Staying on low dose of pramipexole

[Cather]

I was on pramipexole, .50 and occasionally higher dose, for 20 years. When the .50 started to become ineffective, and my doctor refused to give me a higher dose, I weaned myself off , taking from December 2019 to February 2020 and using no other medication. In Sept. 2020, I went back on pramipexole at .125. I have been on this dose ever since - by taking, every 4 to 5 months, 14 day "drug holidays" ever since. The drug holidays are torture, so I don't know how long I can keep this up. Any suggestions that would help? I don't want to go on other drugs.

[67Waterman]

Oh you poor thing.

I am sure others will reply with answers or suggestions, but I just wanted to say how much I empathise with you. I have been on Ropinirole for 17 years ... such a miracle drug if it did not cause augmentation! I have (just) weaned myself off of Ropinirole, and have gone on to Gabapentin, but I just have no faith in it working to be honest, as I am "shuffling" a good 2 to 4 hours every night (and going "bananas" most times).

If it does not work, then I think my only option (apart from going back on Ropinirole and, like you and others, taking holidays to "reset") is to go on Buprenorphine, an extremely safe non-addictive partial mu-opioid receptor agonist, whose evidence shows you will never augment nor will the dose need increasing. My only problem with that is the fact that one should not drink alcohol with an opioid .... and unfortunately I do enjoy wine every night with dinner. All very frustrating.

Wishing you well and sending warm regards, Sally

[SueJohnson]

Why are you not interested in trying gabapentin?

[Cather in reply to SueJohnson]

Sue, I have lost all trust in meds for rls. I was on Permax until researchers found that it could cause heart valve damage; pramipexole can cause damage to dopomine receptors, etc. I would rather stay with the devil I know (low dose of pramipexole) than start with a devil I don't know.

[SueJohnson in reply to Cather]

Your choice obviously, but do yourself a favor and research gabapendin. I don't think you will find any devil to worry about and no drug holidays needed. Have you checked out the Mayo clinic Updated Guidelines on RLS at Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked?

[LoisTonya in reply to Cather]

I am on 2 Pramipexole of .088mg and it does a good job of controlling my restless legs but I do worry about what it’s doing to my brain. I did suggest to my doctor that I should try Gabapentin but she said that is only a pain killer.I think I might have side effects to the Pramipexole - paranoia. That’s just not me at all. Perhaps it’s just the difficult times we’re living through

[Cather in reply to LoisTonya]

Lois, we seem to be having a similar experience. But my paranoia did disappear after I reduced my pramipexole dose from .50 to .125. I was on the higher dose for about 20 years before augmentation set in. I have now been on the .125 for 3 years - anxiety and paranoia are gone, but I have to take drug holidays of 14 or so days ever 4 or 5 months. I've resisted switching to an opiod or pain killer.

[Hidden in reply to LoisTonya]

Your doctor is wrong saying Gabapentin is a pain killer. , and if it was pain killers actually work for most people for their RLS.

[HilsK]

Hi Cather

Wow its a story we hear here so often. You have done so well to wean yourself off the highest dose of Pramipexole and even that I find is hell. My consultant suggested a drugs holiday and he has been titrating Gabapentin against the Pramipexole as I reduced the dose. I find Gabapentin (Horizant in USA) adequate but he also added Carbamazepine (Tegretol) which is a drug used for epilepsy which seemed to help. I am down to 0.088mg twice a day but the augmentation effects are not controlled and it is torture as you say.

I am actually still NOT 'off' Pramiopexole as I have been very ill indeed with Covid. They put me on all sorts of meds which I am also trying to wean myself off. What's more, as both my GP and Consultant are now 'unavailable' to help me in this because of their supposed Covid Duties I have no one to support me on the drug front as everyone at the surgery knows diddley squat about RLS etc.

I'm sorry I have no other suggestions for drugless solutions. I've tried everything but am unable to resolve the problem .... I do hope you find some way to help yourself .. please let us know if you do.

Best wishes Hils

[TeddiJ]

Hi. I used to toggle between Pram and Ropinirole; when I augmented on one, I then took the other. It worked immediately each time I augmented.I finally got off of both DA's with an opioid (Methadone); it was an easy transition and the opioids work for everyone. The trick is just finding the right doctor!