Getting off pramipexole etc.

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ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Sun May 22, 2016 6:26 am

I found that I only needed 100 mg of gabapentin to counteract the insomnia of the opioids. But, it made me VERY tired the next day. I never was able to use it alone - I was up to 900 mg 3 times a day and it didn't do enough.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: Getting off pramipexole etc.

Postby stjohnh » Sun May 22, 2016 2:33 pm

I also found that Gabapentin help with sleep alone not with jumpy legs. Gabapentin at 150 milligrams at bedtime helped my sleep although I was extremely tired the next day, pretty much non-functional.

A solution could be daily opiate with a small daily dose of pramipexole.
Blessings,
Holland

badnights
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Re: Getting off pramipexole etc.

Postby badnights » Mon May 23, 2016 12:10 am

There are numerous other opioids. The first one that springs to mind is hydromorphone - the long release form, hydromorph contin, is what I take. There is also levorphanol, oxymorphone, fenantyl, and medium-potency ones including hydrocodone and tramadol, and weird ones like pentazocine and meperidine. If one does not work, try another, if your doctor is willing.

You're taking 40 mg daily now? The 40 mg twice a day was only for three days? I am more worried about your dose, from what you said "I stopped having problems with my legs during the daytime. And the 40mg of oxycontin now feels like an overdose." A needlessly high dose can cause problems. First, it's rough on your body to continually process more than it has to, second, long-term opioid use has been linked to reduction in gonadal and adrenergic hormone levels (not sure if it's dose dependent but I wouldn't be surprised), third, dependence at a higher dose is more likely and harder to deal with than at a lower dose (not talking addiction, talking dependence) - eg withdrawals when the medication wears off before your next dose every day.

I have been in the situation, when my daily dose was higher than now, of having to take some in the morning merely to prevent withdrawal symptoms in the afternoon. Not to stop WED/RLS symptoms, but to prevent physical withdrawal symptoms, which can be very much like RLS/WED, so it can be hard to tell. There is more nausea and cold-sweat stuff with opioid withdrawal, but that can happen, to a degree, with WED too (I call that Sick WED). Is it possible that any of the effects you're experiencing are withdrawals, from going longer than 8-10 hr without a dose?

I would suggest that if possible, you switch to another opioid, preferably in combination with gabapentin so the dose can stay lower. Meantime, see if you can reduce the oxycontin judiciously, and add in the gabapentin. I don't know how much gabapentin you have, but you can take more than 300 if you're not having side effects and if your doctor said it was OK (up to 3 doses of up to 900 mg in a day, according to the Clinical Management of RLS book). (I find pregabalin slightly more effective than gabapentin and without the side effect of mood swings, but it's more expensive)

By the way, an important point is to not aim for total relief. For some reason, total relief seems to push us to medication tolerance, renewed symptoms, and dose increases.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

veldon75
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Re: Getting off pramipexole etc.

Postby veldon75 » Fri Jun 03, 2016 12:01 pm

I have been on Mirapex for aprox. 10 yrs I have been Augmenting for a while I've tried to stop Mirapex a couple times with no success. I really want to, and now WED is spreading to arms and starting in the AM. I have been getting Oxycodone 10 from a pain Dr., for Fibromyalgia, neck surgery, recent elbow tendon surg, but I think he's trying to stop seeing me, if I have to see someone else or he wants to wean me off oxycodone, would Hydrocodone work to get off Mirapex? I've seen several Neurologist and they are all worthless in SC, they won't prescribe opioids. :oops:

Rustsmith
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Re: Getting off pramipexole etc.

