Stopped prameprexole and need help

Hi first post and looking for help. My wife had an operation 3 years ago and was put on oral morphine. It has taken her until 1 month ago to wean off and stop the morphine with help only from forums and not doctors. About 6 months ago she was prescribed pramipexole due to rls caused by morphine reduction after a while this worsened and her final dose was 2x .18mg. About a month ago she started reducing them and stopped completely last Wednesday after reading how bad they are. She too was told by her doctor they were not addictive and it was easy to stop them. For the last week she hasn’t slept more than an hour or two a night if at all. She has all the symptoms of withdrawals etc including feeling down but not suicidal I’ve just spoken to the doctor and he has suggested going back on them at .088mg and being reviewed next week. We have all opiates in the house if needed. She has been taking codiene or tramadol to try and help a bit so she can try to sleep. What we wanted was some advise as to wether to go back on them and follow the doctors advise or stick it out as she has been doing. She feels that starting them again is like a wasted week only to have to do it all again. Any help or advice will be gratefully received. Thankyou.

16 Replies

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  • Hi, Dkc1,

    I’m still new to this site and not very knowledgeable about rls, but wanted to say a couple of things. First, this site has great members who are wise, kind, and compassionate. Second, I just came off Ropinerol and can empathize with your wife....it is a very hard thing to do. For that reason my first reaction is......don’t waste all that hard work and suffering by restarting the Pramipexole and having to do it again. Is there a physician who could guide you in the use of the opiates? If not, I would think that judicious use of small doses could help her get through the time until she sees the doctor. If “older and wiser” members think this is bad advice, please listen to them, not me! But I really would hate to see her lose the ground she has gained.......I know that I would never take Ropinerol again!

    Good luck, and my prayers are with you both,

    Patmac

  • I have been using Tramadol 100mg slow release for about 5 years now and it keeps the restless legs under control. I take it at 1800 every day and I sleep fine. If I get over tired then sometimes I get symptoms but not often.

  • Thankyou so much for responding. She took tramadol last night and a sleeping tablet before bed and slept for the first time in ages. Definitely not starting the tablets again. Hopefully this will pass with time.

  • It would be nice if your doctor told you what the options might be after reevaluating in a week. I feel for your wife AND you. I know how hard it is to come off pramipexole and I also know the hell my husband went through watching me do it. Patmac's reply is spot on. It is such a hard process that you don't want to risk having to do it over again by raising the dose. But, if like Patmac suggested, you can find a doc that would consider bridging her with opiates while she comes off the pramixepole, it might be worthwhile letting her up her dose per her current doc's instruction just so she can get some sleep. She is probably having some pretty severe sleep deprivation symptoms in addition to the withdrawal symptoms. Good luck with this. It is awful to go through but so much better once that stuff is out of your system. I would never, never, never, never take that awful drug again. My current doc , the one that managed to get me through the withdrawal, is trying to get it off the market in this country but the drug companies have a lot of clout AND they still have not admitted that it is addictive. It's all about the money with them.

  • Thanks for your response very helpful and filled with hope. She took tramadol last night and a sleeping tablet before bed and it worked she slept. We have all the opiates due to her history and my back pain so we are covered mean time. How long did it take for you to fully withdraw off them and were you left with ongoing rls. I hope not. Thanks again

  • RLS is kind of strange; it is probably the one disease that stands a chance of actually getting better as you get older. Mine is not completely gone but it only bothers me between the hours of 3am and 7am now as opposed to all day. After the intial withdrawal period which reduced me from 20 mg to 10mg unaided by an opiate bridge, I took a 3 month break to recover. I had been pretty sick during withdrawal and was admitted to the neuro intensive care unit at Johns Hopkins Hospital due to seizures and losing consciousness about 10 - 15 times/day. The seizures were severe enough to tear up muscle tissue. After the three month break I felt strong enough physically and emotionally to finish the job. I decreased my dosage by 2.5mg every 5 days with an opiate bridge. So the final part of the withdrawal took 20 days...but it was a lot easier this time. Your wife might want to keep a food diary and activity diary. She may find that certain foods aggravate her RLS as do certain activities. I have to avoid the computer after the dinner hour. I also have to avoid chocolate, caffeine, MSG and soy products. Not surprising since the evidence shows those to be aggravating for RLS. The soy and MSG are tricky; they seem to be in everything. You'll spend a lot of time reading ingredient labeling. Please assure your wife the goal is worth the struggle. She will feel better once she's completely off the pramixepole even if she has to take something less noxious to control symptoms. I didn't realize the fog I had been living in until I was off of it; suddenly the lights went back on! I hope your wife has a compassionate doctor to help her through all of this. I really credit mine, Dr. Christopher Earley, with getting me through it. I hated him at first when I went through the first withdrawal. You may even see a few posts from me early on where I thought he was the devil incarnate. But when he realized the severity of my RLS and suggested the opiate bridge things got easier. I'll never forget the end of this whole process when he told me "you have no idea what you have just accomplished. I'm proud of you." Good luck to your wife. Email me any time even if it's just for a little encouragement. She's doing the right thing and she'll make it.

