Weaning off pramipexole

[Loopylegs]

Has anyone had any success in using clonazapam to wean off pramipexole? I'm on 0.088mg of pramipexole the lowest dose for the past 6 months along with 600mg gabapentin, I'm noticing that I'm waking earlier with rls symptoms and I'm aware of augmentation so I'm reluctant to increase the pramipexole, my doctor has given me clonazapam to help wean off the pramipexole, has anyone had success doing this?

[danamias]

Hi there. Is pramipexole the same as ropinirole?

[Spurdog1 in reply to danamias]

Hi Danamias. I am told it is the same product, made by different companies

[LotteM in reply to Spurdog1]

Spurdog and danamias, it is not. Do read Ellise2's reply.

They are both dopamine agonists, so same class of meds, but pramipexole is much stronger.

[Spurdog1 in reply to LotteM]

Interesting, i'm quoting my neurologist a few days ago.

[LotteM in reply to Spurdog1]

Have a look at drugs.com or another reliable website about medicines. Drugs.com is US? I don't know the equivalent UK one. I am in The Netherlands, and I assume you will be able to read the Dutch one.

Maybe you misunderstood your neurologist? Same class of medicine is only slightly different from same medicine. But can be very important when you e.g swap between the two because of their different strengths.

[danamias in reply to Spurdog1]

Thanks for this. I can't answer your initial question but I do recognise some of the problems you are having. I am currently taking ropinirole and gabapentin with the hope of reducing and stopping ropinirole ie increasing the gabapentin dosage. The problem for me is that if I go beyond 600mg of gabapentin then I experience all sorts of side effects. So I'm a bit stuck. I do have a follow up appointment with my neurologist next week so I'll talk it through with him, although as we both know there is no silver bullet here. Sorry, this has become all about me but I guess it's always useful to swap experiences 🙂

[Spurdog1 in reply to danamias]

I think this is meant for Daminias. Maybe I have misunderstood my consultant, maybe I haven't. Maybe time will tell, or maybe Effindoe or Joolslg will straighten us out.

[Hidden in reply to Spurdog1]

Ropinerole the highest dose for RLS is 4mgs. Although because of augmentation the RLS experts recommend no higher than 1 or 2 mgs Pramipexole the highest dose for RLS is .75mgs although the RLS experts recommend no higher than .25mgs. so although both dopamine agonists the dosage is very different.

[Loopylegs in reply to danamias]

It's a dopamine agonist like pramipexole but not the same, I augmented on ropinerole after a short while then changed to pramipexole which worked great for 6 months now I'm augmenting on that so I need to come off it

[Bluepainter]

I will be interested in any reply. I’m weaning off ropinerole from .75. Managed to drop .25 in two stages with only withdrawal effects in the evening but yesterday dropped another.125 and had a disturbed night. My gp has only suggested co-codomol which I know will make constipation worse. I am on an increasing dose of Gabapeptin, 400 at present.

[SueJohnson in reply to Bluepainter]

There is no point in increasing the gabapentin until you are off the ropinirole since it won't have an effect until then.

[danamias in reply to SueJohnson]

Thanks for this Sue - I didn't know that. Nor apparently does my neurologist since he never mentioned this to me. I'll certainly be mentioning it to him next week!

[involuntarydancer in reply to Bluepainter]

My understanding is that, although (as Sue Johnson says) gabapentin will not help with symptoms while you are withdrawing from ropinerole, there is some point to starting it before discontinuing ropinerole as gabapentin can take a while to build up to its full effectiveness. I understood that this is why some neurologists suggest gradually increasing the dose of gabapentin during the ropinerole withdrawal phase. When the effects of the ropinerole are finally washed out of your symptoms, the gabapentin dose is up and running and ready to take over.

Unfortunately, there are many on here who can attest to the fact that gabapentin is often ineffective in treating RLS post augmentation even long after the dopamine agonist has been discontinued.

To address your symptoms while withdrawing from ropinerole, co-codomol will be much more effective - albeit that there can be unpleasant side effects - as you point out.

[Hidden]

Pramipexole and Ropinerole are not the same tablet both are dopamine agonists are similar in how they work. Pramipexole is the strongest tablet hence the dose is lower than the Ropinerole yo will see how different the dosage is in the two tabs.

