Mirapexin: I'm embarrassed to say but I... - Restless Legs Syn...

Restless Legs Syndrome

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Mirapexin

Memmy profile image
13 Replies

I'm embarrassed to say but I'm back on mirapexin after months of coming off it. I know it's wrong but I'm feeling human again. I know I will augment but I hope that maybe the new DA will be ready soon. I took 0.09mgs for 7days plus 100mgs pregabalin. Ive slept all night like a long. No Kratom, extra codeine, coffee in the middle of the night and walking around. This week I'm back on the preg and 50gr tramadol. I'll take it for 7days. Then I will alternate. I had no withdrawal symptoms at all. I'm not recommending this to anyone. It's my personal choice and when I augment I'll have to deal with it. The pregabalin on its own did nothing for me. I reached 400mgs a day. It made me feel like a zombie. I couldn't concentrate so thats when I slowly reduced it. Let's see how long I can carry on like this. There is no way my neurologist will prescribe anything besides what I'm now taking. The tramadol is prescribed by my orthopaedic doctor for rotator cuff pain. My neuro won't even give me that . I have tried showing her the Mayo clinic but she says she has to follow the protocol here in Greece and only DA's and gabapentin or pregabalin are allowed. I'll keep you informed

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Memmy profile image
Memmy
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13 Replies
m1946 profile image
m1946

Hello MemmyThought I would add that I am also 'self prescribed' and after convincing my GP (UK) now taking 150mg of Tramadol which is giving me 8 hours sleep every night. I have experience of a DA ROPINIROLE and after augmenting and the withdrawal effects now just taking the Tramadol. However I am wondering if you have had your brain iron levels tested?

LotteM profile image
LotteM

Hi Memmy, I am very happy for you that you are sleeping and have made your own choice.

But first: NEVER be embarrassed and DON'T think this is wrong. You are the only one to make decisions about your health and treatment (together with your doctor if needed). Although DAs are no longer first line of choice, they still have an important place in the treatment. The tendency on this forum is to warn people off and to advice to not to take them at all. But they are or can be hugely effective. Your current approach seems a wise one. By alternating weekly you may increase the length of use of the pramipexole markedly. Also, by combining several meds, tue dose of each one can be kept lower, reducing the chance and severity of side effects, including augmentation.

And, you know the signs and know what not to do when the first signs of augmentation occur.

Again, I am so happy for you that you sleep again. That in itself may help to reduce the RLS symptoms. I know mine get worse when I am (over)tired. I hope it lasts!

Memmy profile image
Memmy in reply toLotteM

Thanks, you make me feel better

67Waterman profile image
67Waterman in reply toLotteM

Thank you Lotte for saying all that .... it's so difficult when everyone says that one cannot take Ropinirole, but in all honesty, that is the only drug that really does actually work. I don't rely on it anymore, but I do take it in a very small dose to supplement Gabapentin, which, on its own, is just not effective enough. A hug to say a big thank you.

lee_uk profile image
lee_uk

That’s interesting about mixing the meds I’ve never considered that. I’m curious as to ‘know what not to do when the first signs of augmentation occur’ what should I not do ? I’m guessing increase the dose?

LotteM profile image
LotteM in reply tolee_uk

That is exactly what NOT to do. Bu increasing the dose you step on a treadmill and things will only get worse as most likely these signs of augmentation and increasing of the dose will repeat itself.

The trick is to REDUCE the dose of ropinirole/pramipexole/Neupro and maybe add another medicine if the augmentation signs do not settle after a while. DAs can be combined, both with gabapentin or pregabalin and an opioid. I think (not completely sure) that this combination therapy is also mentioned in the update guideline in The Mayo Clinic Proceedings.

Memmy profile image
Memmy

I haven't felt so well in months. Lotte made me feel so much better and for the time being this mixture of pregabalin and mirapexin in very low doses and then another week of tramadol and preg again in very low doses seem to work for me. I know from experience how things can change and we should never be complacent with the dreaded leg. Of course no wine or sugar which are my triggers.

I resumed mirapexin about a year after withdrawal from a very high dose and augmentation. I keep the dose at 0.088mg and keep my iron levels high. I have to supplement with a small dose of temgesic (buprenorphine) and quite a lot of kratom. It is the best system I have tried and, like you describe, Memmy, I feel almost human and can live an almost normal life which was not possible on any other treatment regime.

I tried lots of options and in many combinations - pregabalin, ldn, dipyridamole, oxyconton, cannabis and all the many non-prescription suggestions. None worked so well. I have taking pramipexole at the same dose, for over 4 years now. Effectiveness has diminished over that time which is why I added in the temgesic and I do need quite a lot of kratom also. However, without the pramipexole I would have to take these drugs at a level that would make normal living very difficult.

Memmy profile image
Memmy

Good to hear from you I V dancer. I'm glad you are also controlling your RLS in this way. Do you alternate your meds and if so how do you do it. I've only just started with one week mirapexin and one week tramadol. However on the 4th day of tram it isn't 100percent effective so I may change that. The mirapexin days are great. I also take 100mgs pregabalin. I haven't needed Kratom since starting but I know it's early days. Thanks for the support

involuntarydancer profile image
involuntarydancer in reply toMemmy

I can't remember if I tried alternating. I used to take occasional breaks from mirapexin - using additional kratom during the breaks - of about 6 weeks in hopes of reducing the risk of augmentation. The breaks were torture and I found I went straight back to needing the same dose after the break without any apparent benefit so I haven't taken a break for about 2 years.

I will never increase the dose of mirapexin above what I'm taking now. I'm pretty sure the risk of augmentation increases with increased dose. I probably need to take a break from Kratom at the moment because I think it is reducing in effectiveness but I don't really have any alternative as a2d ligands (pregabalin/gabapentin) don't work for me and I can't tolerate opioids in high doses.

Memmy profile image
Memmy in reply toinvoluntarydancer

You've given me hope. Two years is a good length of time. Im finding that 4 days on tramadol is not good and I think I'm going back on Mirapexi tonight but I will alternate every 8 days

Memmy profile image
Memmy in reply toinvoluntarydancer

How much is your top limit for mirapexin. I'm on half a 0.18 so that 0.09 which is quite asmall dose

involuntarydancer profile image
involuntarydancer in reply toMemmy

Half of 0.18 is my top dose. I would never take more than that.

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