  • Hi cats, i remember you well, when you were going through the nightmare of coming off your dopamine med, I didnt know Dr. Early allowed you a backup med in the end. We have another member on here who is doing the withdrawal of a dopamine med with Dr. Early, i know they were struggling just after a couple of days. I hope they see this comment from you and know if things get sooooo bad they will be allowed a backup med. Good to hear from you.

  • Hi Elisse, Good to hear from you. I really feel for your friend. At 3 days I was having bad sleep deprivation symptoms and it only got worse. After the hospital admission, I swore I would not go back to him so I went back to my old sleep doc and he put me right back on pramixepole but in patch form. Within days he started increasing my dosage and we were back on the same merry-go-round. He did not believe in augmentation. So it was back to Dr. Earley and he has been wonderful. I am on 10mg methadone and have never had to increase my dosage. The only difficulty with it is getting it - you have to jump through a lot of hoops and most pharmacies here don't carry it! My pharmacist is very important to me now! Dr. Earley has been willing to let me try other medications - gabapentin for example - and has been very patient while I learned they do not work for me. No "I told you so's". Please tell your friend that while Dr. Earley can seem kind of detached when you first start this withdrawal process, he really has to be. It's a very hard thing to do. As he told me afterwards, this is more difficult than any opiate withdrawal and it takes determination. His psychology worked on me. I was so mad I was determined I would do it. Good luck to your friend. I will keep my fingers crossed for her.

  • From experience a 50-100mg dose of tramadol at bedtime really does seem to help with RLS. I’ve seen other posters that have said the same, but I would suggest seeing if it works for a few days and if so ask the dr to prescribe it on that basis. I wouldn’t want her to take what she has only to find that her dr then won’t continue prescribing it! Good luck, I hope she finds something that works soon. RLS is so debilitating 😞

  • Hi tramadol 100mg and a sleeping tablet worked last night so that’s the way forward for now hopefully it will continue to work. Thanks for responding.

  • Hello dck c

    I would say your wife would be best trying Tramadol in a very small dose to try getting sleep. As other members have said, going back to Pramipexole or Ropinirole is not really a good idea without at least trying something else. Although it must be said that Tramadol is addictive, so take as little as possible to get some sleep.

    Good luck and best wishes.

  • Tramadol worked last night so that’s what we will do for now and just monitor it daily. Thanks you

  • Hi,

    Yes, I've been taking tramadol 50mg at night for the past 10 years and it stops my RLS completely. If, for some reason I forget a dose, or on occasion, there is an empty capsule* then it returns. At this dose it is highly unlikely to become addictive and in any case far less so than morphine. In any case, at, 70 I am not going to get too worried about this - more likely to wake up with a meat cleaver in my head for kicking my wife!

    I discovered this effect completely by accident and think it should be clinically trialled by the manufacturer for this indication.

    Hope this helps

    * This does happen from time to time.

  • Thankyou for the help tramadol worked last night and long may it continue. Thankyou for responding I hope it continues to work for you. Oh maybe hide the meat cleaver

  • I would try to wean off prameprexole is the rls is no longer a problem. .088uG is very small and the side effects should be bearable, if unpleasant for a short time.

  • I suffer from RLS, I tried sleeping pills for my sleep which helped that part of my problem. I soon found out the drug had side effects that controlled me, so I went off of them. I read that some of the drugs that help with problems after so long can cause more problems. I have been off the sleeping pills for over 10 years, but my RLS is getting so bad that I am formulating a plan to go back on them for short periods at a time for my health. I have had open heart surgery, three years ago, followed by two strokes, and my insominia is really bad

    I don''t know about morphine, So maybe try a strong sleeping pill for just short periods, it won't heal anything, but it will give you more strength to fight it. let me know for as of yet i haven' gone back on them so LOL need a guinea pig.

    hgvlm

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