Tapering off Pramipexol - can anyone help?

[Gibbel]

I am in the process of tapering off Pramipexol after many years of use and now with bad augmentation as a result (I am 83 years old).

I am down to 3 tbl. a`0.088 mg from the dose of 0.7 mg. Gets a small dose of morphine – Malfin 10 mg depot (contains 7.5 mg morphine) to help.

Until now it has taken me 3 months and without much sleep to get down to where I am now – constant restlessness in my legs and feet especially in the middle hours of the night. Is chronically sleep deprived. Every time I try to take a small bite out of a tablet, a night without sleep follows. It hurts and stings and burns - like I have a nest of wasps in each leg and down into my feet.

The plan is for me to switch to Pregabalin. And I thought, maybe just as quietly to start here. I have tried that - first 75mg for 1 week and the following week with 150 mg (a few hours before bedtime). and still with the 3 tbl. Pramipexole (minus a small bite) and the one morphine. Then I couldn't take it anymore - what happens when I also take Pregabalin is that the symptoms worsen to the point of being completely unbearable. And not just in the legs and feet, but also a little in the arms and up one side of the jaw.

Recently, I have now tried taking the 3 Pramipexol minus a small bite - and then taking 2 tbl. Malfin (i.e. 15 mg morphine) a few hours before bedtime. No Pregabalin! Then I can actually go to bed without having to stretch and massage for hours before. And I get a full 5 hours of sleep in one go! BUT - during the day I'm so groggy that I don't actually improve my quality of life.

What do I do - I have to see my doctor on Friday and she is no more knowledgeable about augmentation treatment than I am! But maybe she will listen if I have good arguments? But she certainly expects that I have stepped down completely and don't need morphine anymore! Opiods are not given at the doors with her !

HAVE been to a neurologist - "You can just swipe right over" from 0.7 mg Pramipexole to 75 - 150 mg Pregabalin - I had a week like in purgatory. The worst week of my life. Then I gave up.

Gabapentin? I tried 5 years ago for 3 weeks. Was completely ineffective. And yes, take iron every other night!

Would be SO grateful for some advice!

Gibble.

[SueJohnson]

First rather than taking a bite out of the tablet I would get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

Second pregabalin wouldn't cause the symptoms you mentioned when you took it. And it is too soon to start it anyway. You would start it 3 weeks before you are off pramipexole and you are a long ways still from that. Even at the normal reduction schedule which is obviously too much for you it would be 12 weeks before you are off it.

Since you think pregabalin caused those symptoms, instead you might want to use gabapentin. It may not have helped before because you didn't take enough or were still on pramipexole. And at 3 weeks it was just becoming effective. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

The morphine isn't helping because it is below the starting dose for RLS which is 10 to 15 mg and the usual effective dose according to the Mayo Algorithm is 15 to 45 mg. Print out the section of the Mayo Algorithm on opioids to show to your doctor Https://mayoclinicproceedings.org/a...

Drowsiness the next day is a side effect of opioids but give it some time to go away. If it doesn't you can ask for a prescription for adderal or ritalin and take it in the morning when you get up and it should wear off by evening.

[Gibbel in reply to SueJohnson]

Dear Sue.

I am SO grateful for your detailed answer! Will take it to my doctor along with the Mayo Clinic Updated Algorithm. You have given me back hope!! Thank you very much !

Gibbel

[welschrispy]

Dear Gibbel,

I am in total support of Sue's recommendations. I owe my life to Sue and to several other wonderful people on this web site. I can't offer much medical advice but I was taking 12 times the max permitted dose of Pramepexole by the time I found this Web site.

This web site and all the other medical know how does not recommend cold turkey of this fishy drug but I had been trying to cut down for years. I got stuck at 1mg Pramipexole and I was actually so sick of splitting pills that I went against all advice and went cold Turkey. This is not a recommended course of action but I had had enough.

The first few weeks were horrible with no proper sleep, long walks in the moonlight and occasional collapse into unconsciousness.This lasted for about 3 months.

I took 4 mg tramadol to lesson my symptoms but it was no fun at all. I also took pregabalin and gabapentin but I don't notice much effect.

