Last step of Neupro withdrawal

[RiversW]

Hi Everyone,

First, I would like to say again how deeply grateful I am to this community. In the 50 years of suffering through RLS, never, never have I gotten more valuable information and support. If I had only found you earlier.

I saw my neurologist here in Brasil yesterday. He is a doctor who I like very much but his specialty is Parkinson's and Alzheimers. However, unlike many doctors I have seen, he is very open to new information. He is learning along with me. I send him a lot of info I have discovered here and he is always quick to thank me.

I am in the final stage of withdrawing from Neupro. For the last week I have been applying a 1/2 mg patch a night. My symptoms have been mild to moderate. A couple of nights with the classic jumpy sensation and a couple of nights with aches and burning. During this period I have gotten 3 to 6. hours of sleep a night. Not bad for me. In fact, my normal. I asked my doctor what he thought my next step should be. How long I should wait until I go to 1/4? His advice was to bite the bullet now and do not replace this 1/2 mg patch after removing.

Perhaps the answer here is subjective, but I would like to ask the opinion of the community here.

Thanks so much,

RIvers

[SueJohnson]

I would wait 2 weeks and go to the 1/4 since the lasts steps are the hardest.

[RiversW in reply to SueJohnson]

Hey SueJohnson, my patron Saint-- I must admit that I am impatient to get this over with which is surprising considering my experience 3 years ago trying to detox from Mirapex was so devastating. But son is coming to visit me in three weeks and I was hoping to have the worst behind me.

Is you recommendation the same even though I am also using a 20 mg buprenorphine patch?

Thanks so much.

Rivers

[SueJohnson in reply to RiversW]

If your symptoms are still bothering you and have not settled down from the last reduction, I would wait. Your choice obviously.

[RiversW in reply to SueJohnson]

I think I will try 1/4mg and not jump straight to zero as my doctor suggested. Thx

[Deesee in reply to RiversW]

That’s a good plan to wait and not rush. I weaned off Neupro very slowly, cutting the last 1 mg patches by 1/4 slowly. I waited until my symptoms seemed a bit settled, then would reduce it again. I was on 1800 mg gabapentin and low dose hydrocodone at the time, but went slowly. If you’ve had RLS for fifty years, you can wait a little longer and wean so it works and is less painful for you. You deserve to treat yourself well. It took me over a year to go from 4 mg patch to none. Your son likely is very understanding. My son even suggested cannabis for a night when I made a decrease, which I also tried, and was helpful.

See the video on YouTube by John Winkelman on “RLS Updated Guidelines & Management Strategies”. He addresses the weaning off dopamine agonists. Best luck!

[RiversW in reply to Deesee]

Thank you very much Deesee. I will be patient and go slowly. Thanks everyone for responding and sharing their experiences. I am deeply grateful. Next time I write, hopefully it will be to report that the dopamine agonist are a thing of the past for me. Rivers

[Madlegs1]

I agree with Sue.

Let your body tell you how fast/ slow to go.

What will you take after this.?

Don't forget ferritin levels, triggers and healthy living.

Good luck.

[RiversW in reply to Madlegs1]

I am on a 20mg buprenorphine patch which I will continue for a while. Also, have been taking 120mg pregabalin. My iron is in good shape. Thank you.

[Munroist]

You have nothing to lose by going to 1/4. If you jump straight to zero and it's too much then you are in the disappointing situation of being uncomfortable and also having to go back. If you go to 1/4 and it's a non-event then you can be pleased and maybe go to zero a bit sooner but under control.

[RiversW in reply to Munroist]

Very considered. Thank you. R