Restless Legs Syndrome (RLS) Discussion Board

Ok...I have an appointment with my doc this afternoon and am armed with all the new info I have been able to get from many here. I have been on permax for years and it worked for a long time, but was starting to augment when they took it off the market. I am now quite confused over what to try next. My doc is normally very good at giving me a script for anything I need (also diabetic) since he knows I do my research before asking for anything. Problem is I honestly do not know what to try next. Am thinking of mirapex, or possibly the patch if my insurance will cover it. Any suggestions???? Please????

I would suggest printing out the Mayo clinic algorithem and taking it with you to the doctor. There is a link to it in my signature line.

Read through it and mark the things you have already tried and what has and has not worked for you. This will help your doctor to come up with a plan for you.

I'm currently on Mirapex .25mg per day and it is working. There is about a week of transition as your body acclimates itselft to the drug. You'll feel hungover and have a slight headache.....the hangover has gone away with my symptoms, headache occasionally but nothing that asprin wont take care of. GOOD LUCK!

This may be too late (my current sleep schedule has me getting up between noon and 2 PM).

The algorithm would be good, as Kathy said, but the patch isn't on it.

If it were me, I'd see if you could get the patch. You augmented, so you know that DAs have that capability for you. The patch is "supposed" to help with it. Only way to find out if the insurance will cover it. . .

If you can't get the patch, I'd try Mirapex. Of course, that's just me and (disclaimer coming), I am not a doctor. My reasons are that you take less of it, it seems to cause less problems with nausea, and it works slightly longer.

Let us know what happens.

Thanks so much for all the info everyone. I am on my way to the doc and will let you all know how it goes. I have the info from the clinic printed out to let him read and I am going to ask about the patch and if not I think I am going to give the mirapex a try.

Thanks again....*S*

Ok....he gave me mirapex to try..0.5, one or two a night. He said my insurance won't cover the patch yet..although if I wanted to pay for it he would have given me a script for it, but it is too much $$ right now. He was impressed with my material I brought from Mayo, and actually had already glanced at it himself and kept the copy I brought. Also got the bad news that I have to go on insulin after being on oral meds for my diabeties after 15 years, so I am a bit upset with that info. Oh well.....lets give the mirapex a try and say a prayer that I will get some sleep tonight.

Thanks everyone.....*S*

Hopefully the insulin will keep your levels under better control. It is hard when you hear those words, isn't it?

I hope that he's got the dosage on the Mirapex right. I don't have Dr B's book in front of me to know if he has a conversion for it. Try the smallest dose you can and see what happens. Who knows? You might be able to get away with less than .5 mg, though that is about the average dose.

Yeah, I didn't think the insurance companies would cover it yet. . .it usually requires at least a few studies published about its effectiveness before a drug can be on the formulary (allowed to be prescribed). Since it's still in trials for RLS, I suppose that there ares't any independent studies, yet.

Hopefully by this time next year, it will be available. That's a long wait, though, for those who are ready for it.

I'd be a little concerned about starting the Mirapex at .5. It seems like most people start at .125, and some even cut it in half. I really wish the doctor had told me when I first started taking Requip, to stick with the lowest possible dose that gives symptom control

It really seems like the dosages in those starter packs go too high too soon, which can lead to quicker augmentation.

Maybe cut it in half or fourths for the first couple nights and see if it works?

I'm not a doctor, but it just seems like a high starting dose...

Susan, I think the move is from Permax, right fulltimemartins? So, it's just changing from one dopamine drug to another.

But, as you said, Susan, if FTM is already off of the Permax, a lower dose would be essential.

Well the very good news is that I have been 2 whole days with no trouble with my legs!!! I have, for 33 years, prayed for just a couple of days without it and now I have experienced it. The mirapex is working I hope and when I get up in the morning I have no after effects of it. I am so, so happy and it is amazing what sleeping like a normal person for 2 nights will do for you. I only hope this can continue...and naturally I am concerned that it won't, but I am enjoying it while I have it. *S*

I did speak to my doctor after several of you mentioned something about the dosage and he said his experience of patients that had rls as bad as mine were that the lower dosage didn't work for them and told me to try it if I wanted to.

Thanks for the help everyone....

The starting dose is only important. Some people have a LOT of problems when they start with that high of a dose.

Also, while your doctor is right that .5 is the average, I was able to use .125 for quite awhile. It's sort of odd - there doesn't seem to be a correlation to how "bad" the legs are, rather some of us respond more easily to the med.

As long as it's working and you are not having any difficulties - and it sounds like it's wonderful! - then all is well.

can someone enlighten me about this patch you all keep referring to? I need to get my hands on this patch.

PD, it's called the Neupro patch, and it has been approved, and being marketed for, Parkinson's disease. It's contains rotigotine, a dopamine agonist, so it's similar to Requip and Mirapex, but since it's a patch, delivers a steady dose of medicine. They think that will cause fewer problems with side effects and augmentation.

There is one in the works for RLS, but it's not out yet. But Parkinson's drugs are commonly used for RLS. The big problem right now is getting insurance to cover it. I can't imagine it's cheap, since it is new on the market.

thanks Susan for the info. I haven't faired well on Dopamine Agonists in the past, I need a patch that is a pain releiver like vicodin in a steady stream, anything like that? Trying to find something long acting (so it lasts all night) is becoming difficult. MS Contin keeps me up, Ultram ER isn't on my insurance, now we are looking at Oxycontin, also not on my insurance but way less expensive. I need a patch or numbing injection for my legs, then life would be good again.