Postby Rustsmith » Fri Jun 03, 2016 12:45 pm

Any of the strong opiates can help cover the problems associated with getting off of Mirapex. Each of them can have different side effects, so the issue is generally finding the medication that works best for you. Unfortunately, selecting the right opiate is one of those areas where the our differences make something that works for one person completely unacceptable for the next. If you would like to know more, check out the video on opiates by Dr. Earley of Johns Hopkins near the middle of the web page at http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/treatment.html
As for finding a doctor that can help you, you might want to try contacting one of the Foundation's Quality Care Centers. There is one in Atlanta and another in Nashville. Although it involves a bit of travel, many of us have found that it is worth the effort when none of the local doctors is willing and/or able to help. You can find information about the Quality Care Centers at http://www.rls.org/qcc-directory.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Wed Jun 29, 2016 12:37 pm

Hi. Unfortunately, the selection of opiates available in Thailand is quite limited. When I was prescribed oxycontin to help me wean off the dopamine agonists, and possibly continue using as monotherapy or part of combination therapy, the hospital had only a 40mg dose. Since I needed to take two doses a day, that means I was taking 80mg of oxycontin a day. It was too much. I had a variety of side effects: dizziness, difficulty concentrating, nausea, insomnia, fatigue, and a feeling of general unease that is hard to describe but it felt like a heavy object at the bottom of my stomach. It wasn't easy to sort out which side effects were from the withdrawal and which were from the oxycontin. I knew I had to reduce the amount of oxycontin. The hospital finally got a supply of 10mg pills. I am now down to 40mg a day: 30mg at 8 pm and 10mg at Noon. I am not sure why I need a dose during the day; my legs don't bother me much during the day unless I try to nap. In any event, I felt not bad on this regimen for about a week. The dizziness went away, as did the nausea and the difficulty concentrating and general feeling of unease. But after that one week when I felt pretty good, I starting to feel severe fatigue and I was (am) yawning all of the time. The only thing I can think of that might explain those symptoms is that I am still experiencing some withdrawal from the dopamine agonists. I have been off them for about two months. But I had been on them more than 20 years. Is it possible that a person would experience some withdrawal, perhaps on and off, for months or even a year or more? I see the doctor Friday and I don't know what we ought to do.
David

ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Wed Jun 29, 2016 10:00 pm

Sometimes it seems the more I know, the less I know...hoping you and your doctor can figure it out.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Thu Aug 04, 2016 10:27 am

I have a question. I seem to recall reading that some people who were on high doses of a dopamine agonist, say pramipexole, and were able to wean themselves off of the drug –– that some of these people eventually went back to pramipexole at the 0.25mg dose (no higher) as one drug in a combination regimen. Has anyone heard of this happening? My legs are relatively stable at the moment, on my regimen of 40mg a day of oxycontin, but I don't feel well on this regimen. I may not feel any better adding prampiexole to my regimen and reducing the dose of oxycontin, but who knows? As Ann says, "the more I know, the less I know."
David

Rustsmith
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Re: Getting off pramipexole etc.

Postby Rustsmith » Thu Aug 04, 2016 11:30 am

I fall into the bounds of what you described. I augmented on pramipexole after a year with an eventual dose of 0.5mg. My doctor switched me to Neupro and I augmented on that after another 15 months with a max dose of 4mg. Because I was moving away and he didn't want to switch me to an opiate just before I left, my doctor put me back on pramipexole. I was usually using 0.75mg, but a couple of times I hit his max of 1mg. Once I was able to get with a new RLS specialist, my treatment was redesigned to include methadone, 900 mg gabapentin and 0.25mg pramipexole. The methadone handles my urge to move issues, the gabapentin allow me to fall asleep and she still has me on pramipexole as treatment for my PLMS. We have talked about eventually dropping the pramipexole, but I think that her plan is to schedule a sleep study and have me stop the pramipexole just before the study so that she can get a measure of my PLMS without the pramipexole. She is still quite concerned about my hours of sleep and quality, so that is why she doesn't want me to stop just yet.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: Getting off pramipexole etc.

Postby stjohnh » Thu Aug 04, 2016 2:04 pm

I was on 0.375 milligrams of pramipexole when I augmented. I stopped it for a while, took a few other medications for a while, but am now back on at 0.125 milligrams daily. It now does a wonderful job of controlling my jumping legs, as long as I use it with other medications (kratom). I also use edible medical marijuana and very low dose gabapentin to help with sleep.
Blessings,
Holland

ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Thu Aug 04, 2016 9:23 pm

I was on only .125 mg when I augmented. The doc kept increasing it until I was at .75. I backed it down to about .375 on my own, then got off using an opioid.