[Bks429]

Just did it with some difficulty! I was on .25 mg of pramipexole with definite augmentation! At the same time I was taking 900 mg of gabapentin and clonazepam and medical marijuana! My new neurologist wanted me off the pramipexole and encouraged me to decrease the dose little by little. When I got down to a quarter of a tablet he laughed and said you can stop taking it - you’re taking so little, but I was terrified, and kept snipping off bits and then started taking it every other day, etc. Needless to say it has been almost 2 weeks of no pramipexole and I am sleeping fantastic. If I wake up with a slight feeling I take one of my THC tablets and that does the trick. ( still taking the gabapentin and clonazepam ) You can do it,!!!! But know the terror when you start decreasing and you feel the symptoms it’s like no, I cannot do this! He said, once I totally stopped, it could take up to 10 days of really exacerbated RLS, but I did not find that. Maybe decreasing so slowly was the reason? Trust me, I was snipping off bits with my fingernails so I think it took about five months to finally get off it!!!

[lorri214 in reply to Bks429]

hi, I am interested in trying medical marijuana. I have the marijuana mints from a friend. I dont know how many to take. I have taken two, but didnt notice much of a difference. I am afraid to take too many since I take oxycodone and pramapexole. what type of marijuana do you take and is it effective. I tried vaping but the smoke was choking me. My son took med. marijuana and his rls went away instantly.

[Bks429 in reply to lorri214]

I take Indicol THC I believe it’s 5 mg. The mints really didn’t do anything they are just CBD. My old neurologist had me oxy as well but that made me feel horrible so I no longer take that.

[Loopylegs in reply to Bks429]

Thanks for the advice

[involuntarydancer in reply to Bks429]

Well done for getting off it, Bks. It's great to hear of people who managed it without the severe response so many record. It really does seem to be a less traumatic process for people who reduce by the tiny increments that you describe - chipping with fingernails!

[rfcplms]

Don't like the Clonaz, walking around in a mental bubble fog all day. How about CBD oil?

[involuntarydancer]

Hi Loopylegs,

I'm very sorry to see that pramipexole worked for such a short time for you before augmentation recurred. I don't have experience of clonazapam but have seen reports of individuals finding it useful in treating their rls and there is a section in the seminal medical textbook by Drs Allen, Buchfuhrer, Lee and Hening on the use of benzodiazepines for the treatment of RLS. I hope it helps.

I am not recommending this but mention it for your consideration because of your particular difficulties with apnea induced by opioids and your asthma; there is a poster on the US RLS forum who continues to find that naltrexone (which he was prescribed for a separate issue) had the effect of completely reversing the augmentation and impulse control disorder he was experiencing on pramipexole. This has enabled him to continue to use pramipexole to treat his rls. From memory he uses 25mg of naltrexone twice daily so this is not low dose naltrexone. He described himself as a large man so that dose might be too high for another individual (naltrexone can cause side effects). You can find his posts if you google bb.rls.org and search for 'aipulu'.

Re discontinuing pramipexole, I have noticed that - anecdotally - people who reduce the dose by very small amounts and take their time seem to have a much less severe response to the withdrawal than those who reduce more quickly (often following the advice of their medical advisors) and I would suggest using the method used by Bks429 in this thread of breaking the already tiny pramipexole pills into very small amount using a fingernail or even teeth.

Good luck!

[Loopylegs in reply to involuntarydancer]

Great advice! Much appreciated

[TeddiJ]

Hi. I came off years of Pramipexole and Ropinirole (I toggled between the two when augmentation started). I was able to do it with 7-10 mgs of Methadone a night. I tapered down from the DA's very quickly-probably over 2 weeks time or so, after reading various studies by Dr. B and Johns Hopkins. It was not hard at all with the Methadone. It has a few side effects but works very well and immediately-unlike other options like Gabapentin, etc.

But, now I have the issue of how to get off the Methadone and/or what to take next. Dr. B says to just continue on an opioid. But, I had a terrible night of withdrawal from the Methadone after only being on it for 2 months. My current doctor doesn't want me on it long term.

I guess I traded one hell for another? I just don't know anymore!

Please see the very long post I just wrote tonight in reply to Steino from 7 days ago (question about managing side effects of methadone and clonazapam), if interested in the details.

Best of luck to All!

[Loopylegs]

I'm afraid I augmented on opioids too, I'm in Ireland where there's not a chance of being offered methadone full stop, and to be honest I personally wouldn't take it if offered as I'm sure I'd be like you trading one hell for another! I tried the clonazepam and didn't like the side effects so at the moment I'm trying to reduce the pramipexole and hope for the best, I appreciate the advice and I hope you manage to get off the methadone x

[TeddiJ]

Thank you and all true. It has been hard for me to get the methadone prescribed but I finally have a doctor who will prescribe it for the short term.

For now, I am glad I am off of the PRAM and ROP completely and that seems like a big win. Even though I do have to worry about the Meth withdrawal at some point.

My plan right now is to let my brain settle after many years on those DA drugs and hopefully some of the natural solutions will start to work for me.

Some people on this forum say it takes a year to really get over the DA withdrawal. One person suggested adding Berberine to help the receptors get back. If they even can!

Thank you and good luck!