have to find another medication to take over from the buprenorphine but given the hell I've been through previously, don't really want to. I am wondering if you could advise me on what to do from here? My thoughts of what's left is methadone and cannabinoids, both of which are almost impossible to get prescribed here.
I do hope to hear from you and am so grateful that you are accepting of emails sent with requests for advice. Thank you very much in advance.


Stephanie P.

A Medical Reply

.Next day sleepiness is somewhat unusual with buprenorphine products. It is possible that your obstructive sleep apnea may have worsened (or some people develop central sleep apnea with opioids) so rechecking your CPAP effectiveness might be helpful (adjustment of settings or change to BiPAP might be needed).

Otherwise, it may be difficult to figure out what to do as this is a more unusual problem with buprenorphine.

Sent: Monday, February 21, 2022 2:27 PM
Subject: RLS

I'm a 49 year old female living in Oklahoma. I had originally reached out regarding the use of pramipexole and trying to get off of it after several years of miserable attempts. My highest dose of the pramipexole was 3.5mg. After speaking to you and doing some serious phone calls and footwork I was able to find an agency that would work with me on the buprenorphine. I have been taking 2mg since September 2020. In the interim, 2021, I had three surgeries. February of 2021 I had an arthroscopic surgery to repair two torn meniscus, in July I had a total knee replacement on the left knee and then in October I had a total knee replacement of the right knee. For all three of those I had to come off the buprenorphine to be able to get through the surgery with the use of regular pain meds. I only cleared 4 days for the first surgery and ended up having to have a nerve block because none of the pain meds were taking. The doctors here said that was wrong and that I should have been clear of the buprenorphine easily in the three to four days. Needless to say I made sure I was clear for the 3 weeks prior to both of the total knee surgeries and went back to the pramipexole during that time.

Fast forward to now, it took me another 8 weeks or so to pull back off the pramipexole completely as the withdrawal features/augmentation escalated. I've been off entirely since January 1st. Since being back off pramipexole completely again and just the 2mg sublingual buprenorphine, the breakthrough symptoms have kept up. I am averaging 4 hours most nights before RLS starts up. I can sometimes get up and move and then go back to sleep but not usually and my fatigue is through the roof, differently than before, it's difficult to explain. I do take Vyvanse and have experimented with times I take that to not at all and I do believe that it is now affecting the RLS where it didn't previously, so there is that added bump in the equation. Like I said though, I have always taken it except for those 8 months that I was doing the surgery, rehab, heal, surgery time last year.

In the wonder of things, I tried to increase the 2mg to what equates to probably 2.5mg a few nights to see if that actually made a difference in the evening and I think it did - and that is where we land. The provider I was working with has left the agency and I have a new person. She has zero knowledge and I believe is just making the assumption that I am drug seeking when I talk about trying an increase even for a week to on an 'approved' test without running out. I do not know how to address the situation properly at this point without just sounding angry because there does not appear to be anything that I can say correctly.

Erin E.

A Medical Reply

It is most likely that the surgeries have triggered worsening RLS. This happens reasonably often for reasons that are not understood. It is also possible that the 3 weeks of pramipexole ratcheted up the RLS but that is less likely.

If an increase in the buprenorphine is effective, that is likely the best course of treatment. Other than the previous opioid article, there is really not that much new to send (except for the latest guideline article which now includes buprenorphine and is attached). Other buprenorphine preparations are really very similar except for Belbuca which comes in smaller doses and can be adjusted more finely. Methadone may be more potent but may have more side effects than buprenorphine (although this can vary from person to person and most people tolerate methadone and other opioids very well).

It is most likely that the surgeries have triggered worsening RLS. This happens reasonably often for reasons that are not understood. It is also possible that the 3 weeks of pramipexole ratcheted up the RLS but that is less likely.

If an increase in the buprenorphine is effective, that is likely the best course of treatment. Other than the previous opioid article, there is really not that much new to send (except for the latest guideline article which now includes buprenorphine and is attached). Other buprenorphine preparations are really very similar except for Belbuca which comes in smaller doses and can be adjusted more finely. Methadone may be more potent but may have more side effects than buprenorphine (although this can vary from person to person and most people tolerate methadone and other opioids very well).

Sent: Thursday, March 3, 2022 3:31 AM
Subject: Request for advice regarding Neupro patch

First of all I would like to just thank you for all the help and assistance you have provided to so many of my fellow RLS sufferers. I have seen your name mentioned very favorably so many times on the RLS pages of HealthUnlocked for the service you have provided people who are not even patients of yours. Now I would like to ask you a question myself.

I currently apply a 4mg Neupro patch at 4pm, and then I take 600mg of gabapentin at 5pm and a further 600mg at 8.30pm. This has worked well for quite a while until recently, as it would appear that I am suffering from augmentation (more severe symptoms, symptoms manifesting earlier in the day, and symptoms appearing in other parts of my body (my arms)). I have agreed with my doctor that I should start to reduce my Neupro medication.

The only thing that the Neupro medication instructions say on how to slowly and safely stop or reduce the medication is to consult your doctor. My doctor has prescribed me the 3mg patch and is saying that I should just drop down from 4mg to 3mg in one go, however I have read so many cases of people suffering from severe withdrawal symptoms when they have reduced their dopamine agonist medication(s) too abruptly and/or too quickly that I was thinking that reducing by 0.25mg every 2 or 3 weeks would be the best way to proceed. Would you be able to comment on what you think would be the best Neupro reduction regime in my case? I also welcome any other recommendations with regards to my RLS medication regime that you see fit.

Simon H.

A Medical Reply

The maximum approved dose of Neupro for treating RLS is 3 mg. Since you have already exceeded this dose, the risk of developing augmentation were significantly increased (I try to keep the dose at only 1 or 2 mg if possible). The issue is that reducing the dose (slowly or quickly) will sooner or later cause a marked worsening of RLS. It might be less painful while tapering smaller amounts and the patch can be cut (despite what the package insert might say) but you should put tape on the cut edges to prevent the patch from falling off. Once you hit a critical dose (the lower level can vary from patient to patient) or stop the Neupro completely, the RLS will dramatically worsen.

Your dose of gabapentin is already near maximum (higher doses do not get absorbed into the body very well) so that is not an option.

What I do is transition the Neupro (or other dopamine drug) by using opioids. That is very effective and most patient just stay on a low dose of opioid indefinitely. However, in the UK, you may find difficulty finding a physician who will prescribe opioids for RLS.

Sent: Tuesday, March 8, 2022 2:38 AM
Subject: Domperidone and RLS

I have Restless Leg Syndrome and severe acid reflux, Gerd. My doctor wants me to take Domperidone as part of my treatment. I understand it works on dopamine receptors. Do you have any advice about whether this will affect my RLS?

Anne B.

A Medical Reply

Interestingly enough, Domperidone is great for RLS patients even though it works through the dopamine system. It only acts on the peripheral dopamine receptors (not on the brain receptors) so does not worsen RLS. Before the newer anti-nausea medications (like Zofran) became available, we used to have our RLS patients get Domperidone from Canada or Mexico.

Sent: Friday, March 18, 2022 9:32 PM
Subject: Methadone failure

I have written in the past and you have been most helpful. I have run the gamut thru the different treatments including Requip and Mirapex that led to augmentation, ultimately landing on my current dose of 2.5 mg of methadone at around 6 pm followed by an additional dose of 5 mgs at around 9:30. This was working very well till about 2 weeks ago when it quit controlling my rls.

I end up walking the floor ,taking hot showers till eventually I am able to get to sleep. Having read many of your past responses to other members, I was under the impression that once you found an effective amount that controlled your symptoms, that Methadone would not require an increase in that dosage.