For a long time, I used .125 with 5-7.5 mg methadone. But, I stopped methadone to break dependence and don't want to use it during the week now and only use methadone on the weekend. I was surprised to find that l need about .3125 when I took out the small amount of methadone. OK, it's not small to some, but I need 30 mg of methadone throughout the day to have no breakthrough, so the way they work together really reduces the amount of methadone I need.

So, I keep it at .25 by adding other things - kratom, gabapentin, an opioid, etc. I've recently stopped gabapentin because of another round of depression, so it's a bit harder to keep it at .25 without an opioid.

My guess is that you could use it in combination with 5-10 mg of oxy and keep it between .125 and .25. But, just a guess, David.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
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Re: Getting off pramipexole etc.

Postby legsbestill » Tue Aug 30, 2016 8:42 pm

I am reading of the travails of David in Thailand with great interest as they are very similar to what I am going through. My sleep specialist prescribed mirapexin over 10 years ago and then effectively discharged me to my local doctor who renewed my prescription as requred. Dosage gradually increased due to what I now realised was augmentation so that I was taking about 1.5mg daily when I went back to sleep consultant in April. She recommended a 'drug holiday' in which I come off mirapexin and then consider commencing a neupro patch later in the year. She prescribed Lyrica (pregabalin) to deal with the effects of withdrawing from pramipexole and recommended I take an iron supplement. She never mentioned opioids. I had done NO research on rls over the years (even though I generally cannot book a hotel room or buy a small kitchen appliance without spending hours looking at options, reviews etc).

Coming off mirapexin was horrendous and I would say it took much longer than 10 days to normalise - I am not sure if I am normal even now after nearly 4 months. Pregabalin was as David to Goliath except without the killer slingshot at the end. It made absolutely no impact on my symptoms and made me feel miserable so I eventually stopped taking it. Emailed my sleep consultant who took over three weeks to respond and had nothing useful to suggest. In the meantime I had discovered this site and also the Johns Hopkins Medicine and RLShelp.org. Armed with a greater understanding of my condition, I emailed my sleep consultant again asking whether she would consider opioids as I am VERY reluctant to resume any DA for fear of the dread augmentation and after the torture of withdrawing. After another long delay she responded saying she would not prescribe opioids as they would make me 'muzzy' and she thought I should try the neupro in September; she completely failed to address my questions about the risk of augmentation. I will refrain from commenting on the juxtaposition between a worry about 'muzziness' set against the torture which any poor soul who has recourse to this website will know attends upon night after unrelenting night of violent symptoms which make it impossible even to lie in bed let alone sleep.

My sympathetic but self-confessed ignorant General Medical Practitioner was much more helpful and consented to prescribe 5mg oxycontin 12 hour slow release tablets. I am currently taking three of these in the evening. The results are variable; they always slightly blunt the awfulness of the symptoms but some nights not enough to allow sleep. On other nights I will get three or four hours of sleep and then maybe another one or two after about half an hour of being out of bed doing a yoga routine. This is bliss compared to pre-oxycontin days and on one glorious occassion two weeks ago I slept for 8 hours.

Now I am wondering if this is the best I can expect or could I dare to look for more regular nights of 8 hours if I experiment further. I think I have the following options:

(1) Take a larger dose of oxycontin - I see that others are taking much higher doses. Although I had bad daytime symptoms in the early days of withdrawing from pramipexole, they are now very tolerable and I don't need day time medication. But if I took more in the evening would I get a longer period of sleep?

(2) See if I can change to methadone - my G.P. cannot prescribe this but he might be able to refer me to a pain consultant who can - maybe it would be more long lasting in effect?

(3) Try taking mirapexin intermittently with the oxycontin - mirapexin worked fabulously in combatting the WED symptoms BUT I augmented and also I now think that I experienced some compulsive behaviour (internet shopping) and was generally very tired when on it but maybe that was because the dose had got relatively high towards the end. Could I see if a lower dose would work now and only take a couple of days at a time to overcome risk of augmentation?

(4) Try the neupro patch - I am VERY reluctant to return to a mono-treatment of a DA - can the patch be used intermittently? Am I likely to experience the same side effects as on mirapexin?

