Getting off pramipexole etc.

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dgarmaise
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Getting off pramipexole etc.

Postby dgarmaise » Tue Jan 19, 2016 2:36 pm

Hi. Well, here I am with another update of sorts. I've been on pramixole for more than two decades, with occasional attempts along the way to change to another regimen. For the last year or so, until recently, I was taking 0.25 mg in mid-afternoon; and 0.375 mg around 7.30 pm, combined with 2mg clonazepam and 50 mg tramadol, It was more pramipexole than I would have liked, but it was working, at least as fas as my legs were concerned. Suddenly, about eight week ago, my legs got much worse. I upped the evening dose of pramipexole to 0.625 mg, making my total daily dose 0.875 mg. I knew that would not do. I thought that If I switched to ropinarole for a couple of weeks (i.e. take a holiday from the pramipexole), I might be able to go back on the pramipexole at a lower dose. I don't like ropinirole, but I took it for two weeks. I had to go to 8mg prolonged release to control my legs. I did not feel well. After the two weeks were up, I went back to pramipexole, but i had to keep the dose high. I went to see my latest neurologist in Bumrungrad Hospital in Bangkok. I think she is the fifth neurologist I have had in the last five years. My opinion of her goes up and down, but I must she she has been super helpful this time in letting me phone 2-3 times a week to report progress. She suggested I switch from pramipexole to rotigotine (the patch). I was skeptical because I had tried the patch before and given up on it. (and it is still a dopamine agonist.) But I went along. She suggested starting with the 2mg patch. Here, I must digress.

For about five years now, I have been complaining to anyone that would listen that I have low energy, especially in the late afternoon and evenings. No doctor has even been able to figure it out, except to say, "You know, you're not getting any younger." I'm 68 (now). Well, you know: The day I stopped the pramipexole, I felt absolutely fine in the evening. . Four glorious hours of remembering what it felt like to feel normal energy in the evening? Of course, it couldn't last.

That evening, I put on the 2mg patch. It was not enough to control my legs. I didn't sleep a wink until around 6 am when I took some lyrica and got about two hours sleep. We upped the dose of the patch to 4mg (already about the maximum for RLS, they say). Still wasnt't enough. Took some lyrica and had a drug interaction which lasted through the next day. The doctor recommended I stick with the 4mg patch and take gapabentin. I have had that drug before, but in large doses), and I know many people hate it. I started at 100 mg; my legs were not controlled; I increased to 200 mg; my legs were almost controlled but I had side effects: mainly grogginess and the need to sleep a lot. After a few days to let the side effect abate, I went up to 300 mg gapapentin (still with the clonzepam and tramadol). With that dose and the patch, my legs are under control. The side effects are strong. Groggy during the day; sleeping 13-14 hours a day including an afternoon nap; only able to be really productive 6-7 hours a day. After three days 300 mg gabapentin, the side effects seem to be diminishing. Possibly the worst side effect all: My blood sugar soared. I am diabetic. It looks like I will have to go back on insulin. Don't know if I want to be on that regimen if it means more insulin. The neurologist hinted that while SHE would never ever prescribe a narcotic for RLS there is a pain doctor in the hospital who might. Meanwhile, kratom has helped me get some much needed sleep. I want those four hours of feeling great back!
David

ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Wed Jan 20, 2016 4:17 am

So, you're using the patch and gabapentin, David? I know you know it...you have to stop all the DAs and see what your symptoms would be like without them. I do hope that pain doc will help you. Or, if you aren't working, you could just stop it all (carefully!) and spend 10-20 days of mostly misery, then find out what your symptoms are like. You might find that you only need a bit of kratom.

And, those 4 hours...what a great memory to hold on to and hope for.
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.

Sojourner
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Re: Getting off pramipexole etc.