I would appreciate any help as to what you might think my best approach might be going back to my doctor. He has been very forthcoming in listening to my telling him about treatments for my rls as he is just a general practitioner who is not really knowledgeable about RLS .

Would an increase in dosage be a reasonable approach, or is there any new combined therapies that you would suggest I try.

After having my RLS under reasonable control for a number of months ,it’s troublesome that my current treatment is not working as of late.

John

A Medical Reply

Typically, once an effective dose of methadone is found, it may last for years or decades. However, there are issues that may worsen RLS that may trigger a need for more medication.

These issues include medications that worsen RLS (including OTC meds, see our website for further details), poor or decreased sleep, increased stress, decreased iron or ferritin levels, etc.

If none of the above a relevant, then adding an alpha-2-delta drug (like gabapentin or pregabalin) or increasing the methadone (you are still on a reasonably low dose) are quite reasonable considerations.

Sent: Tuesday, March 22, 2022 12:27 PM
Subject: Pregabalin Question


For 24/7 RLS, when is the best time to take the two 150MG doses of pregabalin? First thing in the morning and last thing at night before bed? Or ideally an hour before bed.

I currently take my first one at 7AM as soon as I wake up and the second one at 7PM, even though I don't go to bed until after 10PM.

Cahir M.

A Medical Reply

We usually prescribe pregabalin about 1-2 hours before symptoms occur. Generally, we use this drug mostly in the evening as it can cause sedation which can interfere with daytime function. For patients who do not experience daytime symptoms (very few), another dose can be added in the daytime (such as you are doing).

A  Reply from Cahirr

Sent: Tuesday, May 3, 2022 11:51 AM
Subject: Supplement use and Pregabalin


I recently upped my dose of Pregabalin to 200MG twice daily from 150MG twice daily. It's been five weeks with no difference.

I use quite a few health supplements during the day like Magnesium, Potassium, Alpa Lipoic Acid + Benfotiamine. I space these out a lot during the day,

Do you believe these could be reducing the effects of my Pregabalin and I should discontinue or reduce my use of these Supplements as truth be told, Im not even sure I receive much if any benefit from them.

Cahir M.

A Medical Reply

Supplements are not controlled/evaluated by government agencies (like the FDA here in the USA) and do not have to be studied or need clinical trials to make it to market. We therefore know very little about supplements and what they may or may not do to prescription medications. However, it is more likely that your supplements have little to do with the ineffectiveness of pregabalin.

Sent: Tuesday, March 22, 2022 4:04 PM
Subject: Methadone constipation


I am just beginning to make the transition from using pramipexole to methadone due to augmentation and am experiencing problems from constipation which doesn’t seem to be going away. Could you please help me with the following questions:

What would you recommend for dealing with opioid- induced constipation? I am concerned about the long term effects from using laxatives and was wondering what I could take that would minimize the possible side effects. My Specialist suggested sennoside but it looks like that is only for short term use as it might cause problems with the bowel or other side effects. What about Metamucil or Restoralax?

Beverly K.

A Medical Reply

Sennoside (Senna) is a bowel muscle stimulant that should not be used longer than 1 week. Your bowels may become dependent on this medication if taken in the long term. Restoralax (MiraLAX here in the USA) is quite safe for the long-term and I have my patients add it when needed (even on a daily basis).

I typically have my patients take a stool softener (docusate) and a high fiber cereal (like Fiber One which has 6 times the fiber as one spoon of Metamucil) with lots of fluids. If that does not work, I add a bowel opioid blocker like Movantik or Relistor.

The above treatment is both safe and effective for 99% of my patients with opioid induced constipation.

A Reply from Beverly

Sent: Tuesday, August 2, 2022 1:39 PM
Subject: Re: Nausea with Methadone

I have recently switched from Methadone 6mg to Suboxone 1mg to treat my refractory restless legs. I am still experiencing nausea after being on Suboxone for over a week. I have tried using Zofran to deal with the nausea but it hasn't helped. Nothing has worked to reduce the nausea except taking Nabilone and that has had a minimal effect. I have been suffering from nausea for over two months now and continue to lose weight. I have had an abdominal ultrasound and a full set of blood tests, all of which were normal.

I am so distressed because my specialist says that I might have to go back to taking pramipexole because there doesn't seem to be any other options. I went through hell withdrawing from pramipexole and am so worried that this is the end of the road.

Beverly K.

A Medical Reply

You are in somewhat of a difficult situation since you are having trouble tolerating medications. Typically, I see much less side effects with the buprenorphine containing Suboxone then with regular opioids.

Another idea would be to add pregabalin/Lyrica starting with a fairly low dose such as 50 mg and slowly increasing every 5 to 7 days until you find an adequate dose but does not cause side effects such as sedation next day. With that, you may want to try a quarter of the Suboxone (it is much easier to get a quarter of the Suboxone if you use the films rather than the tablets). Perhaps with a lower dose of the Suboxone, you may experience fewer side effects and the addition of the Lyrica may help you get by without a lower dose.

Sent: Thursday, March 24, 2022 4:20 AM
Subject: Gabapentin dosage

I have emailed you before. I am 77 years old, have RLS and have been on pramipexole (.25mg) for 15 or 20 years. I told my neurologist that I wanted to cut down on it and he prescribed 300 mg gabapentin. Now I am familiar with the Mayo Clinic’s algorithm and know I should be taking 100 mg. Is there any point in going back to the lesser dosage? I thought it might help me function in the day time and give me less of a hangover. I

 have a part time job and need to be clear headed. Trying to get off pramipexole scares me to death for many reasons but especially because of my job.

Trisha N.

A Medical Reply

The bad news is that it is very hard to get off pramipexole using gabapentin or similar drugs. I generally do start with 100 mg to avoid side effects in patients over 65-70 years old but many older patients can tolerate doses even higher than 600 mg. However, it is always best to start low and slowly go higher as needed.

If you really want to get off pramipexole (which is a good idea), then opioids are the best choice. Otherwise, your chances of success are quite low.

Sent: Wednesday, March 30, 2022 9:21 AM
Subject: RLS pain in- or around pelvic floor????

Have you ever met women in your career who feel the painful RLS symptoms especially in and around her pelvic floor? At first my symptoms looked like beginning cystitis.
I never meet anyone around the platforms, and my docters never heard of this place to have RLS.

My pain comes irregularly, especially in the afternoons and evenings, and increases with age (I am 72). The pain is now at times almost unbearable. I have been a bad sleeper for more than 20 years. The usual medications react the same to me as in other RLS patients. I am now on gabapentin again, 1.000 mg/day. Pramipexole (short time) and pregabalin (up to 300 mg) had too many side effects. I have little trouble with my legs, and I do have PLMD at night.

Mia P.
Netherlands

A Medical Reply

RLS can occur in any body part including the pelvic floor although that is one of the rarer locations. 

However, to prove that your pelvic pain/discomfort is due to RLS, it should get better with movement (like walking which should take care of any other RLS symptoms). If that is the case, then there are other treatments to consider.

Sent: Wednesday, April 13, 2022 11:03 AM
Subject: Temgesic

I am a woman of 91 years old and live in the U.K. I have suffered with RLS since I was 22 years old. It was fairly mild when I was young but over the years the symptoms have become worse and worse until now I have RLS day and night very severely. I have taken a whole raft of medicines over the years, some made me ill, others did nothing at all. Four years ago I was prescribed Tramadol 50mg and this has helped to lessen the symptoms to a tolerable level. However they have completely lost their efficacy and so eight weeks ago I saw a neurologist who has prescribed Temgesic. At his request I stayed on 100mcg for a month and then 200mcg for another two weeks.

