RLS after surgery

[ViewsAskew]

It was the Dr. from the sleep clinic that suggested taking up to 3 of Mirapex .25mg. I now take 1 1/2 at suppertime & 1 1/2 at bedtime (total of .75 mg. )I'm just hoping, cross my fingers & hope to die hoping, that the Mirapex will start working again.

That makes me feel much better. When you wrote 1.5 above, I thought you meant 1.5 mg! 1.5 tabs of the .25 mg is much better .

[kickyknees]

First, you have to change doctors! Yours should be shot. After sneaking my drugs into the hospital to self-medicate I figured I'd let the hospital take care of me at my last surgery. Big mistake...BIG! The nurses were not apprised of my RLS and I had to wait until "rounds" to be given my meds which threw me off schedule. Also, the hospital will charge you for name brands, calling them that on your chart, but they are giving generics. Ripoff to the insurance and Medicare (if you're old enough). Drugs are going with me the next time I have an admissible surgery.
There is no way I could exist on 1mg/day of ropinirole. I have to take that amount 4x/da with an extra .5 at bedtime to not be awakened early with the Fits. And I supplement 7.5 Hydrocodone with each ropinirole. In my 5th year, so no augmentation yet *fingers crossed*. I did not have symptoms until after a rotator cuff surgery at which time I was given (found out later) a nerve block. After the morphine and oxy wore off, at home I thought I would go crazy from the combination of lack of sleep and restless legs! Because of the shoulder surgery I had to sit in my recliner to "sleep" but all I could do was rub my legs (with my one good hand) and cry. I have alerted the anesthesiologists on all successive surgeries to NOT use nerve blocks. Initially they deny that a nerve block could do that ("I've been doing this for 20 years and never....") I was lucky enough to get one anesth. who took time to listen and then explain how a nerve block differs from General Anesthesia. I don't know if another NB could make my RLS any worse, but I will now take the General every time.

[branti]

It's been 1 1/2 years since my surgery & my posting on this forum asking for help. My RLS symptoms were increased after surgery as neither the anaethetist or surgeon listened to me or ordered the meds I was on. I want to thank everyone here for all the advice & support you gave me during those post op weeks. I eventually managed to figure out a schedule of when to take my meds & I continue on that same schedule to this day. I take Elavil 25 mg & .375 mg of Mirapex at 7:30 & then another .375 mg of Mirapex at bedtime. It seems to work, at least most of the time, although lately I seem to be getting symptoms either earlier in the evening or find that the meds don't work at all. I'm worried that something is changing & although I realize I'm fortunate to have so many months symptom-free I don't relish having to try & figure out meds, doses & scheduling on my own. My GP is willing to work with me but he's no expert. Dr. B was so helpful last time, just wish I had someone like him here in BC. I do have some other health issues that are being investigated so that may be a big part of the problem. I've just registered for the Webinar on Augmentation so may get some answers there. Again, thank you for everything, you are all amazing.

[Rustsmith]

Your symptoms certain have indications that sound a lot like the beginning of augmentation. Hopefully the webinar will provide you with more information that you can share with your GP.

Some of the following was probably covered when you were here before, but just in case:

You said that you are taking 0.375mg of parmipexole twice a day. That is quite a bit and is also another potential sign of augmentation. Although Parkinson's patients can take a lot more, the guidelines for WED talk about a maximum of 0.5 mg and Dr B is even advocating a max of 0.25. You also indicated that your meds do not always control the symptoms when they start early. This is not unusual and the experience for most of us is that if you don't take a DA before the symptoms start, it will be a long night.

You didn't say whether you have had your ferritin level checked. Anyone on a dopamine agonist like pramipexole should have a ferritin level of at least 50 and preferably 100 to help minimize the chances of augmentation. Ferritin is not part of a normal blood test, you GP has to order it specifically.

As for the webinar, if you have not participated in one before, be aware that you can submit questions. There is time at the end where the speaker provides responses, but there is a limit on the time so not all questions get answered. So, if you have a question that you want to ask about your situation, be sure to submit it early.

[branti]

Your response, Rustsmith, reminded me about ferritin levels. I haven't had one for quite awhile,will have to rectify that. I can't even recall what my level was the last time. It took so long after my surgery to get on top of my symptoms, trying different doses, different times, different combinations that I'm desperately hoping not to have to go through that again. Your suggestion that my daily dose of Mirapex is too high worrys me. The Dr. from the Sleep Clinic was the one to suggest that dose. It's scary to think of trying to cut back. I'm sure it's been mentioned here at some time but how do you cut back... slowly, quickly or cold turkey? Maybe I will submit a question to the Webinar. Thanks for telling me about that.

[ViewsAskew]

branti - the dose is what used to be a relatively low dose. If you asked your doc, he would say it's much lower than the FDA guidelines for this drug. And he is right.

In the past ten years, we've learned a lot about these drugs. One of the key findings is that at doses higher then .25 mg (per day), the risk for augmentation increases dramatically. There are two equally important concepts related to using dopamine agonists. 1) Only use them when serum ferritin is OVER 100; and 2) only use them in SMALL doses (.25 mg for pramipexole, 1.0 mg for ropinerole).

But, this is still cutting edge information. You will only find it in print is a few places. One of them is in badnights (one of our moderators) signature. It's an article written by Dr Mark Buchfuhrer where he lays out this new guideline. You could print it, highlight, and take it to your doctor, say that you want his opinion, and give it to him. It might work. It might now.

If you can cut back, do so. But, my guess is the same as Rustsmith's - you've already augmented. How to get out of this pickle? It's a lot easier if you have a doc who's dealt with it before. There are two approaches for someone in your situation - someone who is augmenting for the first time.

Some doctors would simply change you from pramipexole to ropinerole or rotigotine. It might make some sense to try rotigotine - it is a patch and delivers a steady low dose stream of DA.

The second is to withdraw from pramipexole using an opioid, then assess which drug to try after you are no longer augmented. This never was done in the past. Some doctors, however, have seen so much augmentation that they feel it's better to use other classes of drugs, particularly the anti-seizure class. To withdraw you would:
1. Get a script for a strong opioid. You'll need it for 1 to 4 weeks at a minimum.
2. Stop the DA cold turkey. (If you were taking very high doses, you'd titrate down, but no need to at the doses you are taking.)
3. Take as much opioid as needed to cover the increased symptoms. For some reason, once you augment and then stop the drug, the symptoms get much worse. This lasts for a few days up to a month. Since this is new to you, it likely won't take a month, but rather 4 to 14 days.
4. Once the increased symptoms stop, you and the doc have to figure out how to treat you next. You may not want any pharma drugs. You may find that your ferritin is low and that with iron supplementation your symptoms decrease. Whatever you do, think hard about whether you want to try another DA.

I have a bit of ambivalence. Now that Rotigotine is out, many docs feel that people will not augment on it and that it will solve that problem. I'm not so sure of that. They felt that would happen with ropinerole, too. But, it didn't. And, we've already seen a few people who have augmented on it.

Some doctors feel that you may get a few more years on this drug before augmenting, so it's worth it. Having been through augmentation several times, I'm not just anything is worth it! It's a PITA! And it may forever change our brain chemistry (we don't know, but some of us have that theory).

Tough decision. And, a very hard one without a doc who "gets" this whole thing. One excellent idea is to go read recent-ish posts at rlshelp.org. Dr Mark Buchfuhrer answers people's questions about WED/RLS there and you can read the questions and responses. You'll get a very good idea of what augmentation is like and you can print the questions and answers and take to your doctor. You can also write the doc yourself and get an answer. That's what helped me help my doctor to treat me appropriately.