No methadone: I’m stuck on pramipexole... - Restless Legs Syn...

Restless Legs Syndrome

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No methadone

tagaxel profile image
17 Replies

I’m stuck on pramipexole now. The first week at 2.5 mg of methadone wasn’t too bad but after one week at 5 mg the side effects were overwhelming. I talked to the Pdoc whose been handling my pramipexole taper and he said that my withdrawal symptoms to methadone were idiosyncratic and due to my kindled central nervous system. Now there is no way for me to get off pramipexole since the micro taper failed a few months back.

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tagaxel
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17 Replies
Joolsg profile image
Joolsg

Many, many people get off dopamine agonists without methadone or Buprenorphine to help.There are other meds. Most people reduce slowly and add gabapentin or pregabalin for the last month.

Why hasn't your doctor considered other options?

If he/she isn't familiar with RLS, they can use RLS Curbside to ask RLS experts for help.

rlscurbside.org/

tagaxel profile image
tagaxel in reply toJoolsg

Thanks Joolsg. I have spent three years micro tapering down from 0.875 mg of pramipexole down to 0.5275 mg but even though I am reducing at an infinitely small dose, withdrawal symptoms finally emerge causing me to have to increase the dose again. Horizant takes care of the RLS but I wanted to get off pramipexole because of the side effects of the higher dose. As long as you're above 0.5 mg you end up with "sleep disturbance" and "fatigue".

When I first tried to get off pramipexole three years ago, the idiot doc I was with back then wouldn't let me micro taper until I went into horrendous withdrawal. My kindled central nervous system makes this more difficult than it is for most people. I will be really messed up if Horizant ever stopped working. I'm just going to have to learn to live with the sleep disturbance and fatigue for the rest of my life.

Joolsg profile image
Joolsg in reply totagaxel

I have MS as well as RLS, so my central nervous system is severely damaged/scarred.You can't get off Pramipexole without withdrawal symptoms. And yes, they're hellish. I honestly thought I wouldn't make it through the brutal withdrawal. 2 weeks of all over RLS, violent leg & body jerks. No sleep. Etc.

But once through that 2 weeks, the RLS settles and each day is better than the next.

And then, the other drugs, like low dose methadone may completely cover your symptoms.

It's really tough, but if you are prepared and take time off and get family and friends in to look out for you, you can do it.

tagaxel profile image
tagaxel in reply toJoolsg

I spent seven hellish weeks in withdrawal three years ago that's why I decided to micro taper. The withdrawal syndrome that I experienced three years ago just wouldn't stop.

Joolsg profile image
Joolsg in reply totagaxel

I'm sorry to hear you had to go back on Pramipexole after getting off it.And I do hope the micro dosing works to get you off it again.

Good luck.

SleeplessinNC profile image
SleeplessinNC in reply toJoolsg

I had a similar experience and didn’t know HOW to taper at the time. It was hell, cold turkey. But after some time, things slowly leveled out. I didn’t know about methadone or long acting opioids when I went off prami. You can do it.

SueJohnson profile image
SueJohnson

What if you went back on 2.5 mg and stayed there? Or tried buprenorphine instead?

And Joolsg is right. You and many people can't avoid withdrawal symptoms.

tagaxel profile image
tagaxel in reply toSueJohnson

I went through severe withdrawal symptoms for seven weeks three years ago that's why I decided to try the micro taper. The taper worked to a point. I managed to get all the way down from 0.875 mg all the way down to 0.5275 mg. Then I began to go into withdrawal again. I may try the micro taper again in a few months after I redo the math. At this point it takes essentially five months to withdraw from 0.125 mg of pramipexole. I could change the math and make it take 10 months to eliminate 0.125 mg. If that works I could be pramipexole in around four years. My system just won't tolerate the opiate.

Going back to 2.5 mg of methadone, according to the neurologist, would not be sufficient to prevent the withdrawal syndrome. His plan was to take me up to 15 or 20 mg of methadone because he has other patients at that level. I was pretty much of a zombie on 2.5 mg but I was hoping it would improve over time. But the side effects were so outlandish after a week at 5 mg I decided I had to get off it right away or I would become addicted to yet another drug. I'm so beat up.

SueJohnson profile image
SueJohnson in reply totagaxel

I am so sorry!

Dotmowatee profile image
Dotmowatee

Could you try another opiate? I'm on Targinact with virtually no side effects. I'm also still trying to reduce Pramipexole but because I am coping do well I am still on a low dose. I don't want to rock the boat and I'm a bit of a coward.

tagaxel profile image
tagaxel in reply toDotmowatee

After methadone I have to admit I'm a little gun shy. Because of my kindled central nervous system I seem to have extraordinary reactions to anything that affects the CNS. I haven't spoken to the neurologist yet but I'm reluctant to try another opioid. I think I'll let things settle down a bit and then maybe in a few months I'll see if I can get down to at least 0.5 mg. But it looks like I'm going to be stuck on pramipexole for the rest of my life.

Dotmowatee profile image
Dotmowatee in reply totagaxel

I understand, everyone is different. This opiod works for me in conjunction with the pramipexole which I haven't got the nerve to stop. I'm not going to rock the boat. You have done well.

Peter000 profile image
Peter000

Hi, I was on Tramadol for years and I was able to quit cold turkey by using Kratom. Kratom is legal in most states in the US but not in in Australia where I live. It worked for me and my sister but not my brother. I would really like to hear more about people trying this. I just took the Kratom and stopped the tramadol and the RLS went away. I haven't been able to test it further because I can't buy it now and will need to wait until my next trip to Bali. Kratom has been recommended for people trying t ween off opioids and it has many other benefits; it even helps Tourette.

karjbee profile image
karjbee in reply toPeter000

I am not familiar with Kratom. Could you share your experience with it. I live in the states .

SueJohnson profile image
SueJohnson in reply tokarjbee

It is an herbal substance that can produce opioid- and stimulant-like effects and can control RLS for some. It's not legal in all states.

karjbee profile image
karjbee in reply toSueJohnson

Yes I looked it up, So dangerous , it's legal in California of course. Many states it is not. Found web sites where it can be bought. Wow , learn something new every day.

karjbee profile image
karjbee in reply toPeter000

I did look it up and it's interesting but does seem kind of dangerous. Anyway I did find websites that do sell it online. If that's helpful.

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