After ten years of Mirapex, I think I need something else!

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Anonymous

After ten years of Mirapex, I think I need something else!

Post by Anonymous »

Hi,

I am new to this site. I was diagnosed with RLS over ten years ago. I tried Klonopin and Sinemet and they did nothing for me. I have been on Mirapex for about ten years. I get it in 1MG tablets and take between 2 to 6 tablets each evening. I have had some side effects: nausea, sleepiness during the day, etc. I have also experienced things that MAY be side effects, such as nightmares and intense itching on my hands and feet. For the most part, though, I have felt the side effects were worth it to get rid of the pain from the RLS. If I miss even one night of the medication, I am up all night long, pacing and banging my legs against wooden furniture (coffee table mostly) because the pain from that is better than the pain of the RLS.

My problem now is that my legs seem to be getting worse. I used to be able to wait until at least dinnertime before they would be so jumpy and painful that I'd have to take the medication. Lately, they are jumpy all day long. I cannot take the Mirapex during the day because it makes me so sleepy I would not be able to do my job (teaching Kindergarten), drive, or function normally.

Because of changes in my insurance and having to move several times, I am completely out of touch with the neurologist that first gave me the Mirapex. I do have insurance now, but am having to start with my 'Primary Care Physician' and work my way up the insurance 'food chain' to a neurologist. Of course the PCP has to try everything he can before the insurance will let him pass me up the line. I am nervous about letting him take me off of the Mirapex and experiment with other things since my symptoms are so severe (to me at least! There are probably many of you with much worse!) .

I am writing with several questions:

1. Has anybody here been on Mirapex long-term and found it to decline in it's usefulness? What did you do?

2. Has anybody here been on Mirapex and made the jump to something that worked even better?

3. Does anybody have advice on easing the transition from one drug to another?

Thank you for reading my post and for any information you may have!

Cindy

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hi Cindy

Post by becat »

Hi Cindy and welcome to the board.
Thank you for teaching, it's a craft that often goes ignored. Gotta love a teacher. Yes, you need your rest and energy.
Sorry to hear about the insurance thing. Hate to see all that time wasted going up the chain. There is a pdf file I'll list below you might want to print off and take to the GP. If this doc doesn't know much about RLS is could be helpful.
THe RLS ALgorithm is the Mayo Clinic's gudie to diagnosis and treatments for RLS.
http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf

*******Please note, upper right hand box on this site type in RLS Algorithm to find the article. *********** sorry it's the only way I can find it, I'm sure there is an easier way. LOL

About your questions. I'll try to help and I'm sure that others will chime in as well. Everyone has a different path of treatments and their input is welcomed, I'm sure.

1. Yes, I used Miarpex for almost 3 yrs. It does well for many people, just built up in my system to fast. I was unable to tolerate a dose larger than 3mg. Your on a larger dose at 6mg max. That's alot in my opinion, I'm not a doc though. My doc had one person on 5 mg. Think Jan (great person here) was also on 5 mg..
I have RLS from both sides of my family, so it's a genetic gift. I just didn't like the fact that a higer dose would work for a month and then it would make me worse. It's call augmentation, meaning it comes on faster, or longer duration, and stronger. This could be why your having trouble during the day. There is a new thought that a lower dose is better. That raising the dose will produce more RLS problems. It's all a matter who you talk to. I think if you read around the board you'll have your answer. Again, some do very well with Miarpex, there are many that do not. And raising the dose may not be the best thing to do. Some even spread out the doses in a day, I understand this may be a problem for you to do.
2. I now use a combination I think works for me. I will be honest and tell you that everyone of us is just different. What works for me, may not for others. I am now on a pain med in the evening and a sleep aid. It works the greatest part of the time. I'm a bit stressed out right now, so it's not working A OK, but I'm tons better than last yr.. I don't take enough to be 100 % out of pain because I don't like how pain meds really make me feel. But at a low dose I can cut my symptoms and get really good relief. The sleep aid is just what I do. I didn't sleep for 8-9 yrs. so I dont' feel bad for using it. Sleeping through the night was a memory til last Sept. and I have to say when I can do it now, it's a joy.
3. I quit my Mirapex by accident and cold turkey. I do not recommend that you do this. I had headaches and just general didn't feel right for a month or so. You should be taken off slowly. You've been on it for 10 yrs., take it slow. I would fight tooth and nail not to be taken off cold turkey. If you have to refuse, unless you can be brought down slowly. Just my opinion again, but that's what I'd fight for, or do myself.
Thank you for being here. We learn from each other just this way. RLS is a progressive disorder. We never know what we'll say that sparks good conversation or just general education about how to cope. Everyone is welcome, there is no mild RLS.
You'll find great people here. Understanding and wonderful to get to know.
Hope you have a great day and an easier evening.

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