A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Sojourner »

Zach wrote:
jannazoo wrote:Am interested in hearing how things are working out? I was diagnosed over 15 years ago and have been on carbidopa/levodopa for over a decade - it's wearing.

Good god... you're not on this for daily RLS are you?

While sinemet (won't print out as one word for some reason *) takes a beating with respect to frequent or daily use, in the scheme of things, "if it ain't broke, don't fix it." I personally had a good run with it on a near daily basis for about 3 years. So, it can be done and trying it on a regular basis shouldn't be dismissed (in my opinion)--particularly if the augmentation aspects are monitored closely. Can trying it on a daily basis be any worse than trying Mirapex, Requip, etc where augmentation is also an issue. Like so many other meds, probably an individual issue and most doctors knowledgeable about it would caution or recommend against it's frequent, long terms use.. But, if I were hurting and hadn't tried it I would give it consideration.

* edited on 6/16 to make it one word.
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

We've had several people here say they took the same dose for upwards of 15 years without an issue. They are just few and far between. It's really hard for those of us who had an almost violent reaction to a drug (sinemet, Klonopin, to name a few) not to react with horror when we hear them. I've really had to teach myself not to freak out when someone says some of these magic (NOT!) words, lol.

You have a great point, Sojourner. It is so individual. The last I heard, they decided that Sinemet will always eventually cause issues. The difference is in how long. To get 15 years? Man, I'd take that!!!!! I didn't even get one day - I agumented in one dose. Just goes to show how short and how long it can take before it causes problems.

If we remind people of the potential issues, we've done a good thing.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Neco »

If its working for you then that is indeed great to hear.

But with a drug that has a 75% augmentation rate, and many people reporting horrible experiences (myself included) its just second nature to ask.

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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by badnights »

The guy who first prescribed Sinemet for me suggested that I think about the 25% who didn't augment. Hahahah. After he had said that, though, he agreed to prescribe something different.

I later gave it a trial on a daily basis as a supplement to my hydromorphone, but sure enough I began to augment and stopped it. It wasn't a violent augmentation, because I was taking only one extended-release 25/100 daily, and I caught it early.

I do use the regular (not extended-release) levo-carbidopa for breakthrough, though, and it is a godsend. I regard it with an uncomfortable mixture of fear and desire. I use it probably less than I could, just to be safe - only 3 or 4 times a month.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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