Pramipexole 0.250mg as %100 RLS sympt... - Restless Legs Syn...

Restless Legs Syndrome

21,446 members15,122 posts

Pramipexole 0.250mg as %100 RLS symptoms fix

okank profile image
12 Replies

Hi,

To those that havent got to try the pramipexole I higly recommend with no side effects after using a year - using a small tablet 0.250 mg pramipexole after dinner. It never fails me. If I dont take it its a miserable night. So as in any pharmacutical drugs, its not a cure only make you not notice the painful symptoms and as you will later read comes with some cauition.

Also knowin that these dopamine agonistic medicines are believed to lead augmentation in the long run. IOW, the very medicine that managing the symptoms of RLS eventually make them worse/ From the reading of Pubmed; anectodal studies show that symptoms that usually run at rest ot night time as you well know spread to daytime with higher severity.

So I suggest to those of you on the Dopamine Agonists be mindful of the long term consequences.

Knowing this and Ive been only on this for a year. I began looking for alternative non drug therapies and after going thru some study, Ive come to Moleculer Medicine which is based on right molecule for right disease.

I read on the doctoryourself site taht there somewhere of an anecdote of success of Niacin and Vitamin C taken together at night has been an alternative solution.

I m about to try the vitamin C and Niacin therapy.

Also, a doctor I know has recommended to me rectal Ozon therapy as an alternative

I hope someone somewhere to find this useful.

Also Im open to suggestions of your RLS cure story or be interested to hear the non drug management/ sure.

Feel free to say what think or feel in response.

Thanks

Okan

Istanbul/Sydney

Written by
okank profile image
okank
To view profiles and participate in discussions please or .
Read more about...
12 Replies

Intriguing post. I will look forward to hearing of your results with molecular medicine.

Regarding pramipexole, I wish I had armed myself with as much information as you have when I was taking it previously. I merrily increased the dose every time it ceased to be effective until inevitably augmentation set in. However, I have to acknowledge that I got 10 years of fairly good coverage from mirapexin that way.

Since discontinuing mirapexin I have struggled to find anything that affords me the same level of relief.

If I had my time again, I would definitely use mirapexin, notwithstanding all I now know about it, but I would stick to the lowest dose (probably about half of what you are on currently) and take drug holidays maybe twice a year to re-set my receptors.

My understanding is that mirapexin is much less likely to cause augmentation if the dose is kept low. I would also concentrate on making sure my iron levels were maintained at the highest possible level by continually taking an iron supplement (I am one of the majority for whom raised iron levels help symptoms a lot). I would probably have used kratom to help with breakthrough symptoms - if I had known about it.

If I had followed those steps I might still be on mirapexin today (actually I am back on a tiny dose of mirapexin 0.044mg - but that is a whole other story).

Katerina22 profile image
Katerina22 in reply to involuntarydancer

I augmented on 0.09 of mirapexin after 3 years.I didnt know about augmentation then so i increased the dose until i had to go off pram.

LotteM profile image
LotteM

Interesting, Okan.

Do you know you can actoll through the Rls forum of HU to read accounts of others and discussion about all the different approaches and experiences? And, above all, there is a search function that helps you find threads that mention specific aspects, e.g. augementation, gabapentin, vitamin C, etc. Always combine the search keyword with ‘rls’ to get posts from the rls-forum.

LotteM profile image
LotteM

Oh, and welcome!

Shaft1952 profile image
Shaft1952

Very interesting I am on pramipexole and pregablin, I have only been on pramipexole a few months. I go for an iron infusion on Monday and hope it works as well as the one I had last year. Recently been searching the web for up to date research although not a lot this year yet. So glad things seem Good for you shaft1952

gijsvanleeuwen profile image
gijsvanleeuwen

I use pramipexol 8 years now. Startede with 1/2 of a 0.088 dose am now using 2× 0.088 s night. So indeed augmentation. Cutting chocolate coffee wine and most importantly suger and all fast carbs (search for glycemic index list ) helps a lot to stay free of symptoms at day time.

Parminter profile image
Parminter

Augmentation can manifest after one year of use, or more. Then, if you try to come off, there is the danger of DAWS, dopamine agonist withdrawal syndrome, which is a real and present danger. It can last for life. This is what I am afraid of. These days it seems that specialists are avoiding dopamine agonists, whereas Gps are using it wholesale and causing a plethora of problems down the line, some of which may be irreversible. Do not take this stuff lightly!

Casinogoer profile image
Casinogoer

Hi okank,

I have had RLS for well over35 years and have been on pramipexole for probably nine years. I started out with 0.05 mg with the same dose of clonazepam. Together they worked great. I have a very severe case of RLS. Then the break troughs started . I went to a doctor at Johns Hopkins who was the "TOP Doc for RLS". He wrote the books on it. He wanted me on methadone. That was a nightmare. Got off of it and went back to the pramipexole and the other drug with it. I had to use them both, the one wasn't enough to help. Well, then I had to increase the dose of the pramipexole to 1 mg. now that doesn't help. After awhile, your body gets used to it and it wants more. Then try coming off of it. That is a nightmare. My doctor wants me off of it and I am trying, but it is driving me crazy. No sleep and I feel like a truck hit me. And I just reduced it by 0.5 mg. Please let me know if any of these things work.

involuntarydancer profile image
involuntarydancer in reply to Casinogoer

Hi Casinogoer, 0.5mg is a big reduction if you did it all in one go. I would be inclined to go more gradually (at most half of .5mg - or even a quarter) to give your body a chance to get used to the reduced dose. Good luck.

Belsheart profile image
Belsheart in reply to Casinogoer

My doctor has me trying to come off mirapex next week. I'm scared. Have tried this before. Will start by taking lyrica (substituting that for gabapentin) and going to every other night on miripax for a week. Then every 2 nights. Also have low ferritin (38) and trying to address that.

Casinogoer profile image
Casinogoer in reply to Belsheart

If your ferritin is that low are they going to give you iron infusions? That is what I needed to get the ferritin levels up fast enough. Even with that, I still have RLS and a severe case even with the ferritin level way on the high side. I understand lyrica has it's own set of problems. Have you ever gone on the website ""Bad Drugs"? It is very enlightening. Good luck getting off Mirapex. I am on that journey and it is no fun. The RLS is really kicking up every night. The other side effects are bad too.

Belsheart profile image
Belsheart

I do need an infusion. I am first supposed to try another oral supplement. I hear you about lyrica. I'm hoping to use it for this transition and then get to the lowest amount i can tolerate. I have no idea what my rls baseline is at this point

You may also like...

Pramipexole RLS symptoms worse

started taking Pramipexole for RLS for the first night. Wow, didn’t know the symptoms would become...

Pramipexole, Mirtazapine and RLS

GP commenced Mirtazapine, night 1 & 2 really bad RLS so GP started Pramipexole 0.088mg. It worked...

RLS, Food and the wonder drug Pramipexol

brain and RLS a symptom of withdrawal. But I've often experience the opposite as well: I get an RLS...

Easing my RLS symptoms

contributing. Symptoms got worse but are better now that I'm back on and taking 2x/day. The symptom...

RLS & Pramipexole

woman. I have suffered with RLS for over 10 years. Prescribed .088mg Pramipexole by my GP n just...