Update on Weaning off of Pramipexole

[abby1003]

Hello Everyone,

I am posting in case this might be helpful to those going through getting off Pramipexole (PRAM) or thinking about it. I posted last Sunday about not feeling comfortable reducing the PRAM, but through encouragement on this site, I took the deep dive. I was taking .25 for about 5 years and started having augmentation, which is the reason for wanting to stop taking it. I am 5 days into reducing the PRAM by half, now taking .125 approx. 2/3 hours before bedtime. I am also NOW taking Pregabalin (PREG) - 150mg.

Reducing PRAM has been a very odd and uncomfortable experience. In addition to the PREG, I also have been taking 1/2 THC gummy and a Lunesta at night. I have had a very difficult time getting to sleep, at night my legs ache horribly and my knees especially hurt, I am not having intense RLS movements, but I cannot stop moving my legs. Yesterday, I also had a very strange OVERALL feeling of discomfort, I felt like I was having withdrawals (even though I'm not quite sure what that would feel like?). I have also been VERY tired (perhaps the lack of good sleep.) Luckily, I do not feel depressed, which I have read some people experience during this time. I am also putting on compression socks when I go to bed, they seem to help a little with the pain. Last night (5th night in), I took double my PREG because I could NOT get to sleep. I took it around 11:00 and I did end up falling asleep. The caveat is, however, I FEEL DRUGGED today and it's almost 3PM. I will keep this up until I have reached 2 weeks and then I will cut my .125 in half (.0625) and take that for another 2 weeks and then I will be finished weening off the PRAM.

Per the advice of this forum, I am also now taking an iron supplement and Vitamin B6.

Good luck to everyone out there trying to get off any DAs.

[SueJohnson]

You are reducing too fast. You should only have reduced by half of a .125 tablet, so I would suggest you go back up by that amount and then wait for the symptoms to settle.

[abby1003 in reply to SueJohnson]

Hi Sue, so you think I should be taking .1875 (not cutting the .25 in half)? I could start that tonight, yes? If I do that, I would wean off in 6 weeks, if I do 2 weeks each, reducing by .125.

[abby1003 in reply to abby1003]

Thank you : )

[SueJohnson in reply to abby1003]

Correct - go back up to .1875.

[tagaxel in reply to abby1003]

If that doesn't work there's even a slower way to get off pramipexole. It's called micro tapering. That's what I'm doing. You end up taking the solid pill to a compounding pharmacist and having it rendered into a liquid so that you can withdraw infinitely small doses each day thereby tricking the CNS from noticing the reduction.

[abby1003 in reply to tagaxel]

WOW - that's interesting. I was able to cut my .125 in half last night and I had a much better night, did not double the Pregabalin and feel like a different person today. Fingers and toes crossed I can wean off over the next 6 weeks. If I have trouble, I will consider your suggestion. Thank you! If you don't mind me asking, what are you tapering down FROM?

[Munroist]

You seem to be approaching this really well and carefully which is great. Hopefully reducing more slowly as Sue advises will reduce the feeling of withdrawal. It’s difficult to know when or if the withdrawal feelings will subside but they are sort of understandable when you think about the fact that you are changing the way your body experiences dopamine. Pregabalin can make you feel a bit foggy at times but if it helps you sleep then it will probably be worth it. The good thing about it is it’s not as difficult to come off if you really don’t get on with it so it’s not like dopamine agonists. It’s still a good idea to reduce or increase pregabalin in small amounts so you can get used to the changes and not get panicked by them. Additionally some people find gabapentin easier to live with so there are options but until you are clear of domaine agonists it will be difficult to tell and the pregabalin won’t be fully effective. That probably says you shouldn’t go up to too high a dose initially as you may feel a lot of side effects but not very much benefits which can negatively colour your experience. . Thanks for sharing your journey and best wishes and good luck.

[abby1003 in reply to Munroist]

Thank you for your encouragement and information. Sue set me straight on the dosage and I already feel MUCH better today. : )

[SueJohnson in reply to abby1003]

That's great !

[Bridip68]

Co codamol may help

[fishinphil1946]

Abby,

My experience with PRAM is different than yours. You were on 0.25; I was on 2.0mg/day for about 10 years. I reduced by 0.125/2 weeks for 32 weeks. Perhaps the starting point determines what percentage you can reduce to 0.0. I will defer to Sue Johnson for your situation. At one point, I did need to slow down and stay at one level for 4 weeks. Also, your "agony" during the process probably means that you should reduce at a slower pace. Even at 0.000 you will feel some withdrawal for a variable period of time. Everybody is different, but the goal is still 0.000.

I reduced the PRAM because I gained 50 pounds. However, I try to sleep at 11pm, but often am awake until 2-4am. I still binge eat during this period. I have been on 1500mg gabapentin for the same 10 years. I have peripheral neuropathy in my feet, ankles and shins all day long. RLS occurs at night in my body and arms when I am tired. The socks can help.

Keep it up and get to 0.000. It may not fix everything, but it is the right thing to do.

[abby1003]

Oh my goodness, I'm so sorry to hear you have had such a horrible time with RLS and PRAM. I really appreciate your input and encouragement.

[Kejimkujik]

I am in the process of tapering off pramipexole. I was taking 0.25mg x 3 daily and had gone up to several days needing 4 x 0.25mg tablets. I started with an iron supplement every other day about a month or so before I started tapering. Then started taking 300mg gabapentin in the evening three weeks before I started tapering the pramipexole. I starte, March 1st, by reducing by 1/4 of one tablet. I staid on this for a few days and then reduced by 1 x 1/4 of one tablet again. I also increased my gabapentin. Once I had the gabapentin up to 800mg I found I had terrible side effects of dizziness, brain fog and confusion when I woke due to RLS at night. I have since reduced the gabapentin down to 3/400mg around 8pm in the evening. I continue to take 325mg iron alternating nights around 10pm. I have started with BUP/Naloxone now to manage the RLS. I started with 1/8 of a 2mg/0.5mg tablet (also known as Saloxone I believe). I found this did alleviete the RLS but not completely and for a short period of time. I find for me 1/4 tablet of the Saloxone seems to work. I have to take it around 10pm at the latest. If I take it later than that I am often very dizzy and slow with brain fog in the morning plus queasy for a few hours. I have found aloe vera juice really helps with the nausea. I take a Betahistine when the dizziness and brain fog is very strong and it makes a huge difference. I was prescribed the Betahistine for dizziness and brain fog from a traumatic brain injury I had two years ago. The symptoms from Saloxone are very very similar so gave the betahistine a try and it worked great. I only take it as needed and try to take the saloxone before 10pm to avoid the morning affects. Tosay I recuced the pramipexole to 3/4 of one tablet.......period. I am happy with my progress but have to be very strict about not rushing it and just stoppibg given it seems so little. I have experienced what I can only describe as the jitters through my body, and some levels of anxiety and waves of depression. Nothing as severe and prolonged as following my brain trauma so have used the same coping strategies for then, now and it helps a lot. I use Cognitive behavioural therapy approaches, walking meditations, and list off the successes of a day, even if it is a little thing. If I have a tough day I am now trying to control the sense of powerlessness by looking at what worked that day, what did not work well and what I can do differently tomorrow....That seems to help re-focus the mind constructively.

Anyway, sorry this is so long but just wanted to share what is helping me to see if anything here may help you. Good luck and keep on keeping and and my biggest saving grace is the golden tule for me these days, "Be kind to myself", both physically, mentally and emotionally.