During this last two weeks I have gradually increased the dose so that now I am taking 400 mcg. Luckily I have not experienced any side effects but equally I have not had any lessening of my symptoms either day or night.  I am so disappointed as this was to be my miracle drug enabling me to have some peace at last during the day and evening and some sleep at night. Is it unusual for this to happen and where should I go from here?  I look forward anxiously to your advice. I should tell you that I am gradually weaning off Tramadol and am down to two daily from five. 

Beryl T.

A Medical Reply

The Temgesic may make the tramadol not effective. We typically stop all other opioids including tramadol when starting buprenorphine containing drugs like Temgesic for that reason.

Since the dose of Temgesic is in mcg (1 mg  = 1000 mcg), your dose of Temgesic is still relatively low. I may go as high as 1-2000 mcg of buprenorphine and my average dose is about 150 to 450 mcg per day. You may just need a higher dose to get relief.

Sent: Tuesday, April 19, 2022 12:41 AM
Subject: Buprenorphine anxiety help please

I am in the UK and have contacted you previously for advice after suffering badly on oxycontin with poor RLS coverage and very severe anxiety. You recommended temgesic but I have been absolutely unable to get this without seeing pain clinic for which there is a very long waiting list. They did however allow buprenorphine in patch form with detailed instructions for how to proceed slowly weaning oxycodone as increasing patch strength. I checked this approach and I can see it is the standard way to transfer from opioids to the patch.

I started buprenorphine in patch form 5mcg just over 2 weeks ago. Initially I had a wonderful response with much reduced RLS, better sleep and greatly reduced anxiety. I have just started my 3rd 5mcg patch on Sunday but am now experiencing severe anxiety/panic for the past couple of days. I fear the buprenorphine is causing the same trouble with severe anxiety that the oxycodone caused.

 really want this to work, please can you advise if there is a medication I can add to help? I do not respond well to pregabalin, it makes me seriously depressed even at a very low dose. Would trazodone help?
I fear that opioids are not going to be the answer for me due to the awful anxiety.

Please can I ask what you suggest for patients who have suffered severe augmentation on ropinirole but are unable to take opioids? My general practitioner is eager to help but at a loss to know what to do.

Annette L.

A Medical Reply

It is less likely that non-opioid therapy can help your RLS adequately. It might be worth trying pregabalin or gabapentin as they may offer some relief.

There is a chance that Temgesic might help your RLS without causing anxiety as you can dose it only as needed later in the day compared to around the clock treatment with the buprenorphine patch (you may have to consider a private pain clinic). However, it still might cause anxiety in which case you are stuck.

If your ferritin levels are low (less than 100) then an iron infusion may also help.

A Reply from Annette

Sent: Wednesday, April 20, 2022 12:58 AM
Subject: Re: Buprenorphine anxiety help please

Sadly I cannot take Pregabalin because even at a very low dose it caused deep depression. Your suggestion for Temgesic is interesting but I cannot afford to go privately so will have to hope for a pain clinic appointment soon!

Somebody on the RLS forum said you had suggested Trazodone for anxiety related to Temgesic, is this an option? The anxiety is very severe.

Lastly please, I augmented very severely on Ropinirole, I hate to think of ever going back on a dopamine agonist and would not if there was a risk of augmentation but I am desperate.
Is it possible to rotate ropinirole at low dose say every 2 weeks with an opioid or would this eventually cause augmentation? If you can direct me to any papers on this approach I would be very grateful.

Annette L.

A Medical Reply

Trazodone does not worsen RLS but is a very weak/poor antidepressant. Its main use is from its sedation side effects when used as a sleeping medication.

I do rotate DA drugs with opioids (usually due to side effects that occur with opioids when taken for more than a few days or weeks in a row). I have the patient take the DA drugs from a few days in a row up to a few weeks. Usually augmentation will not recur with this plan but if it does, then a shorter course of DA drugs is recommended (until it is short enough that augmentation does not occur but this can vary considerably from patient to patient).

Sent: Tuesday, April 19, 2022 8:02 AM
Subject: RLS and high BP

I have been recently diagnosed with A-Fib and my cardiologist wants me to take BP meds. He is not familiar with RLS and does not seem to take it seriously. Metoprolol caused worse sleep issues. Currently taking Lisinopril which seems to make my RLS worse. Do you have a recommendation of BP meds that do not make RLS worse? I have tried to research it without much luck.

Mara R.

A Medical Reply

There are no known interactions between blood pressure medications and RLS.

Sent: Saturday, May 7, 2022 12:38 AM
Subject: Ritalin for ADHD and RLS (patient Charles Kean)

I have been on Temgesic (low dose (200/300mcg which unfortunately has not helped ease symptoms up until recently. I saw a psychiatrist (hoping to maybe be prescribed methadone) who diagnosed me with severe ADHD. There is a link between ADHD and RLS I believe? He prescribed me Ritalin 10 (half 10mg twice daily) which I have been taking for 3 days. His reasoning: control ADHD to control RLS.

I was worried about the insomnia side effects but tried his recommendation. Despite improvements mentally it has had a disastrous effect on my sleep and in turn my RLS. It relieved RLS when I took some in desperation last night but it caused pains/restlessness in my arm apart from keeping me awake. I have had no sleep during this period and entering my fourth night on no sleep.

Questions:
- Should I be taking Ritalin for RLS?… I feel I shouldn’t.

- And if try to reduce the Ritalin what medications would help with the painful process?… opioids?

Charles K.
Australia

A Medical Reply

ADHD tends to be much more common in RLS patients. Some studies have found that over 25% of children with RLS also have ADHD (and vice versa). Ritalin does not worsen RLS and may help RLS by increasing wakefulness (RLS is more active with sleepiness). Ritalin otherwise is not a treatment for RLS but can be used to the ADHD that may occur with RLS.

If your RLS symptoms are not adequately controlled, then you should consider increasing your dose of Temgesic (which is a partial opioid).

A Reply from Charles

Sent: Sunday, May 8

I’ve stopped the Ritalin. 

The Temgesic saved me on the 4th night after terrible RLS came on… worse than usual. I couldn’t even sit down and had terrible aches in both legs (and heels), which couldn’t be relieved by stretching, along with jerking sensations. (I thought I’d be pacing all night with no sleep for a fourth night in a row).  

200mcg Temgesic took away the pain and also allowed me to sit down. I was able to lie back in bed comfortably where I took another 200mcg and slept 7 hours straight without waking which was wonderful…

Charles K.

Sent: Thursday, May 12, 2022 2:21 PM
Subject: Pramipexole withdrawal

I am a 66 year old woman who has had RLS for 22 years. Before I started withdrawing from Pramipexole I was taking .5mg Pramipexole and 900mg Gabapentin. I have had severe augmentation for many years.
I have been working with a physician for the past two months to taper off of Pramipexole. During the process I have experienced severe sleep deprivation while tapering off the drug. I now have only a quarter of a .25 pill left and am very fearful of the final taper because I am on day 16 of my last taper and am still experiencing severe day and night time RLS.

 My Doctor has given me Methadone while I am withdrawing and I am now up to 7.5 mg. Although helpful I am still am experiencing major sleep deprivation.

I was hoping that my RLS symptoms would improve before I finish my last taper. How long does it take before my RLS starts to improve? Will my last quarter of my .25 pill be as difficult with sleep deprivation?

Beverly K.

