Medication question

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
Slangis
Posts: 2
Joined: Sat May 20, 2023 11:04 pm

Medication question

Post by Slangis »

Thank you for the welcome. As my profile stated, I've suffered with RLS for over 2/3 of my life and at 73, it's at it's worst at this time.
It had been under good control with the use of Pramipexole and Clonazepam. My last doctor had increased the Pramipexole to .5 mg at 7 PM and
.75 mg at bedtime along with Clonazepam 1 mg. That protocol was keeping it under good control most nights. If I had a breakthrough night a little while in the hot tub helped. I also do have a prescription for an opioid that I'm reluctant to use. My doctor left the practice and my new doctor says that the dose of Pramipexole I was taking was actually considered an overdose and told me to stop the .5 mg dose at 7 PM which I did 3 nights ago.
It hasn't gone well. I had to take the Hydrocodone one night but have just suffered through the other two. My question is, has anyone else here taken the 1.25 mg split dose of Pramipexole or is my doctor right to have me discontinue the .5 mg?

Rustsmith
Moderator
Posts: 6516
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Medication question

Post by Rustsmith »

The FDA max recommended dose of pramipexole to treat RLS is 0.5mg, so your doctor is correct that you are even now taking too much.

For reasons that I won't go into, I was up to 1mg/night at one point and life was difficult. I was fortunate to find a doctor who was willing to switch me to methadone, which is what I have been taking ever since. Opioids work very well for RLS and the risk of true addiction is very low and only a few build tolerance over time that requires a dose increase. The primary problems are finding a doctor willing to prescribe them, the need to get prescriptions rewritten and filled every 30 days and the strange look from some pharmacists when they realize that this is not a one-time prescription.

In your case, at a daily dose of 1.25mg of pramipexole, you are almost certainly augmented and need to get off of it completely and not by switching to a different dopamine med (Requip or the Neupro patch). Take a look through our Augmentation forum to get an idea of the options that you have for stopping as well as those for managing your RLS after you have withdrawn from pramipexole.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
Moderator
Posts: 8823
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Medication question

Post by Polar Bear »

Just to add that I think the drop of .5mg pramipexole was rather a big drop all at once. You now need to wean off the pramipexole gradually and even at that it will be difficult, but well worth it. If I was in your position I'd be using the support of the opoid to help get through this.
Having very slowly weaned off a very high dose of Ropinerole (a similar drug to Gabapentin) I quite successfully use Cocodamol 30/500 and Pregabalin to help control my RLS and Neuropathy.
As suggested by Rustsmith please do read through the Augmentation Forum.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Slangis
Posts: 2
Joined: Sat May 20, 2023 11:04 pm

Re: Medication question

Post by Slangis »

Thank you both for the feedback. I thought dropping the .5 mg dose all at once wasn't a good idea as well. I just read through the Augmentation Forum which was helpful. I did suffer augmentation from Ropinerole years ago and went through some bad nights tapering off it. Unfortunately it seems to be difficult finding a doctor in my area who have a good understanding of RLS and also who are willing to prescribe opioids.

Rustsmith
Moderator
Posts: 6516
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Medication question

Post by Rustsmith »

Here are links to two publications that you will find very informative and if one of the doctors in your area is willing to learn, they can also be used as a guide to help you through this next step through your RLS journey. Both publications were prepared by some of the leading RLS experts in the US and are intended to educate physicians on the proper treatment of RLS. What some have done is highlight an appropriate section and hand it to their doctor with a comment like "I would like your opinion about what this document by the experts has to say about my situation". Do not say "I found this on the Internet" because that is an absolute turn-off for almost all physicians.

https://www.mayoclinicproceedings.org/a ... 0/fulltext

https://www.mayoclinicproceedings.org/a ... X/fulltext
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Post Reply