Postby Sojourner » Wed Jan 20, 2016 6:49 am

dgarmaise wrote:Hi. Well, here I am with another update of sorts. I've been on pramixole for more than two decades, with occasional attempts along the way to change to another regimen. For the last year or so, until recently, I was taking 0.25 mg in mid-afternoon; and 0.375 mg around 7.30 pm, combined with 2mg clonazepam and 50 mg tramadol, It was more pramipexole than I would have liked, but it was working, at least as fas as my legs were concerned. Suddenly, about eight week ago, my legs got much worse. I upped the evening dose of pramipexole to 0.625 mg, making my total daily dose 0.875 mg. I knew that would not do. I thought that If I switched to ropinarole for a couple of weeks (i.e. take a holiday from the pramipexole), I might be able to go back on the pramipexole at a lower dose. I don't like ropinirole, but I took it for two weeks. I had to go to 8mg prolonged release to control my legs. I did not feel well. After the two weeks were up, I went back to pramipexole, but i had to keep the dose high. I went to see my latest neurologist in Bumrungrad Hospital in Bangkok. I think she is the fifth neurologist I have had in the last five years. My opinion of her goes up and down, but I must she she has been super helpful this time in letting me phone 2-3 times a week to report progress. She suggested I switch from pramipexole to rotigotine (the patch). I was skeptical because I had tried the patch before and given up on it. (and it is still a dopamine agonist.) But I went along. She suggested starting with the 2mg patch. Here, I must digress.

For about five years now, I have been complaining to anyone that would listen that I have low energy, especially in the late afternoon and evenings. No doctor has even been able to figure it out, except to say, "You know, you're not getting any younger." I'm 68 (now). Well, you know: The day I stopped the pramipexole, I felt absolutely fine in the evening. . Four glorious hours of remembering what it felt like to feel normal energy in the evening? Of course, it couldn't last.

That evening, I put on the 2mg patch. It was not enough to control my legs. I didn't sleep a wink until around 6 am when I took some lyrica and got about two hours sleep. We upped the dose of the patch to 4mg (already about the maximum for RLS, they say). Still wasnt't enough. Took some lyrica and had a drug interaction which lasted through the next day. The doctor recommended I stick with the 4mg patch and take gapabentin. I have had that drug before, but in large doses), and I know many people hate it. I started at 100 mg; my legs were not controlled; I increased to 200 mg; my legs were almost controlled but I had side effects: mainly grogginess and the need to sleep a lot. After a few days to let the side effect abate, I went up to 300 mg gapapentin (still with the clonzepam and tramadol). With that dose and the patch, my legs are under control. The side effects are strong. Groggy during the day; sleeping 13-14 hours a day including an afternoon nap; only able to be really productive 6-7 hours a day. After three days 300 mg gabapentin, the side effects seem to be diminishing. Possibly the worst side effect all: My blood sugar soared. I am diabetic. It looks like I will have to go back on insulin. Don't know if I want to be on that regimen if it means more insulin. The neurologist hinted that while SHE would never ever prescribe a narcotic for RLS there is a pain doctor in the hospital who might. Meanwhile, kratom has helped me get some much needed sleep. I want those four hours of feeling great back!


While I hope you are doing better, reading your post again causes me to reflect the lengths and many different medication regimen many of us go through to try to deal with this disease. Best of luck.


Wishing all who visit here some peace this night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

dgarmaise
Posts: 111
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Location: Pattaya, Thailand

Re: Getting off pramipexole etc.

Postby dgarmaise » Mon Jan 25, 2016 9:06 pm

Ann, is the theory that the because the DAs cause augmentation, when you go off the DAs, the symptoms will be bad at first but should improve after X weeks? How long is X? Does it vary a lot, depending on the person? When you go off the DAs, and your symptoms are bad, is this a combination of the augmentation and withdrawal from the DAs? And if your symptoms lessen after X weeks, is the idea that you then try to find a cocktail that will control your legs that does not contain a DA and that does contain an opiate? Is the idea to stay away from the DAs completely? I ask because both gabapentin an pegabalin seem to cause me problems, and I wonder what is left besides opiates? Kratom helps, but I don't know that it could "carry the whole load," and its is quite addictive I believe and anyhow it is illegal in Thailand.....
David

ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Tue Jan 26, 2016 4:57 am

Yes, that is the theory. And, many of us have proven that out.