A Medical Reply

The problem is that every time that you decrease the pramipexole, your RLS will worsen. This will continue until about 2 weeks after COMPLETELY stopping the pramipexole. That is why I typically stop the pramipexole cold turkey (unless the patient has been on very high doses such as over 1.5 mg).

You will continue to experience increased RLS symptoms for 2 weeks after you stop the pramipexole but then the RLS will start to calm down and be easier to treat. I sometimes have to go up to 20 mg for the 2 weeks to control RLS symptoms. After the 2 weeks (or so), the dose can most often be very significantly decreased.

A Reply from Beverly

Sent: Thursday, June 2, 2022 6:50 AM
Subject: Nausea with Methadone

I am on 7.5 mg of metadol (methadone) while withdrawing from Pramipexole. After 5 extremely, difficult weeks of withdrawal I am finally experiencing a major reduction in restless leg symptoms. I am so relieved! I am taking Restoralax for constipation which has been very effective. The problem is that 5 days ago I started experiencing nausea and am losing weight from not wanting to eat (which is not good for me). I am super anxious because the methadone is working and I might have to increase the dose to withdraw from my last remaining dose (small). Could you please tell me what options I have?

Thank you so much for all your help. Your suggestions have helped me when I am discussing my refractory RLS with my doctor who is not knowledgeable with this treatment.

Beverly in Canada

A Medical Reply

First, I am very surprised that you were able get methadone for your RLS in Canada as I do not know of another Canadian patient who has managed to get methadone.

There are 2 solutions.

The first is to add Zofran which is a strong anti-nausea medication that does not worsen RLS and should prevent the nausea (which might get better with time).

The second is to change to oxycodone extended release. You may need 10-20 mg to get the same effect as the methadone. It is possible that the oxycodone may also cause nausea but you will not know until your try it.

Sent: Thursday, May 12, 2022 2:46 PM
Subject: RLS India


I had an IV IRON 2 years back which brought my ferritin to 300+ and I had considerable relief. I was able to get by 0.0625mg pramipexole most nights but did have to take 0.125mg every few days. This worked for 2 years but in the last few months, my RLS has become considerably worse. I no longer get relief with 0.125mg and my ferritin levels are 225, serum iron 84, tsat 36%.

I have tried over a dozen doctors in India and tried to present them with augmentation articles as well as Mayo Clinic guidelines but they either refuse to discuss or are just not willing to read the papers. All they want me to do is increase the dose of pramipexole which I'm very wary of. However, my sufferings have increased so much that despite knowing where it would lead me to, I am somewhat opening up to the idea of 0.25mg pramipexole. My question is what do you recommend I do? I have failed so many times in my attempts to have a discussion with doctors about augmentation that I have all but lost hope that I'll ever find right care in India. What do you suggest I do in such a scenario ? My doctor has suggested either increasing the dose of pramipexole or taking Pramipexole ER version.

Please suggest what should I do in a scenario where doctors do not listen or read the articles I share with them.

Heather M.

A Medical Reply

It is very hard to fight against ignorance and the lack of a physician wanting to learn the correct way to treat a disease like RLS. We have published many articles about augmentation and the latest (July 2021) Mayo Clinic guidelines discuss why dopamine agonist drugs are no longer the drugs of choice for treating RLS.

Going up on your dose will provide temporary relief but will cause your RLS to worsen over time. Part of the problem is that gabapentin (which is inexpensive and readily available in India) may not be sufficient to help you get off pramipexole. Typically an opioid is needed and I strongly suspect that Indian doctors will be very reluctant to treat your RLS with opioids.

This is a problem even here in the USA and there are very few doctors here that will prescribe opioids for RLS causing many RLS patients undue suffering. I wish I had a better answer for you but unless you can find a knowledgeable doctor who is brave enough to prescribe opioids for RLS, you will likely experience worsening RLS in the future as you increase the pramipexole.

You could try adding gabapentin or pregabalin to your current dose of pramipexole (instead of increasing the pramipexole) and see if that helps for a while.

Sent: Thursday, May 19, 2022 8:02 AM
Subject: Belbuca

My neurologist has agreed to prescribe Belbuca. I have been on 10 mg of oxycodone for several years taking 5 mg at 8 and another at midnight. It does cause a depressed mood and fatigue even though the half life is 4 hours. I was recently diagnosed with Afib which I'm concerned is a result of RLS treatment for years.

When reading more about Belbuca it seems to say that you should only take it if you have symptoms 24/7 which I do not. I usually only have symptoms starting in the evening. Occasionally I have afternoon issues.

Do you think it still makes sense to give it a try Belbuca even though the oxycodone is taking care of the RLS reasonably well? I just struggle with the side effects. If you think it is worth it to try, what dose would you suggest?

Mara

A Medical Reply

Belbuca lasts 12 hours so most RLS patients take it only once daily (about 2-4 hours before symptoms occur). When taken twice daily, it will cover 24 hour around the clock RLS.

It might be better for your depression as it tends to have fewer side effects but the only way to know is to try it.

It is hard to convert a dose of oxycodone to Belbuca but you would likely need between 150 mcg to 600 mcg.

Sent: Thursday, May 26, 2022 10:05 AM
Subject: Antibiotics and restless legs

I was wondering if you could help educate me on my restless legs. I had bariatric surgery April of 2021 and 2 days after I started to have symptoms of restless legs, they steadily got worse and I was diagnosed with restless leg syndrome, I quit my Amitriptyline and hydroxazine and of course my legs improved, but I was given gabapentin 300mg TID 9a,3p and 9p, to replace the Amitriptyline for my chronic pelvic pain syndrome (pudendal neuralgia/painful bladder syndrome).

I was doing good only having jittery legs once a week or none at all for a week or two, until I was given an antibiotic for a sinus infection that would not clear up, then my legs and ARMS went nuts!! the worst of it only lasted a few days but I have had symptoms on and off ever since, sometimes even in my trunk, arms and legs.. Why would an antibiotic make my restless legs worse? I did just recently have my labs done to see if my iron and ferritin were low and my fasting ferritin was 70 my TIBC was 380 UIBC 235 Iron 145 Iron Saturation 38 which are all up from January except my ferritin which is the same.

Could this mean that I need an Iron infusion, to get my ferritin up? Would that help me at all? My ENT wants me to take another round of antibiotics and I am very apprehensive due to how it effected me last time. He also wants me take some steroids. What if any help can you offer me?

Danielle M.

A Medical Reply

I have never heard of any of my RLS patients having a worsening of their RLS from taking an antibiotic (of course, anything is possible). It may have been coincidence or you have a very unusual reaction to antibiotics or more likely the particular antibiotic that you took. Since I am also a lung specialist, I treat many infections (including sinus infections) with antibiotics on my RLS patients and as noted above, have never heard of a worsening of RLS in those patients (or any other reports in the RLS medical literature).

The steroid treatment also does not affect RLS.

You might benefit from an iron infusion (we like the ferritin above 100) but you may have difficulty getting it covered by insurance (especially since you have a very reasonable iron saturation).

Sent: Tuesday, May 31, 2022 6:43 PM
Subject: Gabapentin

I have been prescribed gabapentin for my RLS, 1200mg. I split it up into 2 600mg doses because of absorption. Now the question. How long before bedtime do I take the last dose and then how long before that the other dose??  Is Horizant better??

Ken W.

A Medical Reply

Gabapentin takes 1.5-3 hours to be active (it clearly varies from person to person and some even feel it working in as early as 1 hour so only trial and error can determine this for you). Therefore, it should be taken approximately 1.5-3 hours before symptoms occur. That goes for both doses.

