Coming off pramipexole safely

[Enable]

Can anyone advise me the best way to come off pramipexole. I am taking 0.18mg once per evening. I have been on it for about 5 years and want to come off before augmentation starts kicking in. My gp is not a lot of use on rsl. Any help greatly appreciated.

[Doings]

Ive just come off it but really slowly. I was on it 25 years. No doctor ever tested iron or told me about augmentation or side affects - nothing. They just increased the dose as rls got worse. It was finding this Forum that helped me 100%. I was able to tell my new GP about it (he didnt know anything). I reduced by half a 0.088 tablet a day every 2 weeks. I bought a tablet cutter from Amazon.

I was amazed almost immediately i reduced dosage that RLS calmed down, on a lesser dose every2 weeks so i was happy to make weaning very slow.

I asked GP for Pregabalin to take 3 weeks before final Pramipexole (all at suggestion from this Forum so i was not without any medication and to overlap). I did not find it as onerous as i thought it would be, yes a few bad nights but id had worse.

Now im on Pregabalin 50g x 2 a day and so far so good.

I also take iron every other day and magnesium.

Good luck its a long haul dont rush just reduce it one or two weeks at a time.

Good luck.

[Enable in reply to Doings]

Thank you so much , that's really helpful

[Joolsg in reply to Enable]

Please also write template letters for the RLS UK campaign to get RLS taught at med school and during GP training. The reason GPs can't help us is because they know nothing about RLS. We'll continue to receive poor treatment unless and until we get RLS included in the curriculum. See the pinned post.

[JayPea518 in reply to Doings]

Thanks for that info.. I have my Pregabalin tabs but was told I must stop the Pramipexole completely before I start the Pregabalin. So confused as this would mean abrupt withdrawal. Will follow the way you have cut down. It's obviously ok to overlap.....wrong info from my gp?

[Madlegs1]

Doings- has given excellent answer.Slow and small.

[Enable in reply to Madlegs1]

Thank you

[Kaarina Administrator]

Hi Enable,

This is the link Joolgs mentioned to you regarding the RLS-UK Campaign to get RLS taught at med school and during GP training. healthunlocked.com/rlsuk/po...

I have sent off two letters and will do the rest within the next few days.

[Hidden]

I would have suggested the same reduction schedule as Doings.

If withdrawals still get too much, you can either cut the reduction even further, or wait longer between reductions.

I got a pill cutter from Boots. They're great because I used a stanley knife at first and the cut halves pinged right across the bedroom floor. Amused my wife to see me crawling on all fours.

However, later I resorted to cutting them in quarters i.e. half of half a 0.088mg tab.

Then the pill cutter is no good because the B----y half pills don't stay in the right place. You have to hold the half pill between forefinger and thumb. Don't worry blood doesn't react with the drug.

First aid tip - if you cut a piece of finger off accidently, pack it in frozen peas and go directly to A&E, do not phone 111!

It seems your doc hasn't mentioned two other things that anybody with RLS should do.

1) have blood tests for serum iron, transferrin saturation and ferritin.

2) try and identify anything that might be making your RLS worse. There are a LOT.

Please forgive me for not writing more on these two, I seem to have written them several times today already. Please look at some of my other replies in other posts

see this link

cks.nice.org.uk/topics/rest...

[DerAusgewanderte]

I am in the same boat as you. About 5 years now since I am taking 0.125mg pramipexole every day. I have also been taking escitalopram (20mg) for about the same period for anxiety and as many here know that's a viscous combination, one basically chasing the other. It's clear that my primary physician had no idea - I don't blame her and I hope she uses my example as a way forward with other patients. After joining this forum it all became clear to me what's going on with my body and brain. Fantastic advice from folks like Manerva and Doings. I have started cutting pills in half and then to quarters for both and tried to get done within a month. I thought of doing one medication first and then the other later. Doing both with the idea of killing two birds with one stone....

I just started the last phase with 0 for both and oh boy, this is rough. I am glad somebody here posted the "schedule" from the RLS Facebook group. It started with no sleep for about 3 days until my body quit, with a subsequent few hours of sleep. I am on the second cycle (1.5 weeks without any of the two) and I think and it is getting better. Although I can't fully enjoy a good night of sleep, it is not driving me insane when lying down and I am dozing through the night. It also is a lot better during daytime now (my RLS moved to daytime over the last year and started to affect my arms as well).

I was afraid it would affect my mood, anxiety and depression but so far I am Okay. I do notice some effect on anxiety, but it's Okay. I am in contact with my primary physician

My thought was to wean off the two prescriptions and then start others. I asked my doc to do a blood test in a month or two without taking any supplements to check my "normal" levels.

For now the last 12 day phase (from the RLS FB post) matches pretty much what I am going through. I might have chosen a 2 month weaning off period if I had known it's this rough, but then - who knows, it could be the same result. If it doesn't get better in a couple weeks, I'll try Pregabalin as suggested by others.

Btw. it's great to have a dog during this phase. Unconditional love. While my wife asks me to sleep in another bed, he is by my side and senses my mood change and troubles. He also loves the walks at 3am in the morning, although somewhat confused....

Keep updating us. I will do the same.

One advice from others here is to stay safe, as your title suggests as well. After trying to drive to work with little sleep I quickly realized that I was putting myself and others in danger. My employer understands if I take sick leave. I asked my family to pay attention to to my behavior and alarm me when it might get out of hand for them.

cheers