Your symptoms are crazy at first. Some doctors - say at Johns Hopkins - believe you are best off with nothing at all. By day 5, they say you should feel somewhat better, by day 10, a lot better. Our members have found that some are better at day 5, and others don't start to get better until day 10 or so. Most of them find that by day 15 or so, you really can tell what your symptoms are like. Some have not needed medication at all. Others need it. Almost all need less than before.

Other docs - say Doctor B - believe that the best way to get through that 5-15 day washout is to use a strong opioid. Then you can stop the opioid and see what symptoms you really have.

Most say you have to stay away from the DAs, but I don't think you do...not if you alternate occasionally so that you do not augment again

What I did...I used the opioid approach. Like you, I couldn't use gabapentin and those similar to it. I thought I was stuck on it. But after tolerance, I was determined to find another option. For years, now, I've alternated a DA (about 5 days a week) with an opioid (2 days). But, I have to wonder if I'd not had tolerance if I could have used kratom for those two days. No more augmentation, no more tolerance. Just coverage. I keep the DA use to 5 days because I originally agumented in about ten days. If I'd augmented in a few months or years, I'd likely be happy to try DAs about 25 days a month, then 5 days off.
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.

JimmyLegs44
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Joined: Thu Oct 01, 2009 5:24 am

Re: Getting off pramipexole etc.

Postby JimmyLegs44 » Tue Jan 26, 2016 2:05 pm

It took me at least 4 weeks to feel like I was mostly through the withdrawal, and I was only taking 0.375 mg of pramipexole. I only got 7 hours of sleep once in the first 30 days. The first week, I averaged about 2 hours per night. It gradually improved from there. I'm on day 48 off pramipexole, and I'm averaging just under 7 hours of sleep per night now.

I used Lyrica as a covering agent (300 mg). I think it helped reduce the severity of my symptoms during the withdrawal, although it probably didn't significantly help with the amount of sleep I got, since I didn't get much the first couple of weeks.
The best way out is always through. - Robert Frost

jul2873
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Re: Getting off pramipexole etc.

Postby jul2873 » Sat Jan 30, 2016 8:33 pm

Hi David,

I've read that kratom was made illegal in Thailand because it was cutting into their opium trade, which raised a lot of tax money. But Thailand now has a serious opium problem, and I've read that they are considering making kartom legal again, since many people successfully use it to taper off of opioids. As far as addiction: I've used it every day for almost three years to manage the symptoms of RLS. I haven't tried to get off of it, because my RLS is severe, and there isn't any other medication that I would want to take. But many people on Reddit post about going off of kratom, and most say the withdrawal is much like quitting coffee--in fact, they say withdrawing from coffee is worse. I don't worry about addiction, since I don't crave it at all, esp. as I don't get any high from it. I just get a blessed relief from RLS symptoms.

dgarmaise
Posts: 111
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Re: Getting off pramipexole etc.

Postby dgarmaise » Sat Jan 30, 2016 11:16 pm

Jul, thanks for that information. As to Thailand possibly de-criminalizing kratom, that's been rumoured for the last few years. I am not sure how current what you read is. But as long as the military is running the country, I think that it is unlikely they would make a change to kratom's current status. Despite it being illegal, kratom is widely used by Thais, expecially in the South where it grows, but you never know when they might choose to crack down, no pun intended.
David

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Re: Getting off pramipexole etc.

Postby badnights » Mon Feb 01, 2016 9:43 am

I want those four hours of feeling great back!
I hear you! God, I hear you!
How are you managing? Have you decided to take the plunge and get off the patch? I've been on hydromorph contin for a few years now without serious issues, luckily. I supplement ad hoc with pregabalin (only 75 mg) to help me sleep some nights, and the evil DA levo-carbidopa (Sinemet) for fast relief when I can't sleep. The latter is renowned for causing augmentation but I make sure to never take it more than 2 nights in a row.
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.

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Getting off pramipexole etc.