Sent: Monday, June 6, 2022 8:57 AM
Subject: Temgesic

I am 76 years old. Some years ago you helped me with your advice with regard to dopaminagonists (which I stopped). I have been taking Temgesic sublingual tablets 0,2 mg for one year and a half now. With very good success, I am able to sleep most nights. If not, I know this is because I have eaten some trigger food.

What disturbs me quite a lot is that – although the nights are mainly peaceful – I feel RLS in the afternoon. When I want to lie down after lunch for a quick nap, I am only able to stay quiet for 5-8 minutes – then RLS starts. I have to get up and get busy to feel better. In the evening around 8.30 pm it starts again – being very bothersome. I have to walk around until it is time to take the Temgesic. For your information: I take half of 0,2 mg around 9 pm and the other half around 10 pm.

have you any suggestion what I should take to have a rather peaceful RLS-free afternoon and evening? Both Gabapentin und Pregabalin made me very very dizzy.

Is there something I could do or take because Temgesic makes me so tired, even at this low dose (0,2 mg). In the afternoon especially, I walk around wanting to lie down – but this is not possible because I get RLS after some minutes (see above). Just now, sitting at my PC writing to you,
I almost fall asleep.

Another thought: when I was withdrawing from Pramipexole, I took 0,044 mg of this for quite some time – together with the Temgesic. Half of the Pramipexol 0,022 in the afternoon and half in the evening. I had the feeling that I was feeling better, perhaps not so tired. And the sleeping was also even better, I think the pramipexol enforced the Temgesic.
Could I try to take such a small amount of Pramipexol together with 0,2 mg Temgesic or is there another solution?

Christa T.
Austria

A Medical Reply

I typically would not advise you to go back on daily pramipexole as you would get augmentation/worsening of your RLS in the near future and then treatment would be even harder.

The Temgesic was your best bet as it typically causes fewer side effects than true opioids like oxycodone. However, it is possible that a drug like oxycodone (which is much shorter acting than Temgesic which lasts 12 hours). Of course, it may be more difficult to find a physician to prescribe oxycodone for your RLS.

You should also check iron and ferritin levels as iron replacement with intravenous iron can often be very beneficial for RLS symptoms.

A Reply from Christa

Sent: Friday, June 10, 2022 10:29 AM
Subject: AW: Temgesic

With regard to your second paragraph, "The Temgesic was your best bet as it typically causes fewer side effects than true opioids like oxycodone. However, it is possible that a drug like oxycodone (which is much shorter acting than Temgesic which lasts 12 hours). Of course, it may be more difficult to find a physician."

Do you mean that Oxycodone would make me perhaps less tired than Temgesic?

And what is your opinion about fighting the tiredness with a low dose of Ritalin (methylphenidate). Or would I be better off accepting this tiredness?

Christa T.

A Medical Reply

I usually do not like treating a side effect of one medication with another medication (especially like Ritalin which has significant side effects).

It is better to find a medication that works on its own. Oxycodone (and many other opioids) have much shorter actions so that they should be out of your body by the morning and therefore should not cause daytime issues. However, as I pointed out, most doctors do not like to prescribe regular opioids like oxycodone (and especially for RLS).

Sent: Sunday, June 12, 2022 1:36 PM
Subject: Re severe restless legs and body

I'm from Ireland. I have severe restless legs and periodic limb movement for about 2 yrs, on/ off before that for years. Recently it has increased to full body restlessness. From my arm pits down, even when I rest during the day.

I also have a few autoimmune diseases. Hypothyroidism since age 14, Primary biliary cholangitis (PBC) since Dec 2020 and autoimmune inflammatory arthritis since May 21.
Some of my symptoms are numbness and heaviness in my lower limbs and hands and feet on/off. Severe fatigue, joint pain and muscle weakness.

I'm on antidepressants for yrs, citralopam, then venlafaxine instead of citralopam Recently. I am struggling with mood since the recent diagnosis of PBC and arthritis.

I know antidepressant can contribute to RLS but I'm not sure how to get off them. I tried to stop citralopam last year but the anxiety was awful.
I saw 2 neurologists and they offered dopamine antagonists which I refused.

Noelle S.

A Medical Reply

You are correct that most all the antidepressant medications (except for bupropion) worsen RLS. However, when antidepressant medications are truly necessary (as it seems to be in your case), then we just treat around them.

Gabapentin or pregabalin would be the choice for treating your RLS. If these drugs are ineffective, then opioids are your next choice. I personally try to avoid treating my patients with dopamine drugs.

Sent: Tuesday, June 14, 2022 12:27 PM
Subject: Three questions, please

I have been a victim of this horrid disease since childhood. I augmented on Neupro 10 mg and it was 2 years of pure hell. As I tapered, I experienced Dopamine Agonist Withdrawal Syndrome and was initially suicidal I also had a Impulse Control Disorder while on the medication. I now have refractory RLS and I am currently taking 20 mg ( 5 mg. Each) of oxycodone. RLS symptoms for me usually start around 3 pm. My first question is concerning methadone. I had a brief discussion with my present neurologist about switching to methadone. Is methadone more effective than oxycodone? I would like to know your opinion as I feel this is the end of the line for treatment.

My second question concerns my 30 year old daughter. She has a very mild form of RLS. She has symptoms maybe a few times per month. She is getting married and is planning to have children. I have heard so many stories about RLS becoming extreme after childbirth. Does this happen? If so, is there something that can be done prior to or during pregnancy that will squelch the progression?

Finally, because this disease has affected the quality of my life so dramatically and my case is extremely severe, I would like to donate my brain ( of any other body parts needed) to RLS research. Can you tell me where or who I can contact to make those arrangements?

Mary B.

A Medical Reply

Methadone tends to be better for the majority of RLS patients (however, there are always exceptions). Methadone is more potent but even more importantly, it is a longer acting medication that gives much smoother control for RLS symptoms. I do not know your entire RLS treatment history, but under expert care, almost all RLS patients should achieve very good control of their RLS symptoms.

Pregnancy, especially the third trimester is well known to worsen RLS symptoms. Making sure that iron and ferritin levels are adequate (there is a consensus article on this topic that is available from the RLS Foundation) and there is also another article which goes over treatment for pregnant RLS patients. RLS may get worse with more pregnancies but this may be delayed by a few decades.

You should join the RLS Foundation (www.rls.org) and they have details on how to donate your brain.

A Reply from Mary

Sent: Wednesday, June 22, 2022 1:00 PM
Subject: Methadone WITH oxycodone

I now have methadone but I have not started taking it. My neurologist provided the following start directions:

1. Start with 2.5 mg. of methadone. I can take 2-3 5 mg of oxycodone.
2. After 5 days, increase to 5mg. I can take 1-2 5 mg. of Oxycodone
3. Get an EKG in 2 weeks.

I read the attached methadone leaflet and did some internet searching. I read that one should not take methadone and oxycodone together. Now I am apprehensive to start taking it. Is the schedule that my neurologist provided safe?

Mary B.

A Medical Reply

Although I sometimes will prescribe 2 different opioids such as methadone and oxycodone, I only do so if there is a very good reason. Such as, one of the drugs causing sleepiness (therefore it should be taken close to bedtime) and the other drug causes insomnia and should be taken earlier in the day to control RLS symptoms.

I never start with 3 opioids (unless there is a known history of side effects like stated above). It would be like buying 3 somewhat similar cars at the same time.

It is likely that your neurologist does not have much experience using opioids in general and in specific for RLS.

