How I cope with RLS for 20 years

[stathal]

I believe I've had RLS since I was a child. I was diagnosed 20 years ago and given Sinemet 25/100. I take 1 to 3 at bedtime and it serves me well. I have had several doctors try to take me off this drug and have had me try numerous gourmet drugs and all had side effects that made it not worth it.

[Joolsg]

Sinemet was one of the first dopaminergic drugs prescribed for RLS. It is no longer prescribed because it has the highest risk of Augmentation.

If you have been taking 25/100 for 20 years without experiencing Augmentation, you are extremely lucky ( and rare).

Clearly, if it's working for you and you can sleep and not suffer daytime RLS, then brilliant.

I hope it continues to give you relief from RLS.

[Hidden]

It's great that you have such a success story with Sinemet and I hope it continues to give your RLS relief.

As Jools says, Sinemet went out of favour for RLS because of the high risk of augmentation. It was replaced by the dopamine agonists. These too, now are going out of favour because of the risk of augmentation. A lesser but still significant risk.

I'm not sure what drugs you refer to as "gourmet", but there are alternatives to Sinemet/dopamine agonists which are effective for a lot of people.

I write this because I wouldn't want anyone reading this post to think that any dopaminergic agent is a good first choice for RLS.

The high probability of augmentation doesn't make it a long term solution.

[MS4657]

Have you had any other side effects with it? I took it for about 12 years same dose and I started have issues with my esophagus so they took me off it because Dr’s thought it may have been causing the problem. I have been off them for 2 years now and still having the issue. They have me on gabapentin which is now not working as well and they just tell me to up the dose but the side effects are terrible. Hoping they will let me go back on the Sinemet it worked better than any of the others that I tried with no side effects.

[mckerr in reply to MS4657]

I have been on 3 CR and 1 IR Sinemet for years. No side effects and works well. Take my 1st 100 mgCr at 8pm, Next at about 2am and last about 7am. I have Lyme so I sleep a lot. I just wish the half life was longer.