(5) Would it be worth reintroducing Lyrica? Maybe it would have some effect now that the symptoms have settled down somewhat - have to say that I didn't really like Lyrica and I gained weight and felt quite gloomy while on it.

(6) My iron levels (?serum ferritin?) were low-ish 36 now up to 44 after months of taking oral iron. Would it be worth getting an iron injection?

Sorry for long post. I am in Dublin, Ireland and it is difficult to access knowledgeable medical care. My doctor (G.P. - not Sleep Consultant) is almost too accommodating so that I feel like I am self-medicating with fairly high octane drugs which is daunting. I have no confidence in my sleep consultant and have tried to find a neurologist but have been referred from one to another as they are not familiar with the condition (at least they are honest enough to admit it I suppose). I am wondering if it would be worth making the journey to Baltimore to see Dr. Early (am not even sure if it would be possible to get an appointment with him). Although things have improved since I got oxycontin, I am still in relative torment and feel as though I am a spectator in my own life without having the capacity to live it with so little sleep. I would be so grateful for any feedback.

Rustsmith
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Re: Getting off pramipexole etc.

Postby Rustsmith » Wed Aug 31, 2016 1:17 am

legsbestill, lots of good questions. Some may need further clarification tomorrow by Polar Bear (another moderator), she is located in Northern Ireland, and although different medical systems, at least hers is closer to what you have than those of us in the US.

If you haven't already seen it, please take a look at the webinar that Dr Earley gave on opiates. It will help answer a number of questions, some of which you didn't know that you had. https://www.youtube.com/watch?v=iCNI_UCj7SI

1. Each of us responds to the opiates in a different manner. It is possible that a higher dose would help, but it is also possible that you will experience what some refer to as "Alerting", where the opiate increases the difficulty in falling asleep. The only way for you to know is to try it and find out.

2. There are two "advantages" to methadone. The first is that it has a longer half life than the other opiates, so it does not wear off as quickly. It also has a bit of a dopamine agonist effect that the others do not, but that isn't sufficient reason to say that it is better, just different (which Dr Earley's video explains quite well).

3. VIewsAskew (a 3rd moderator) has used a system of alternating several days with an opiate and several with mirapex. She augments on dopamines after just a couple of days, but has been able to use the alternating system without experiencing augmentation (as far as I know).

4. I went from mirapex to neupro and am now on methadone. It took me 15 months to augment on neupro after switching from mirapex due to augmentation (on mirapex). It is supposed to take longer to augment on neupro due to the time release nature of the patch. The idea is that the amount of dopamine in the blood stream isn't going up and down between pills. I do not know of anyone who has alternated an opiate and neupro, but there is no reason why it would not work as well, or better, than alternating with mirapex.

5. One "advantage" of Lyrica is that it is part of a group of drugs called alpha-2-deltas. The others are gabapentin and Horizant. For many of us, the alpha-2-deltas are the only meds that treat our insomnia. Normal sleeping pills are frequently ineffective. All 3 of these meds can have some unpleasant side effects. Lyrica is known to induce thoughts of suicide in some individuals. Gabapentin is frequently responsible for causing weight gain and Horizant is simply a modification of gabapentin that allows for more predictable dosing. Personally, I have not tried Lyrica because gabapentin works well (and is MUCH less expensive in the US). I take gabapentin 30 minutes before bedtime and as long as my methadone has my RLS urge to move symptoms under control, I will be asleep with 45 minutes. The downside is that all 3 of the wear off after about 4 hrs, so they help me to fall asleep but do not keep me asleep for more than 5 or 6 hrs.

6. If you have been taking oral iron along with something acidic (orange juice or vitamin C) and on an empty stomach, then you have not seen much gain it it has been months. In that case, an iron infusion might be worth considering. However, if you were not doing all of the above, then maybe you should try again. There is a risk of severe allergic reactions from iron infusions, so you really need to be certain that oral iron isn't working before you decide to take that risk.

