Getting off Pramipexole

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DreiTageWach
Posts: 11
Joined: Wed Sep 25, 2019 8:15 pm

Getting off Pramipexole

Post by DreiTageWach »

Dear Community,

I am currently undertaking my second attempt at getting off Pramipexole to see if I can manage my symptoms without it once I am back to baseline. Over the course of about 10 years my dosage had crept up to somewhere between 0.5mg and 0.75mg. I read almost all posts on this forum by people who have gone through the process of weaning themselves off a dopamine agonists and I am very thankful all these reports. There is no way I would be able to keep going without knowing that there are people out there who have made it and ended up in a better situation!

So far I've made it to seven days without Pramipexole, but I am getting a bit worried because my symptoms have not improved at all (today it feels worse than the days before actually). Symptoms are present 24/7 and there is no time of the day where I could lie down without the sensations going crazy after a minute. I have only made it this far thanks to Kratom, which I take occasionally at the smallest possible dose. I only take as much as is necessary to get me about 2 hours of sleep (about 4g).

Has anyone else experienced these withdrawal symptoms for such a long time with no apparent improvements? I should probably also mention that I didn't taper. I went pretty much cold turkey a week ago, so that may be a contributing factor. Also, do you think that taking Kratom every now and then drags out the process or maybe even prevents my brain from effectively getting back to some baseline? I read that it is recommended to quit all drugs completely for two weeks. But I don't think that would be possible in my case, I would have to somehow make it through these two weeks with no sleep whatsoever.

Many thanks!

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Getting off Pramipexole

Post by stjohnh »

Don't give up DreiTageWach, If you have made it 7 days you have passed the worst and improvement should start soon. I know it has been awful, but don't give up, you have done the hardest part.

It is very unlikely that you will ultimately be able to manage with no drugs, even when the pramipexole withdrawal is complete. It is likely that the many years of high dose pramipexole has caused some permanent damage to your dopamine receptors.

Reasonable expectations of what will likely be your end treatment are:
1. Opioids
2. Combination of gabapentin and kratom.
3. Combination of kratom and very low dose pramipexole (1/2 of a 0.125mg tablet daily)
4. Combination of 3. plus gabapentin.
5. Opioid combined with some combination of the above.
Blessings,
Holland

tagalongbuddy
Posts: 36
Joined: Thu Feb 06, 2020 5:57 am

Re: Getting off Pramipexole

Post by tagalongbuddy »

Several years ago I had to stop pramipexole as well. If my memory serves me correctly---my neurologist had me slowly taper off pramipexole while at the same time slowly begin ropinirole. It controlled my symptoms for several years. then I augmented on ropinorole. The neurologist then had me slowly go off ropinirole at same time take oxycodone for 10 days---which worked very well. Then I slowly went back on ropinole and he started me on gabapentin as well. Much higher does of gabapentin. He thinks the 2nd med will help delay or hinder augmentation. So I am holding pretty steady.

badnights
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Location: Northwest Territories, Canada

Re: Getting off Pramipexole

Post by badnights »

He thinks the 2nd med will help delay or hinder augmentation. So I am holding pretty steady.
That's like what Holland suggests with #3 and 4 - very low dose of a dopaminergic medication plus one or two other medications from different classes. Combinations are usually effective at keeping doses of any one medication low.

But DreiTageWach: you will have to work with your doctor on this.

I don't think cold turkey is the reason you've not experienced improvement yet. One week is not unheard of, so hang in there, you definitely do not want to give up when you've come this far - - but have you been talking to your doctor? You have to get him / her on board ASAP so you can take something to manage your symptoms - as Holland said, you are unlikely to be lucky enough to do without. And btw - when he says permanent damage, I would say long-term :) - because we don't really know.

Are you taking iron? That is the one thing besides opioids/kratom that can dramatically change your experience of the symptoms.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Getting off Pramipexole

Post by Polar Bear »

Just to say congratulations on getting this far, you are doing brilliantly.
Two years ago after augmenting on ropinerole I decided I had to come off it and did so by weaning very slowly over a period of ten months. I used Codeine to help this along, and I now take Codeine and Lyrica. The Lyrica is actually prescribed for neuropathy but as a bonus it is also a drug used for rls.
The day I took my last ropinerole I felt so proud and wanted to go into the town square and cheer. I couldn't have done it without the continued support of the members here.
Keep going, hang in there, you have come so far. You have done the hard bit and things will start to improve.
You will get there.
Betty
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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

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