Postby dgarmaise » Mon Feb 01, 2016 9:57 am

That's useful information. I'm not off the patch yet, but I hope to be soon. My neurologist wanted me two experiment with various combinations of the patch, gabapentin at different doses, and clonazepam (at different doses!). Some days the cocktail controlled my legs, some days it did not. But throughout I have had to cope with side effects. I went from one extreme (no sleep) to the other (sleeping 17 hours in one 21-hour period!). I have no idea what medicine is causing what side effect. It's clear to me that I need to get off the dopamine agonists completely for at least a few weeks, maybe longer. (You guys have been telling me that for a long time.) My neurologist finally gave in and set up an appointment for with Dr Nuk, the pain specialist at Bumrungrad Hospital in Bangkok. I see him Friday. I have no idea what to expect. I'll have to make the best pitch I can for him to prescribe an opiate to get me through withdrawal, and for him to consider prescribing an opiate post-withdrawal as part of an ongoing cocktail. Am I right in assuming that I will need a stronger dose during withdrawal? Will he know what dose to prescribe? My neurologist says that he has seen people with RLS before. She seems to be "handing me over" to Dr.Nuk. I don't know if I will see her again. You'd think they would take a team approach to solving problems like this. If I need to educate Dr. Nuk, what should I bring with me, besides Dr Buchfuhrer's 2012 "Strategies for the Treatment of RLS"?
David

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Re: Getting off pramipexole etc.

Postby badnights » Mon Feb 01, 2016 11:41 am

If you have the little book, bring that too (Hening, Buchfuhrer and Lee). If not, I have an extract on augmentation from that book that you can download (in my signature block under this post, click the link to get to the post; the extract is the one right under Buchfuhrer 2012). Ideally you would also bring a short precis on how to treat augmentation from the Hopkins group, to balance your approach and show you're not a drug-seeker, you're just a sufferer who wants to find the best treatment possible. The one link I have is sub-ideal, because it's a printout of their website in small font, but it does have a section on the very last page on how to treat augmentation.

Take the Johns Hopkins printout , the book extract, and the Buchfuhrer paper you already have. Highlight the important parts beforehand so the doctor knows exactly where to look in the limited time he has. Be willing to give the papers to him - bonus if he actually looks at them later. Some do!

Don't walk in there with a pitch to convince him to prescribe opioids. Walk in with a pitch to convince him that you want treatment to to become a productive human being again. Your pitch should include informing him that you are augmenting and withdrawaing, that augmentation and withdrawal from DAs consist of severe prolonged WED symptoms that extend to other body parts and last throughout the day and night, and that treatment typically requires complete removal of DAs (usually forever), addition of opioids for a period of time (and sometimes continuing), and raising blood ferritin levels above 100 with oral iron supplements. It's a complicated pitch, you can try going straight for the opioids, but you might raise red flags, and anyway the point is to stop the dread symptoms, so if he knows how evil it is to experience, he'll know how to stop it - with opioids - from the literature you've brought.

I told myself I would never write replies here afer taking zopiclone, and here I am doing it,. I beg your forgiveness if I have wandered into nonsense; hopefully the only ill effect is that I will not rememebr writing this.


Hoping everyone gets at least some deep deep sleep tonight.
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.

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
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Re: Getting off pramipexole etc.

Postby dgarmaise » Mon Feb 01, 2016 2:31 pm

Many thanks! I am not clear on which Hopkins book you are referring to, the one with the small print.... I didn't see one with small print... but then I again I'm writing after taking zopilcon too
David

dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Mon Feb 01, 2016 8:38 pm

I think I figured out which document has the small print: "What is Restless Legs Syndrome (RLS)" . Let's see if I can upload it. Oops. It says "File too large." It is only 368 kb.
David

dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Mon Feb 01, 2016 8:39 pm

Sorry, forgot to say in my last post that I managed to increase the font size.....
David

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Re: Getting off pramipexole etc.

Postby Polar Bear » Tue Feb 02, 2016 2:17 pm

Badnights - your last post on this thread is excellent advice for anyone needing to speak to their doctor, a great guidance to asking for help.
Betty
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