Reducing pramipexole

[RestlessMe]

Restless legs. I just thought I would record my experience so far. It might help someone else in the same situation, or others may have gone through it and have some hints for me.

I have almost cut out the sertraline. I think by the end of the week I will be free of it. Doing okay I think.

I have cut out half a pramipexole and due to cut out a second half of one this week. Currently I take a half on a Wednesday, so I thought I would cut a half out on the Saturday. Just to spread out the effects I guess.

I’m also taking a gentle iron tablet every other night, and also CBD gummy bears at bedtime.

I have noticed the following:

The days I don’t take the full pramipexole, my legs are really bad.

I am currently sleeping (last 4 nights) which I put down to the CBD. This is something unheard of and I hope it lasts

I wake up with an awful headache and I am incredibly grumpy until lunchtime.

I have an awful fog brain. Struggle to remember words and completely got a tangent. Hoping this will settle..

My toes crunch up without me realising it.

Despite sleeping, I am incredibly tired and ready for bed by about 9 o’clock

I guess it’s so far so good. But I am also whether it’s very early days and cutting down on the pramipexole and I’m not sure what to expect as I cut down more. My natural instinct is just throw them in the bin, but I have had enough on here to warn me that I need to do this slowly.

I have blood tests on Friday, full iron panel and I’m looking forward, and then I’ll sort of way, to the results.

I have not thought about what I will do when I have completely off the pramipexole. My aim at the moment is to see how I am without any drugs whatsoever, and then address the problem. Perhaps I am being naive?

Thanks for listening

[SueJohnson]

You are reducing the pramipexole too fast so are going to have increased symptoms. The usual recommendation is to reduce by .125 mg every 2 weeks or so. (You don't say what size pramipexole tablet you are taking) You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Yes you are probably being naive, but you certainly can try and see how you are without any medicine. The only problem is that by waiting to start gabapentin you will suffer longer since it takes 3 weeks to fully work and the usual recommendation is to start it 3 weeks before you are off pramipexole.

[RestlessMe in reply to SueJohnson]

Hi I am only on 0.088 mg of pramipexole. Another lady on here advised me to cut down by half a tablet every three weeks. I am going to cut down half a tablet every two weeks and see how it goes. Yes I’m impatient. But hoping because it’s such a low dose I will be ok??

I have read the Mayo Clinic advice. So I do know about gabapentin. I am aware that I may need to take it but I am so against any drugs, that I am aiming to be drug free. I am aware that I will probably need to reconsider.

One step at a time, or one half a tablet at a time!

Thanks for all your help and advice

[SueJohnson in reply to RestlessMe]

I misunderstood you and thought you were going to cut a half on Wednesday and again on Sunday.

[SueJohnson]

I just realized I never advised you about gabapentin which is now the first line treatment for RLS. You may already have gotten this information from the Mayo Clinic Algorithm, in which case, sorry to be repeating it. The beginning dose of gabapentin is usually 300 mg gabapentin. If you decide not to see what your symptoms are without any medicine, Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

[RestlessC]

Testing. (My last attempt, I wrote the whole thing but then when pressing “Reply” it wouldn’t work). Back soon (I hope)…

[RestlessC]

So, thanks for posting that. You seem to be on the same track as I am, though if I understand where you are with your meds, I’m way behind you - at .75 mg. Pramipexole after getting there from 1.5 mg. since Easter. I too would like to get entirely off everything, but my plans do involve transitioning to gabapentin and Tramadol when I get closer to the end, and see if it can be just temporarily. Though, even if permanently, I guess it would be better than continuing to take Pramipexole - or so I gather from all I have read here, and in the Mayo Clinic algorithm. You may however want to take a look at an RLS Foundation publication called “Medication withdrawal after Augmentation” which gives me pause! They describe the “Drug-tapering phase” at the bottom of page 1, and then on p.2, get into a day-by-day description of what they call “the 12 night, drug-free period” which sounds brutal. But, going back to the previous phase described on p.1, they say some things I really wonder about - ie. “…however, the most severe symptoms will occur when you finally stop the last dose of medication and begin a 12-night drug- free period. There are no medications that will counter the effects of the withdrawal…” and that “sedating medications are likely to make your RLS worse…” and so “therefore do not use any sedating medications during either…period”. (Not sure what “sedating” medications include, but I certainly intend to try transitioning to gabapentin and tramadol several weeks before going off everything and hoping they will work for me. But, it is pretty scary, jumping in with both feet, and hoping to accomplish the task at hand with so many unknowns. It is good to know we’re not alone though!

[RestlessMe in reply to RestlessC]

Hi, thanks for your reply. It is certainly good to know that we are not alone.

I will read the link you mentioned above.

I’m getting blood test tomorrow. Not sure what I expect from that but it will be good to know if my ferritin levels are correct or not.

It is so nice to be able to chat to people without having to try and describe the symptoms you are experiencing. Thank you and hope all goes well for you