Best medication

[lorri214]

What is the best medication to switch to when coming off mirapex?

[ChrisColumbus]

Frankly, it varies from person to person: this *may* vary depending on the amount of damage that the dopamine agonist has done to the system, and also to the degree to which a person can tolerate a drug.

You've had advice from   SueJohnson who takes 1500 mg gabapentin after augmenting and it completely controls her symptoms. (Gabapentin and pregabalin are now first line drugs for treating RLS rather than the dopamine agonists like pramipexole - Mirapex - and ropinirole - Requip).

On the other hand, you've also heard from   Joolsg who tried gabapentin, pregabalin and oxycontin - after augmenting - without success but who then found that 0.4 mg of buprenorphine completely controls her symptoms.

These drugs can all have different side effects, and some people get on better with one than another. It's usually said that gabapentin or pregabalin side effects tend to wear off after a few weeks; this can also be the case with buprenorphine, although I note that Jools takes 25mg pregabalin to counter opioid panic attacks and 10mg cetirizine for opioid sweats.

[Beckonwood in reply to ChrisColumbus]

I came off Mirapex cold turkey. I found I had gained considerable weight and that the more I took it didn't help. I did go on oxycontin which helped and then found over a few years I was up to taking o4 5 a day and my general practioner refused to write a script for me. So I went to Relievus which does give perscriptions for it and then about five months ago I started pregabalin which has really helped and now I take 75 mg early evening then one oxycodone during the evening and later take a 50 mg. of pregabalin during the late evening say around 9 or 10 pm. This seems to work for me right now but don't know for how long. I have found over the years that I have to switch medications as eventually they don't work as well as they did in the beginning. I can't begin to wish this problem on anyone.

[SueJohnson]

My personal opinion is that opioids are great when one has tried everything else like gabapentin or pregabalin and they haven't worked. For several reasons.

-There can be supply problems with the opioids.

-Friends who don't understand RLS will be afraid you will become an addict - of course on the low doses you won't.

-Doctors are reluctant to put you on opioids, and even if your current one will, at some later date you may have a different doctor.

[collageartist52 in reply to SueJohnson]

here is the part of "fear of addiction" that i don't get. If we are to deal with this for the rest of our lives, we are never going to get off those opioids...so, are we "addicted"? Or are we simply dealing with one of the most heart-breaking and infuriating, difficult to treat condition, with no cure?

[SueJohnson in reply to collageartist52]

One becomes dependent, not addicted. Symptoms of addiction include uncontrollable cravings and inability to control opioid use even though it's having negative effects on personal relationships or finances.

[ChrisColumbus]

Sue makes a good point about ongoing availability: while you've never completed your profile to show which country you are in, I suspect that you're in the US or Canada? Are they clamping down on opioid prescriptions where you are?

[lorri214 in reply to ChrisColumbus]

So far I can get my oxycodone every month. I have been taking that for years with the mirapex. Im not quite sure why the dr. took me off mirapex. I am now taking 4 oxycodones a day (5 mg each) spread out. I don't get the rls during the day but for some reason my legs know to act up at night. Every night even with the oxycodone almost all night. I walk back and forth crying a lot of the time. I'm so exhausted I feel like I will fall down. Well, tomorrow I am going to see my neurologist and she better have an idea up her sleeve. I was better when I was taking the mirapex. I might loose my cool with the dr. tomorrow!!!

[SueJohnson in reply to lorri214]

Your doctor probably took you off mirapex because s/he knew that up to 70% of people on it will eventually suffer augmentation which believe me you don't want. Please don't ask to go back on it.

[SueJohnson in reply to lorri214]

Part of the problem is you are still suffering withdrawal from Mirapex. It can take some time for that to settle. Also if you aren't taking oxycodone every 6 hours you may be suffering from mini withdrawals.

[lorri214 in reply to SueJohnson]

I saw my dr. yesterday. Since I am going on vacation I need something to settle my rls so I can enjoy myself. She told me to take one mirapex (.0125) 2 hrs before going to bed with the oxycodone just while I am away. I did it last nite and a miracle occurred. No rls. So I wll continue this while away and when I come back she will put me on gabapentin. Also I just finished 3 iron infusions. How long do they take to work.

[SueJohnson in reply to lorri214]

The iron infusion will starting working soon after you have it but can take up to 7 weeks or so to fully work. Have a new ferritin test after 8 weeks.