Mirapex/pramipexole withdrawal

[tagaxel]

Can you withdraw safely from Mirapex/pramipexole?

[Madlegs1]

That quote is a bit over the top.

It is correct that it is difficult to get of Pramipexol, but certainly not impossible.

You go down by the smallest increments- usually by 0.088 every week or so. The pills can be cut to make smaller doses.

The longer you've been on Prami, the harder it is.

Let your body guide you, have rests when it gets too difficult.

Most people find opioids are necessary near the end, but some people don't need them.

I had no problems after being on Prami for 9 months.

There is plenty of advice on this site (search). And on posts displayed on this page.

Good luck.

[tagaxel in reply to Madlegs1]

It wasn't a quote. Some people go through withdrawal symptoms akin to heroin or cocaine withdrawal. If you want to avoid that kind of situation you can make use of a compounding pharmacist. For example I started at 0.75 mg. On the first night I took 0.7483 mg; on the second night 0.7467 mg; on the third night 0.45 mg. I actually used a liquid form of Mirapex/pramipexole created by a compounding pharmacist. Some people have had such bad withdrawal symptoms that their physician has put them on opioids! All I'm saying is if you want to get off the stuff without any pain you have to micro taper. But it is entirely your decision of course.

[BJamn]

I found out how rough this stuff is when I went on a camping trip and forgot my pram. WORST NIGHT OF.MY.LIFE. Restless Legs, Restless Arms, Restless Chest. The next day I drove all the way out of the wilderness called my home pharmacy and had them forward my prescription to a pharmacy I could get to. At this point I knew I had to get off it. My ignorant sleep doc had doubled my dose so it was rough. I slowly tapered it off ending up with a few weeks of .88 (I think). I also bridged it with gabapentin which I now take in the evenings (about 600 mg. spaced out over 6 hours or so). I also took Ambien to help me sleep. After I had withdrawn from pram I quit the Ambien which isn't so hard. I sleep pretty well most nights unless there is stress. Stress sucks.

[sylvanwanderer]

I question whether treatment with opioids is insane. I went through literal torture when I augmented on pramipexole. I was on .5 mg, and that had worked for about six years. When I started augmentation, I quit cold turkey, so you can imagine what that was like. I'm not sure tapering would have helped, though, because any amount of prami made it even worse. Tramadol doesn't help. Lyrica (pregabalin) doesn't help. I refuse to take gabapentin, because of my previous experience with it. I was taking it for myofascial pain syndrome following C6-C7 fusion surgery, and I lost not only my short-term memory, but my long-term memory. Our youngest son passed away at 16 after a three-year battle with bone cancer. Because of gabapentin, I have no recollection of almost two years of his life (3-4 years old.) So. Not going there.

I resisted going to opioids strenuously. I hate the things. However, I am currently on hydrocodone 15, which gets me about four hours sleep, after which I take a supplement called "Rested Legs" which might get me two more. This, after six months of less than three hours of interrupted sleep a night. I have an appointment in March at a University movement disorders clinic, but I doubt that they have anything else to offer medically.

I have some severe disc degeneration and multiple perineural cysts, with spasm in my left hip and nerve pain all the way down my left leg. I was able to experience one session with a Maitland trained physical therapist (OZPT) out of state, and he reversed the trend of increasing disability in that one session by mobilizing my spine. (That's the very short version of what the treatment involves.) It not only improved my pain and mobility issues but also my RLS symptoms. (It seems that there is a feedback loop between pressure receptors in the facet joints, nerves supplying the intervertebral discs, and the musculature surrounding the vertebral joints that affects/disrupts normal neural impulses and initiates or exacerbates RLS.) That was over a month ago, and I am just now falling back in to the pain/disability cycle.

I am unable to find a Maitland trained PT in my area, but I'm calling one 2.5 hours away today to see if he can treat me. If it helps my RLS, I will certainly let you know! In the meantime, I think it's misinformed to call treatment with opioids insane. Insane is where I was going without them. I do appreciate the conversation, though, and I agree that it's not a "go-to" treatment but something that needs to be subject to serious risk vs. benefit analysis.

[rls-insomniac]

I have severe refractory RLS. I am convinced after being prescribed ropinirole (a different DA but a DA nonetheless) at a crazy high dose has permanently damaged my dopamine receptors. I am currently taking an opioid to manage my symptoms. Without it I'd be stuffed. Some of us have little or no choice but to resort to using a low dose opioid because nothing else has worked. Without them, I think I would have gone insane.

[tagaxel in reply to rls-insomniac]

Are you taking the opioid to manage your RLS symptoms or your ropinirole withdrawal symptoms? You can withdraw from ropinirole also by using a compounding pharmacist and you can control your RLS symptoms by using Horizant. I am just suggesting that people can head off the use of an opioid by treating their RLS symptoms with Horizant and micro tapering from the dopamine agonist.

[rls-insomniac in reply to tagaxel]

I am no longer taking ropinirole having weaned off it some 18 months ago. It was possibly the most traumatic experience I ever had to go through. It took me over a year. I've tried just about all of the medication available including pregabalin which is a form of Horizat. Buprenorphine/Temgesic is what I'm taking now to manage my symptoms. I'm well versed in what medication can be taken to treat RLS symptoms. Taking a low dose opioid is the last resort of treatment for me. My symptoms were so severe that nothing seemed to work for me other than Temgesic. With this I get about 75% relief but sometimes still suffer during the evenings and at night, but it's manageable. There are numerous other people who can manage their symptoms with non opioid medication. Unfortunately I'm not one of them. What works for one person doesn't necessarily work for another. We are all different. Those of us who take a low dose opioid have to because nothing else has worked.

