Coming off meds

[Memmy]

Hi all fellow sufferers. I take 0.09mg mirapexin, 235mg magnesium and 1/2 teaspoonful Kratom every evening. Once a week I take just tramadol. My rls is not completely ok but I manage it. I've had it for about 30 years. I daren't drink wine and keep my sugar consumption low. My question is can I stop having any dopamine or does my body need it. I've tried Lyrica but I put on sooo much weight so I stopped. I would love to stop taking mirapexin. Could I increase the Kratom.. Thank to you all. This site is a godsend

[Elffindoe]

Some thoughts that may help you decide for yourself.

One is that if you've been taking pramipexole for a while then you will be physiologically dependent on it. Pramipexole is renowned for the degree of dependency it causes.

So in one sense you do "need" it because if you don't take it you may experience withdrawal effects within 24 hours.

Two is that if is currently successfully helping relieve your RLS symptoms, then if you just stop taking it and do nothing else then your RLS will get worse. In that sense then you "need" it to treat your RLS.

Three, another question might be, do you need to stop taking it? If so why? If not then why stop, wanting and needing are not synonymous.

It is possible to wean off pramipexole despite the dependency, but it's only worthwhile if there's a strong reason for stopping AND you replace it with something else.

The usual replacement for pramipexole is pregabalin or gabapentin. If you can't take one of these then your next option would be an opioid. Tramadol is not a good replacement for pramioexole even if you took it every day. You would probably need a high potency opioid such as oxycodone, methadone or buprenorphine.

My suggestion is, if the pramipexole is working and not causing problems then, for now, keep taking it.

You should also consider, have you had blood tests for iron deficiency? Do you take any other medications that may be making your RLS worse?

[Memmy in reply to Elffindoe]

Thanks for the advice. You have been very helpful

[Quiltingmum in reply to Memmy]

Hi MemmyI agree with everything Elffindoe said. It’s perfect sense. I took Tramadol for a while as well as Ropinirole and it was not good coming off both. But if taking Tramadol for one day is working that’s ok. I now take Pregabalin and hate the weight gain - just have no other options left, so have to try not to eat too much and live with it. Good luck.

[Dougg]

Memmy - One option would be to increase the kratom dose a little bit at a time to see if you get better results with a slightly higher dose. Keeping a journal or log could be helpful - such as date, time, dose, kratom type, and then notes about results.

[Memmy in reply to Dougg]

Thanks for the advice

[TheDoDahMan]

I found kratom to be very helpful for several months. But I did gradually develop a tolerance for it. But half a teaspoon equals about one gram, and I was taking 8 grams per dose, 4 times per day, before I finally found a doctor smart and courageous enough to prescribe me low-dose (5 grams, twice daily) methadone, which has completely controlled my RLS symptoms.

I never experienced untoward side effects with either the kratom or the methadone. So you're a long way off from taking a harmful dose of kratom, but be advised that, because of a growing tolerance, it is not a long-term solution. I've been on the methadone for about 3 years, without developing any tolerance to it, nor do I expect to, based on the long-term experience of others.

To be clear, once I was prescribed the low-dose methadone, I no longer had to use the kratom, and experienced no ill effects from quitting it.

[Memmy in reply to TheDoDahMan]

Glad to hear the methadone works. Was it a neurologist who prescribed it and in which country

[LanaCSR in reply to Memmy]

Kratom was VERY effective for me in not only controlling my RLS, but I was able to use it to get off of Requip. I had been on Requip for years and everybody said it was nearly impossible to get off of, but I was able to do so using a higher dose of Kratom. Kratom has been a godsend for me!

[Memmy in reply to LanaCSR]

That's great news. How much Kratom do you take and at what times. That gives me hope. Do you take anything else

[LanaCSR in reply to Memmy]

I take a teaspoon in a little bit of orange juice when my RLS starts to act up. It starts working almost immediately!

[TheDoDahMan in reply to Memmy]

The prescriber was Dr Buchfuhrer, who is actually a pulmonologist, but is a world-renowned specialist for the treatment of RLS: mayoclinicproceedings.org/a...

His office is in California, but patients from the entire country of the United States (and elsewhere?) see him for RLS help. I'm not sure that the UK has a practicianer comparable to him.

[Quiltingmum in reply to TheDoDahMan]

Here in U.K. we cannot get Methadone prescribed. From what I have read on this site folks taking it get relief from symptoms and no side effects. It strikes me as weird that here you can get Methadone to help if you are a heroin or cocaine addict but not in small doses to relieve what is a lifelong debilitating syndrome like RLS.

[TheDoDahMan in reply to Quiltingmum]

If you'd replace the word "weird" with "hideous", I would agree with you even more. My only suggestion is that if every RLS sufferer in the UK who would be eligible for low-dose methadone therapy would march, clamor, and pitch a fit to your medical authorities, perhaps then they would wake up to the horrendous disservice that their ignorant regulation is causing.

Even here in the US it's difficult to find a doctor knowledgeable and courageous enough to write this prescription. Even then, many pharmacies here will refuse to fill it because of the opioid panic that seems to be relentless.