However you may have heard it said that we are adaptable creatures and I just got used to being in hell.

I now take 50mg Tramadol and 225mg gabapentin. I still get a bit of RLS but nothing like when I was on Premipexole. The RLS then was so strong it could throw me out of bed and half way across the room. Now that I am off Pramipexol it's no more that an an occasional and very minor irritation.

So this is a long way of saying that you can do it!I do not recommend cold turkey. I was at the end of my rope.

Contact me if you need my support

Very best wishes and good luck,You can do it!

Chris

[SueJohnson in reply to welschrispy]

My laugh for the day as I visualize "it could throw me out of bed and half way across the room." although it was no laughing matter for you at the time.😀

[BTABKWJ4561]

Iam 80 been ok with pramaprexal for a number of years sorry to read your having issues

[Suesh]

I was on 1.5mg Pramipexole for 12 years. It gave me around 4 hours sleep a night, but I had to get off it because the side effect of compulsive spending was ruining me (I didn’t buy a helicopter thank goodness but I changed houses 7 times and I have more jewellery than I will ever be able to wear). I used .375mg x 3 to start with (one every 8 hours) then 2 (1 every 12 hours) then 1 a day. I decided to do it quickly so each change was just 3 days. I then switched to Pregabalin 75mg the next day (so no break). I started with one a day for 10 days and am now on 2 a day. It’s only been a few weeks but I’m amazed at the results. I have to stay away from any alcohol (even just one glass) as it stops the effects of Pregabalin. Hoping I don’t get used to it as I’m feeling like a new person! I am also happy to report that the compulsive spending just vanished! I am a great believer in using just one drug - it leaves a clear path for it to do its work - sort of like a fish swimming upstream without having to get through barriers before it reaches its destination, if that makes sense? Anyway, that’s my story - I hope it helps…

[Jules1953]

I am so sorry to read how you are suffering with augmentation. I also suffered with horrendous augmentation when I was at the final stages of weaning off Sifrol (pramipexole). The only thing that got me through the final weeks was taking 5mg of oxycodone. I now use Temgesic. I place 2 sublingual tablets under my tongue before bed. Temgesic is a low dosage of Buprenorphine. I have tried Gabapentin but it does not work for me in controlling my RLS.

I was on Pramipexole for about 12 years and my doctors just increased the dosage whenever I told them it was no longer effective. I did not know any better until finding this group. And until in 2018 when a pharmacist questioned why I was taking 3.00mg of Pramipexole. I was unaware that I was taking 6 times the recommended dosage . Now pramipexole is not recommended.

During those 12 years I put on 30klgms , had a food and shopping addiction.

I now see a sleep specialist here in Perth, Western Australia Dr Richard Warren, who is up to date with treating RLS. He attends seminars overseas with the top specialists.

He prescribes Temgesic for me as my GP will not prescribe for me and most Doctors here in Australia do not know anything about RLS.

I wish you all the best as I know the hell you are going through. Kind regards Julie

[Cowbsky]

Hi, Gibbel,

_ no advice downhere...just to make you know on my five decades with RLS

_ for some decades, not continuous though, I have been using clonazepam (never more than 0.6mg) and other benzo's, one each time, to manage my RLS...these days I am on 0.4 mg of it...wonderful drug for me. Saved my life and career.

_ Clonazepam are not to stop RLS , rather just relax and put you back sleep during night repeated wake ups.....40 hr half life it would be a upside of the drug on my opinion......

_ PREGABALIN: some five year ago doctor put me on this drug, maximum 100mg.. ...went on it for some 2 months....bad experience! muech worse than the clonazepam in the end....and unbereable side effects: strong constipation, gases, pretty much no drive to sex, dizzyness, legs trembling, an so on...never more, thanks.

_ today I have managed my RLS, and other things, very well by a combination of : 0.4 mg of clonazepam + 50 mg of lamotrigine (about to stop this, mayve) + EFT (emotion, physical free technique, EFT Dawson Church'a manual) + Daily Energy Routine (Donna Eden's orientations)

all the best

Marcio