Sent: Monday, June 27, 2022 4:22 PM
Subject: RLS/RAS

I have gone through roprinole, augmented, pramipexole, augmented, gabapentin, quit working like it was supposed too. Saturday the Horizant came in the mail. Saturday night I took 2 600mg tablets at 5 with food. Everything ok until around midnight. Arm movements started and a little anxiety. Arm movements got worse. I didn’t get to bed/sleep until after 6 am. I slept until around 11. I didn’t feel bad and mistakenly thought maybe my body just needed to adapt to the new meds. So at 5 that evening with food, I once again took 2 600 mg of Horizant. A big mistake.

Started feeling a little anxious around 10. By midnight, once again things went really south in a worse way. My arms went totally bonkers. My dog thought I was trying to fly. At times I felt like I was on fire on the insides. Even without the arm symptoms I couldn’t be still. My insides were none stop. This went on all night. I watched the clock turn to 7. Today I am still feeling a small tingling in my arms. Drs nurse said going back to the gabapentin would be ok until they figured something out.

I am at wits end. I would like to once again know what sleeping all night is like. To once again feel good. HELP!! PLEASE!!

Ken W.

A Medical Reply

Once patients have augmented on dopamine agonist drugs, gabapentin class drugs do not seem to work as well. Some patients can do well with gabapentin in your situation but that is less common.

My suggestion would be to consider opioid treatment as that typically works well in this situation and most patient should achieve excellent relief from their RLS symptoms.

Sent: Friday, July 22, 2022 1:08 AM
Subject: Restless leg from Vancomycin 15 year old son

My son is currently in the hospital being treated for a terrible finger infection. He had surgery last night and was immediately started on Vancomycin in the Emergency room. Within a few minutes of taking the IV medicine, he developed Red Mans Syndrome and I noticed a lot of leg twitching. On day 2 of them continuing the medication through IV, they slowed down the dose but my 15 year old son is going crazy with Restless Legs and we don’t know what to do to help him. He does have a history of RLS but this is worse then normal.

I told the nurses and they don’t think its from the medication, but I do. I was trying to request something for it and all they told him to do, is take a walk in the hallway. I feel that they should give him something for anxiety, I use Klonopin as needed for the same problem and it helps pretty quickly. I’m so worried about them continuing the medicine and making it worse, any suggestions? He is also a Type 1 Diabetic and we did make sure he was hydrated. Help!!!
,
Valerie M.

A Medical Reply

His RLS may benefit from gabapentin. Vancomycin should not be a problem.

Sent: Saturday, July 23, 2022 4:07 AM
Subject: RLS Symptoms worsening

My longstanding( 32 years) RLS symptoms have quite suddenly become worse over the last few weeks. They are starting much earlier in the day, around mid afternoon and this is seriously impinging on my quality of life.I'm wondering if this is due to any of the new medications I'm taking- namely, Omeprazole, Cimetidine or Baclofen. Or if it is the degeneration of the disease with age. I am 66.

I have taken 6 1/2 ml of Morphine(10ml/ 5ml) successfully at night for a year. Your thoughts would be much appreciated.

Anne B.

A Medical Reply

This is difficult to answer as many factors might be involved.

When RLS suddenly worsens there are usually several causes.

Low iron/ferritin levels which should be rechecked.

Other new medical issues (too many too mention).

New medications including over the counter that may worsen RLS.

Increased stress/anxiety.

Poor sleep.

Without going over a patient thoroughly, it is difficult to give advice. Sometimes RLS worsens for no good reason and the medication (morphine in your case) might need to be increased.

Sent: Tuesday, August 2, 2022 4:08 AM
Subject: Buprenorphine and tooth loss.

I am now a trustee of the UK RLS charity and a regular contributor to our online help forum on Health Unlocked.

Recently, one of our members has reported severe tooth loss after being on buprenorphine skin patches for several years. The FDA also has issued a warning about tooth loss, suggesting that the acidity of sub lingual tablets has caused the problems. However, the member reporting the tooth loss has been on skin patches.

I have noticed the side effect of very dry mouth since starting sub lingual buprenorphine and believe that reduced saliva is causing the tooth loss.
Have any of your patients reported tooth loss or damage on Buprenorphine?

Julie G.,
London, UK

A Medical Reply

I have not noted these problems so far in any of my patients and I have been using buprenorphine products on the cheek and sublingually for the past 5 years or more. However of course that does not mean that this is not a real issue especially sublingual or buccal is formulations. I suspect it would be much less common in the usual with the transdermal patch.

Update: I have had a few patients complaining of dental issues with buprenorphine but only with the oral products.

Sent: Wednesday, August 31, 2022 3:57 PM
Subject: OPIATES RLS

I messaged you last summer concerning rls symptoms.

I had another question, my sleep Specialist knows what he is dong and ha been prescribing me Buprenorphine and methadone. Buprenorphine even at 8 mg which is a very high dose didn’t do much and Methadone 20 mg didn’t do much for the RLS.

Have you seen rare cases where opiates don’t even help extreme RLS?

Robert C.

A Medical Reply

There are very few patients who do not respond quite dramatically to various opioids. It is probably only a few percent of people do not benefit from opioids. The bigger problem is side effects from the opioids that limit their use.

Sent: Thursday, September 22, 2022 11:03 AM
Subject: RLS - augmentation from Pramipexole

I recently joined an RLS forum and several patient advocates and moderators suggested I contact you asap, as I believe I'm suffering from severe Pramipexole augmentation. I recently relocated to Jupiter south east FL and have been unalbe to find a specialist doctor to help me. Here is a brief synopsis re: my RLS:

First RLS symptoms started during my last trimester of pregnancy in 1991. Throughout my pregnancy I suffered from anemia.

RLS symptoms continued and about 10 years ago I had to be prescribed 1 x 0.125mg daily to be taken in the evening. This dosage could be increased until I was happy with with efficacy. Gradually over the years I have increased my dosage to between 4 - 6 x 0.125mg daily. Two years ago I went to see a neurologist for the RLS who suggested I see a hematologist. The Hematologist advised I needed to have an iv serous ferritin infusion as my serous ferritin level was 16. Post infusion, my ferritin level was 200, however it didn't relieve my RLS symptoms.

The past couple of years I believe my symptoms have become significantly worse:

I sleep no more than a few hours with quality if sleep very poor

I can't sit down for any longer than a few minutes at a time

I'm no longer able to sleep in the same room as my husband

I don't socialize etc.

I believe it is spreading to my face and arms.

I am exhausted and had to give up my job as a Perioperative RN.

My mental health has been adversely affected.

I desperately need to come off my Pramipexole - could you please suggest someone who can help me? My insurance coverage is through Cigna.

Any advice much appreciated.

Evie C.

A Medical Reply

Your problem is very typical for the many RLS patient who are suffering from dopaminergic augmentation. The treatment is fairly easy for those of us who are experts in RLS and treating augmentation. There is an excellent chance that with proper care, you should total resolution of your RLS symptoms. The issue is that it requires opioid therapy (for the majority) and expertise and willing to use the opioids to manage the augmentation.

I do not know of any RLS doctors in Florida.

You should check the RLS Foundation website (www.rls.org) for the 12 RLS quality centers and see if one is close to you and will take you on as a patient.

Again, with proper therapy, you can put all this suffering behind.

A Reply from Evie

Sent: Wednesday, September 28, 2022 5:27 AM
Subject: Re: RLS - augmentation from Pramipexole

I'm still trying to find a doctor who will consider prescribing opioids for me when I come off my Pramipexole (due to Augmentation).

I've been reducing my Pramipexole this past few weeks. I'm now on 2 x 0.125mg daily, but I'm struggling. I have two questions, which i hope you can help me with, please: Should I be taking any other meds to help me with this reduction from Pramipexole? In YOUR experience, do many people who've had Dopamine Agonists Pramipexole Augmentation successfully transfer to Gabapentin or is usually only successful with opiods.