[Joolsg in reply to tagaxel]

Most of us were put on pregabalin after withdrawal from Ropinirole/Pramipexole. However the Alpha2Delta ligands do not work for everyone. Dr. Buchfuhrer believes it's because the dopamine agonists permanently damage some people's receptors.Our only choice is then 24/7 severe RLS or low dose opioids.

Dr. Winkelman's Massachussetts opioid study shows the dose stays low & doesn't cause addiction. We are dependent, but so are RLS patients on dopaminergic drugs and the Alpha2Delta ligands.

As others have said, we are all different and what works for one doesn't work for another. Otherwise we could all just take a magnesium pill at night and be completely RLS free.

I'm delighted you've found a way to microdose the Pramipexole and I hope it means you get no more withdrawal symptoms.

Let us know how it goes.

[RLSofManyYears]

Well I've suffered augmentation with both Ropinirole and Pramipexole. It took me a year to ramp down from 4mg Ropinirole to zero, but I made it. I then went on to the Pramipexole but at a much lower equivalent dose. After a couple of weeks of sleepless nights I was able to come off that as well (despite the warnings in the introduction). I am currently on 300 mg Pregabalin and 400 ugm Temgesic. The Temgesic allowed me to finally sleep right through the night for about 9 months but now I'm now getting any sleep until between 2 - 4am. Re compounding pharmacists, here in the UK our medications are provided via the NHS and I think we would have to mail-order for what you suggest. I've found that my incisors work very well in cutting up a tablet!

[tagaxel in reply to RLSofManyYears]

I don’t know how pramipexole tablets or calibrated in the UK. In the US they are calibrated in milligrams. So let’s say you are taking what is considered to be the maximum dose of pramipexole for RLS. In the US that will be 0.5 mg of pramipexole. I’m not talking about simply cutting a pill. I’m talking about a micro taper in which you will trick the brain into not missing the drug.

I tried to taper from pramipexole the way you are supposed to do. When I tried to go from 0.375 mg down to 0.25 mg I went to hell! The smallest US dose is 0.125 mg. You might be able to get down from 0.5 mg to 0.375 mg but after that you are looking at some serious pain.

What you can do is have your physician write a script for a compounding pharmacy. There are lots of compounding pharmacies in the UK (I googled it). You would have your physician write a script using 0.125 mg tablets or whatever the UK equivalent is, setting that amount equal to a 15 mL suspension. The compounding pharmacist would dispense 450 mL. (You would need to deliver 30 of the tablets to the compounding pharmacist for a month supply.) You would remove 0.1 mL per day which translates into a loss of 0.00083333 mg per day or 0.025 mg per month! The idea is to trick the brain into not missing the drug. People have used this technique for the last 10 or more years to get off drugs like Valium or other benzodiazepines.

[jollyjune]

I am now really confused, I am a 83 year old female who has been taking Ropinirole for 6 years and am now augmenting on 2mg. I did last year get down to 1 mg but was not able to get a supply of 0.25 (quarter mg) to continue to reduce and ended up back on 2 mg.Last week my pharmacy gave me Risperidone ????? instead of my usual ropinirole ??? is this safe?

I am not getting any sleep unless I take two painkillers (solpadeine max) the next day is awful.

I managed to get a telephone appointment with a doctor from our surgery who has prescribed Gabapentin 100mg. Shall I take these and how many. I am continuing to reduce the Ropinirole and am about to start 1.50mg. My ferritin is 70.

Any suggestions would be appreciated.

[RLSofManyYears in reply to jollyjune]

I think your pharmacy must have made a mistake as Risperidone is a totally different medication and is not used for RLS. You can get 0.25mg tablets of Ropinirole (it's the Starter Pack) and pharmacies like Boots and Well will have them. Reduce the Ropinirole by 0.25mg every 2-3 weeks or as much as you can manage. The final reduction will be the hardest and you may need some other medication to get you through this. The alternatives are either Gabapentin or Pregabalin and as you are on Gabapentin then you should stick with that. I think 100mg is a low dose and it can go higher, although I could not say what the does could be for you. I hope this helps.

[tagaxel in reply to jollyjune]

The FDA warned of potentially dangerous medication errors involving two drugs with similar-appearing names: risperidone (Risperdal), an antipsychotic, and ropinirole (Requip), a dopamine agonist used to treat Parkinson disease and restless legs syndrome. The two products also have labels that look similar (see photos in linked Drug Safety Communication).

[Bairnie in reply to jollyjune]

I was on 2mg Ropinerole for 6 years and was augmenting. I decided to come off cold turkey. I felt gradual reduction would just make a hellish process even longer. It was grim but after 11 days of no drugs, I started Gabapentin. That took a couple of weeks to build the dosage. Then it was a few months to get my sleep pattern on to a more even keel. I hope you manage to get off the awful DA. It is worth it.

[jollyjune]

where is the drug safety communication please