Finally, about the only unusual thing about your experience with your doctors is that you were fortunate enough to have a GP who is willing to work with you and to learn. Most of us have not been as fortunate with our first doctor(s) and have had to search to find one who either really knows about RLS or who is willing to admit that he/she does not know but is willing to learn. Even those of us who are fortunate enough to be a patient of one of the experts often find ourselves almost working as an equal to the doctor when it comes to deciding upon our treatment program, once we have been around this discussion board for a while.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Wed Aug 31, 2016 5:23 am

legbestill, I feel for you, if that's any help! I have been taking 20 mg of oxycontin in the evenings, which is enough for my legs to be completely under control and for me to sleep well. I take another 10mg of oxycontin around 6 am, and still another 10mg of oxycontin around Noon. How I got in into the pattern of taking the oxycontin around the clock is a long story, so I won't bore you here. I shouldn't need oxycontin during the daytime as my legs don't usually bother me then. But trying to drop either of my daytime doses has proved difficult. I feel like I am in withdrawal, but it doesn't make any sense to be in withdrawal after skipping one dose. While my legs are fine on my current regimen, and I sleep well, I don't feel well. I am very tired, yawning constantly, sleeping a lot during the day and I have no energy. I can't ascribe these symptoms to the oxycontin with any certainty. I started taking an anti-depressant. I am in the fifth week. So far, no effect. It seems unlikely to me that the the anti-depressent will help increase my energy if I have not felt any benefit by now. The status quo is not acceptable to me, so I am determined to reduce the amount of oxycontin I am taking, on the theory that it must be accounting for some of my current symptoms, perhaps the excessive tiredness and yawning. So, for the last three days, I reduced my evening dose of oxycontin to 10mg and I added, with some trepidation, 0.125mg of pramipexole (which you refer to as mirapexin). I say trepidation because augmenting on the DAs is what caused problems for me in the first place. That combination has worked pretty well. But I wake up around 5am to 6am feeling that I really need my next dose of oxycontin. The combination does not control my legs as well as the 20-mg dose of oxycontin did. I am not sure where I go next. I really wanted to stop the daytime doses of oxycontin. I can't get methadone here in Thailand, and my opiate options are limited.
David

Polar Bear
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Re: Getting off pramipexole etc.

Postby Polar Bear » Wed Aug 31, 2016 5:45 pm

legsbestill - Yes, I am in Northern Ireland and just how our NHS system may vary from yours I don't know (even though you are only 100 miles 'down the road'.
Well done on getting off the Mirapex, that was a big step.

I also have a sympthatetic but self confessed RLS ignorant GP. He will pay attention to information that I'd present if it's coming from a reputable source, i.e. the Foundation site and their Publications. Unfortunately he is not happy about opiates and what he prescribes for me in the way of opiates is probably as much as I can hope for.
My medication is --- ropinerole which I've been on for many years, this is supplemented with Maxitram 50 twice daily, this is slow release. I also supplement with cocodamol 30/500 x 4 daily. Maxitram and Cocodamol is as high on the opiate scale as my GP will venture.
For sleep - after trying several types of medication I'm now taking Clonazepam which helps somewhat but the 'somewhat' is still only about 3 or 4 hours of fractured sleep.

With our NHS system we cannot easily move to another GP, and don't know about when in Dublin. However if your GP is willing that is a bonus. I do understand what you mean about feeling that your GP is too accommodating, it is a big responsibility to ask for a particular treatment knowing that your doctor may agree too readily.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

The Dr Buchfuhrer who is one of the authors of this book will respond to emails and many of us have written him, he generally replies quite soon. His address is somno@verizon.net I've taken his email correspondence to my GP and thankfully he has been accepting of the guidance therein. This could be a consideration before taking the step of travelling to Baltimore to see Dr Early.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

The neurologist that I saw here in N.I. (at my own expense) was a waste of time, hadn't a clue about RLS. My RLS is in legs and arms has a history of 30 years and for most of that time it has been 24/7, including prior to medication, At present I manage, partly because I am now retired and not clock watching in the middle of the night.

As for your sleep specialist deciding that the torment of RLS is preferable to the the muzziness of a medication - would she be willing to agree to a trial run to see how it goes. It isn't reassuring that she takes so long to respond to an email.

Knowledge is everything, I'd suggest you get the book mentioned above, get familiar with it, and use it for informed discussion with your GP.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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