Any suggestions greatly appreciated as this is literally destroying my life. Ive slept a total if about 12 hours in the past week.

Evie

A Medical Reply

A small percentage of patients may be able to transition from dopamine agonists to gabapentin or Lyrica. However, those are mostly patients on very low doses of the dopamine agonist to begin with. We know that once you have been on dopamine agonists and especially had augmentation, the gabapentin type drugs do not seem to work as well.

In your case, where you were on a moderate to high dose of dopamine agonists, it is less likely that you will do well enough with gabapentin or Lyrica as a complete transition from dopamine agonist. Adding them may help you lower the Mirapex dose somewhat however.

The other issue is that typically, high doses of gabapentin or Lyrica are needed and side effects usually prevent achieving a high enough dose to get good enough restless leg relief.

Opioids work the best for over 95% of patients.

Sent: Sunday, October 2, 2022 11:53 PM
Subject: OSA, CPAP and RLS

I’ve had RLS since childhood and have been able to cope with it up until my mid 40s. I’ve been treated with an assortment of Dopamine Agonists and after augmenting on them, I was switched to a combination of gabapentin and Tramadol.
Recently, after moving, my new doctor has cut my doses (much to my discomfort) and wants me to take a detailed sleep study after a take home sleep study revealed moderately severe obstructive sleep apnea. He believes that treating the OSA will provide relief from my RLS.

It seems to me that up to now the only way to treat RLS has been pharmacologically. However, I’m intrigued by this approach and was wondering whether any new research studies have been done tying RLS to OSA.

Nicholas A.

.A Medical Reply

This is actually very simple and well known. RLS is more active when patients are drowsy and sleepy. Moderate to severe sleep apnea makes patients sleepy during the day so they will likely experience more RLS symptoms.

Treating sleep apnea will help but likely you will still need your gabapentin and tramadol. You might get by with a little lower dose if you are lucky but overall, your treatment should not change drastically.

Sent: Thursday, November 3, 2022 11:44 AM
Subject: RLS Advice please

I live in Cornwall, England and have had RLS for about 35 years. At first I was told to drink tonic water at night! When I eventually got to see a neurologist, he prescribed 500mcg Clonazepam at night. That worked brilliantly. The dose was increased to 1 mg after a couple of years. Gradually the dose was increased to 5mg to keep my legs under control.

Twice my GP asked me to change to Pramipexole. The first time I had palpitations and was referred to a cardiologist. Pramipexole was discontinued. The next time I was told that clonazepam caused falls in the elderly and my new GP said he would introduce Pramipexole very gradually.

During that time, I had a heart attack. My angiogram was clear but the MRI showed damage to the walls of my heart. The cardiologist in Exeter called a multidisciplinary team meeting and they decided that the MI was caused by Pramipexole. I was put back onto clonazepam, this time 6 mg.

Then I saw another neurologist who asked me to try Pregabalin. That made me unwell and affected my heart. Then I was prescribed Gabapentin but that gave me crippling headaches. He didn’t think that another Parkinson’s medication would be a good idea.

The next neurologist I saw at the Brain Centre in Bristol asked me to try Gabapentin again but checked my ferritin levels and prescribed ferrous sulphate. The Gabapentin again caused terrible headaches but my legs calmed down for a couple of years on a combination of 3 mg clonazepam, codeine and ferrous sulphate.

Recently my legs became unbearable with uncontrollable jerking from about 8pm through the night. I tried warm baths with Epsom salts, a weighted blanket and a brisk walk every day. I also do stretches in the evening and in the night when I get woken up by RLS.

Last week I went back to the Brain Centre and the neurologist prescribed Sinemet (carbidopa and levadopa). He also said that he would arrange iron infusions if they don’t work. We discussed the problems I had with Parkinson’s drugs, but he felt it was worth trying. My ferritin level is 249 and I take 3 x 200 mg ferrous sulphate before meals each day.

I have read that Sinemet is a dopamine agonist and dread augmentation. Do you think this is a good idea? I have been taking one tablet at night for nearly 2 weeks, as well as 3 mg clonazepam, 60 mg codeine and 10 mg amitriptyline( to help me sleep). The neurologist worked out a decreasing dose of clonazepam every 2weeks over 3 months. So far my legs have been much better and I have had some good sleep.

Other prescription meds I take are: 40 mg simvastatin, 100 mcg levothyroxine, 75mg clopidogrel, 30 mg lansoprazole.

I would really appreciate your advice.

Ruth G.

A Medical Reply

Unfortunately, your treatment for your RLS is much less than satisfactory. I strongly recommend not going on Sinemet on a daily basis as it will cause augmentation very quickly and we have known about this problem only since 1996 when the first medical article was published on augmentation from Sinemet. You can take Sinemet up to 3 days a week without concerns of augmentation.

The clonazepam does not treat RLS symptoms but merely puts people to sleep. However, tolerance occurs with this drug and most people use it daily especially for years as you have and as you can tell since she was started on half a milligram and now need much more to get an effect that this is a very poor choice of therapy.

The amitriptyline that you are taking is one of the drugs that makes restless legs worse. You can get a copy of our RLS medical alert card on her website at www.rlshelp.org and you will see that amitriptyline is listed as one of the drugs not to use.

An iron infusion may be helpful but only a few intravenous iron preparations are helpful. I have attached our latest guideline paper that may help guide you and your physicians.

At this point, the best treatment would be an opioid. Generally these are very hard to get in the UK but I have had several restless leg patients tell me that they can get Temgesic which is a partial opioid and much safer than the regular opioids. This medication may be able to take care of your restless legs completely without needing any other additional medications to treat your restless legs and likely help get you off the clonazepam which typically requires a very long weaning process to get off.

The codeine I am sure is helpful but it is a very weak opioid and the Temgesic is a much better choice.

Sent: Friday, November 4, 2022 6:12 PM
Subject: LDN and methadone for RLS?

Do you think that combining methadone with low dose naltrexone (or ultra-low dose) would help, perhaps allowing one to reduce the methadone dose for same RLS efficacy? Or would the LDN actually interfere with the methadone and make RLS symptoms worse?

I'm currently taking 15 mg methadone and 1200 mg gabapentin each evening, and am getting very good control of my RLS symptoms.

Peter W.

A Medical Reply

Despite many restless leg patients claiming they get benefit from LDN, most likely any benefit is due to the placebo effect. Since his blocks opioid receptors, it could only have a negative effect. However, the dose is so small that it probably has little or no negative effect and almost assuredly no positive effect. Taking it with your methadone would only reduce the methadone effectiveness a little bit and thus might make your RLS symptoms a little worse.

Sent: Monday, November 14, 2022 1:22 AM
Subject: Switching drugs on a regular plan

I have been reading your letters to patients on the Southern California Restless Legs Support Group site with great interest.

You have more than once suggested, to patients who have difficulties with all classes of drugs specific to RLS, that a washout of the current problematic drug followed by a regular switch from one drug to another and back again, for a few weeks at a time, could harness the good effects of any given drug class and avoid the harms.

I had augmentation problems with DAs after a few months, I had problems with methadone after a few weeks, and am now struggling greatly with buprenorphine. (I take 2mg Subutex per day, which I know is far above what you recommend.)

I would like to come off buprenorphine pro tem, and go on to a program where I switch from pramipexole (for no more than one month) to buprenorphine (but at a much lower dose, also for a few weeks) or methadone.
I have never given pregabalin a real trial, as I get dozy and confused above 75mg, but I am willing to try again. Perhaps pregabalin in a small dose piggy-backed on a small dose of another drug might work.

