Weaning off Pramipexrole

[Tennwalker1]

It's great reading all the news about how everyone is doing. All the tips being presented and ideas. Good stuff friends.

I've posted a few thing about my life with RLS. Right now my situation has gone from bad to worse. I'm in the refractory stage. I'm weaning off pram. I was taking 14 pills a week and I have eliminated 9. It's very tough going. I would not be able to do it without the help from my hubs. I know I wouldn't be this far along.

I went to the mayo clinic, got a very good neurologist, whom I really like. I feel I've been thrown to the wolves. I no longer talking to her via portal, but the ' case team" and Nurse blank is wanting me to follow up with my gp. He knows nothing about RLS. Not his fault, just not his expertise. He's following Neurologist lead.

She has me on Tramadol 50mg. And it was 4am before I got to sleep. I'd say its not working.

I need a RLS doctor near me. Does anyone know one in the St. Louis, Missouri area? I would sure appreciate any help I can get.

Thanks so much.

[Parminter]

Tramadol can cause augmentation in some subjects too, so take care.

Did the Mayo Clinic not discuss low-dose opioids such as slow-release oxycodone or methadone? Surely they would have, they published the landmark paper which you can find here - mayoclinicproceedings.org/a...

Opioids would help hugely with your withdrawal and perhaps be a stand-alone medication for the future.

My GP does not know RLS/WED either, but I do the research and I take him scientific papers (including the one that I cite above) and he reads them and acts upon them. I would rather have a good GP who knows me and trusts me than a clueless specialist who does not.

[Tennwalker1 in reply to Parminter]

OMGosh, I didn't know that about the landmark paper that was written. Thank you so much. I'm going to print it off. Also, she seemed very reluctant to prescribe an opioid and wanted me to try Tramadol or Codeine. When i was younger the Codine made me sick. I opted for Tram.

I'm so excited. It will be almost 4 mos weaning off Pram. Kind of scary when you can't find something help. But you did.

Thanks Parminter. Appreciate it so much. Also wise words about the good GP.

[rls_optimist in reply to Tennwalker1]

Hi, Tennwalker, I second Parminter's remarks. I'll add that both Tramadol and codeine are opioids, so not sure what you mean when you say that she was "reluctant to prescribe an opioid". Tramadol is the stronger of those two, but may not be strong enough to help you wean off the pramipexole. As that article makes clear, methadone is the top choice among RLS experts, due to very high efficacy, long acting, low chance of addiction, and milder side effects. But oxycodone, especially long-acting type, is also very effective. Good luck!

[Tennwalker1 in reply to rls_optimist]

Thanks so much. Yes, shall we say lesser of two evils. Lol. Sorry for the confusion. I was referring to Oxy Morph. She was reluctant for either. I guess maybe she wanted to start me out on the mildest first. Thanks for clearing that up.

Always, thank you for your help.

[involuntarydancer]

Hi Tennwalker,

First, well done for taking action regarding the pramipexole. It is a hard road but very worth it. So far as medical care is concerned, it is sadly a widespread experience of rls sufferers that they have to educate themselves fully about the condition and the various treatment options and then undertake the difficult task of passing on their knowledge to their GPs - who are often very reluctant to take it on board. This is particularly hard for those going through the process of withdrawing from pramipexole as many health care providers have absolutely no idea of the torture involved in that process. The paper Parminter refers to is excellent and a good starting point for your primary healthcare provider. A second option is to order the medical textbook on RLS by Drs Buchfuhrer, Allen, Lee and Henning - Clinical Management of Restless Legs Syndrome. It can be purchased on Amazon and is reasonably affordable for a professional textbook. It is difficult for a GP to ignore information of this calibre. I wish you all the best with your continuing withdrawal. It will definitely be worth it in the end. Even without opioids, it is possible - though very difficult - to withdraw from pramipexole and it really is worth sticking with it.

[Tennwalker1 in reply to involuntarydancer]

Thanks involuntarydancer, I really appreciate you and everyone else for taking the time to help me. Everyone's input is necessary and needed.

Monday, Tuesday & Wednesday makes my 3rd night in a row with no Pram, just a 5:30pm Lyrica 225mg. Praying God will get me through this.

Thanks again

[involuntarydancer in reply to Tennwalker1]

That is amazing - well done you. There can be no going back now. Many people start to experience an improvement after about a week of eliminating. Be aware that as you get really exhausted this can itself exacerbate the rls so it is important once the drug is washed out of your system to ensure that you start sleeping again. It might take something like opioids to interupt the cycle of symptoms and then exacerbation due to exhaustion. If you find no improvement after about 14 days (I'm sure you will but just in case), then go to your GP and beg for something strong for a few days just to get you back on track with the sleeping.

[Tennwalker1 in reply to involuntarydancer]

Thanks again, I will do my best. All your words of wisdom have come at just the right time.