Is this a good plan in principle? And if so, how does one come off 2mg buprenorphine? Can it be done Cold Turkey? Or, if one must step down slowly, by what per cent should it be done?

I believe that a clear exposition of this sort of therapeutic plan would be helpful to many of us who seem sensitive to all drugs, of whatever sort.

Bronwen H.

A Medical Reply

Since there no concern about tolerance/dependence on the methadone or Subutex at the doses commonly used to treat RLS, stopping them cold turkey is not an issue except to control the RLS. If you switch to a dose of pramipexole that is adequate to control your RLS, then the transition should not be a problem. The length of time on each drug is determined by side effects or especially with pramipexole, the emergence of augmentation. This can vary from days to months.

Although we typically like to use buprenorphine at .5 mg (1/4 of a Suboxone film), some patients do need up to 2 mg.

The addition of pregabalin can be considered but only when the drugs being used are not fully effective at their tolerated doses. Otherwise, adding pregabalin just makes it more complicated and will likely result in side effects which has already occurred for you with the low dose of 75 mg.

Sent: Sunday, November 27, 2022 6:28 PM
Subject: Request for help with Refractory RLS, Sydney Australia

Is it possible to receive some advice re advanced RLS at this email address?.

I am 65 years of age & had RLS since 17.

I have worked through every recommended medication for RLS & unfortunately was prescribed up to 5 x 1mg of Pramipexole at 7.30p.m.
at night by a Neurologist.

I am currently on a mix of Norspan patch (weekly), Targin at night, Pramipexole 2 x .25mg at night & 2 x 300mg Gabapentin at night.
I am experiencing RLS during daytime & early afternoon`s now.

I suspect the earlier onset of symptoms is augmentation as I decrease Pramipexole- but I would like to improve the progression of
RLS rather than have RLS get worse & worse.

I am happy to provide accurate information, if this email address is correct.

I can`t express how grateful I would be, if it were possible to receive assistance.

Yours Sincerely,
Jim W. (Sydney, Australia).

A Medical Reply

The major issue is that your initial treatment was clearly suboptimal. The maximum recommended daily dose of pramipexole is 0.5 mg daily and you were clearly on 10 times that maximum dose. The augmentation that this set up may now make it much more difficult to treat you. When treating patients who have undergone dopaminergic augmentation, it is best to completely eliminate the pramipexole otherwise they worsen RLS will persist and make treatment more difficult.

Another issue with your therapy is that the buprenorphine in the Norspan patch will bind so strongly to the opioid receptors that the oxycodone and the Targin will be much less if at all effective. Typically, you use either the buprenorphine or oxycodone separately but not together.

With proper treatment including getting off of the pramipexole completely you should be able to get fairly good control of your restless legs. It does require some expertise in the physician treating it and there are many articles now available on treating augmentation that you can get through the restless leg foundation.

Sent: Monday, November 22, 2021 3:54 AM
Subject: Restless Legs Syndrome - advice needed

I am 69 years old, male, otherwise in good health and live in Scotland. I have suffered from RLS for many years now and have been through various medications and am classed as Severe. I was initially put on Ropinirole by my consultant and this was ramped up to 4mg over a couple of years. At this point I was experiencing augmentation although I did not know about it at the time. The consultant put me on Pregabalin to cope with the feelings that I had in my arms (which meant I was unable to type at a keyboard – disaster as a software developer) and this was upped to 3x 100mg. I finally decided to try and get rid of the Ropinirole once I was retired and this took a year, a very difficult year. I was then put on Pramipexole which I tried to keep to a minimum until I heard of Buprenorphine (Temgesic) from the Health Unlocked folk. So a year ago I started on 2ugm and the effect was immediate – I slept right through the night and my wife declared that I was a new man. However, after several months I then started to wake up again due to the jerking of my body (generally from my midriff) and so I reluctantly upped the dose to 1.5 tablets and then 2 tablets (4ugm).

A couple of months ago I tried to reduce the Temgesic and take Pramipexole again with the thought that cleansing my body of the Temgesic would hopefully reboot its effects. However I discovered that the Pramipexole did not have the effect that it once did and so after three weeks I reverted to the Temgesic again. Having done so I also found that I had to go back to the 2 tablets per night once again as the reboot did not seem to have worked.

I also suffer from a lot of itching with the 4ugm and this is stopping me getting to sleep. I have tried Desloratadine 5mg but I am still itchy.

All the while I am still taking the 300mg Pregabalin. I did try to reduce this in 25mg steps, but any reduction simply made the jerking appear earlier.

What I have realized is that the RLS symptoms are now less and that I am experiencing the related PLMD. My sleep regime is typically asleep for 1-2 hours, up for an hour, back to bed for an hour or so, and so on. I have a FitBit and it tells me that my average sleep is 4 hours per night. This is not enough and I am constantly tired, nodding off after a meal, etc.

For this last week I have started to take 2.5 tablets but my GP has said that I should be taking 1-2 tablets, “as required”. So I would appreciate any advice that you may have as I do not see what else I can do to help me overcome the PLMD and hence get the sleep that I need.

Ian L.

A Medical Reply

It is hard to give you specific advice without seeing you as a patient.

However, a few general comments.

It is never a good idea to go back on a dopamine drug (like pramipexole) once you have experienced augmentation. Rarely does anything except some short relief come from that plan.

You should have fasting levels of iron and ferritin levels done in the near future as if they are low (according to RLS standards, not usual lab standards), aggressive iron replacement can be helpful.

The dose you have mentioned for Temgesic is questionable since it comes in 200 mcg pills.

 Sent: Sunday, February 5, 2023 9:50 AM
 Subject: Anything promising on horizon?
 
 Since taking Belbuca buccal for RLS (c. 100-150 mcg—I cut in half to reduce dosage to lowest possible), I have developed apnea, which is causing almost as much sleep loss as RLS, due to the CPAP machine and all the paraphernalia that goes with it. I have accumulated seven different masks here at home, trying to find one that enables me to sleep with the machine running. The nasal masks (nose only) inevitably result in severe dry mouth as the air is pushed into my nose and down my throat and into and out of my mouth. Many times I have been unable to swallow. A full-face mask alleviates the dry mouth but I haven’t been able to find one that fits my small face, so I end up awakened by noisy air leaks. I am writing in significant distress this morning due to lack of sleep.
 
 My question: If I could get off the opioid for RLS, I believe the apnea would go away (at least, I hope it’s not a permanent condition now). So I want to concentrate on the cause, rather than symptom alleviation. Has anything new surfaced in the understanding of RLS? I’ve tried the iron infusion, but it didn’t do a thing. I went onto Belbuca because I’d tried everything else that was on the market at the time (three years ago), which is why I'm asking if there’s been any kind of breakthrough in understanding.
 
 Has a regimen of stretching the Achilles and hamstring tendons hourly ever helped anyone rewire the brain so that it no longer keeps the legs active at night?
 
 Jean H.

A Medical Reply

There is not that much new currently that might help you get off the Belbuca except perhaps for a good response to an iron infusion. About 60% of patients have a good response to infused iron but most of those patients may only be able to reduce their medications, not completely stop them.
 
 It is much less likely for Belbuca to cause sleep apnea and especially obstructive sleep apnea as it does not affect breathing like regular opioids. I would suspect that you would have developed sleep apnea even if you were not on Belbuca.
 
 Stretching exercises do help some patients but typically only for minutes to an hour or so.

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 123.
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