Coming off Neupro patch

[Caperry]

Coming off 3 mg Neupro patch , lots of skin irritation and blisters! I’m on day 3 down to 2 mg Neupro. Up from 1200 mg Gabapentin to 1500 mg. Will increase Gabapentin every 4 days or so and will decrease Neupro slowly every week or so!! Took small amount of Percocet last night (5-375). 1/2 tablet. Slept 5 + hours. Am I on the right track and what to expect? Have had rls for 20 plus years was on mirapex .25 to .50. Wasn’t working as good, switched to Neupro patch just had trouble with skin irritation it worked fine!

[Caperry]

Any ideas?

[involuntarydancer]

Seems like you are on the right track. 3 mg neupro is not a particularly low dose and you’ve been on a dopamine agonist for a while now what with the previous mirapex so you might have some rough patches as you continue to reduce.

Percocet will help. Normally the advice is to go really slowly with the withdrawal but with the bad skin reactions you’ve been getting you are probably needing to go a bit quicker. I suppose you could change to an oral d/a for the reduction.

It can take a while for gabapentin to build up in the system so it’s good you’ve started it now and are titrations up. Gabapentin probably won’t suffice to cover symptoms in the later stages of discontinuing neupro and for a week or two after you stop so don’t be too disheartened of it doesn’t seem to work for a while. However, it doesn’t work for everyone, so if you find that it’s still not terribly effective once you’ve been off the d/a for a while you may need to add in or change to another drug such as an opioid.

[Caperry in reply to involuntarydancer]

Thanks for information, hoping and praying for good results!

[involuntarydancer in reply to Caperry]

It is probably for the best to get off the dopamine agonist now but, as you’ll know from other posts on here, it’s a tough process discontinuing. Most people are very relieved with the ultimate outcome.

[Caperry in reply to involuntarydancer]

How many opioids should I save for rough times after I’m at zero patches, in case I can’t get any more?

[Birdland in reply to Caperry]

I understand that Percocet has oxycodone in it. I took oxycodone during my DA withdrawal. For me 5 mg was not enough to relieve symptoms but I couldn’t take more because I don’t handle opioids well. 10 mg would have given me a bit more relief. I don’t know how much Percocet equals 10mg of oxycodone but maybe this info will help you decide how many to save. Good luck.

[Caperry in reply to Birdland]

Thanks so much for your information, about how long would most people need that help?

[Birdland in reply to Caperry]

I’ve heard various timeframes. For me it was longer than most but I didn’t add Gabapentin. I wanted to see where I stood after I was free from ropinirole. Mine was a long grueling journey. Longer and more intense than average. From information I’ve gathered I believe the average time to “recover” after last dose of DA is 2 to 4 weeks. But hopefully the Gabapentin will kick in and your transition will be smoother than average. I hope this info is beneficial to you. One thing I think everyone will agree with is everyone has a different experience. But I find it helpful to hear other’s experiences.

[Caperry in reply to Birdland]

So what are u taking now?

[Birdland in reply to Caperry]

I’m still taking 5 mg of oxycodone. I can get it easily though dr Buchfuhrer a well known dr who is very knowledgeable on RLS.. I’m still assessing my situation, I get more relief from oxycodone now than I did when I was going through DA withdrawal but it’s not ideal, so eventually I may go to Gabapentin.

[Caperry in reply to Birdland]

I’m using dr Arthur walters with Vanderbilt in Nashville tn, I’ve heard great things about your doctor!

[Birdland in reply to Caperry]

He has been dealing with RLS patients since the ‘90s. He has a passion for helping us. And is very open to opioids as a treatment. I’m glad you like your dr. If ever you wanted to see dr. Buchfuhrer he does zoom appointments. I’m in Los Angeles. He is in the neighboring city of Downey.

[Caperry in reply to Birdland]

Do u every hear of someone that it went fairly easy for?

[Birdland in reply to Caperry]

Yes, I have heard from some people on this sight that it was not too difficult for them. Can’t remember their details though.

[Caperry in reply to Birdland]

Did u have symptoms in the daytime or just at night?

[Birdland in reply to Caperry]

I did have symptoms sometimes during the day before I started the DA. But once I was on ropinirole for a while I began going through augmentation and the symptoms kept getting worse. They were round the clock and somtimes even when I was just sitting. They were so bad I couldn't even go to the dentist without taking a pill. Now that I'm off ropinirole I don't get symptoms at all during the day.

[Caperry]

Hopefully I can be normal and go to a wedding first weekend in August

[involuntarydancer in reply to Caperry]

These life events (weddings etc) are important and it’s good to have a date to work towards.

[mitziblue]

I was on fentanyl patch and I got blisters from it while on it. I even got a staphylococcal infection from the blisters. I’ve never been allergic to any medicine. Then came fibromyalgia and I’ve had RLS forever. I’m no longer on the patches. They were awful. I also can’t take a lot of medicine now. My doctor gave me Ropinirole 1mg. I take 1-2 at bedtime and can take them during the day if needed. It’s really helped. Sometimes I get the RLS in my arms, thank goodness it’s not often. I hope this helps you.

[Caperry in reply to mitziblue]

Hopefully I can get off the patch and not take another dopamine, I’m trying to get there! Thanks

[Caperry in reply to mitziblue]

Is ropinirole better than pramipexole?

[mitziblue in reply to Caperry]

Pramipexole is taken for Parkinson’s mostly. I’ve never been prescribed that for my RLS. I’ve had RLS since I was a little girl. I always assumed there was nothing anyone could do for it. As I got older it got worse. It was like I was riding a bike in my sleep, if I could sleep. Finally I asked my doctor and she prescribed Ropinirole and I couldn’t believe how much it helped. I was sometimes getting the RLS in my arms. I normally take one before bedtime. Sometimes it takes two but not often. I barely move my legs now. If I do it’s nothing compared to before. Ask your doctor. Please let me know if you get relief. I sure hope you do because it makes sleeping miserable. Good Luck, Mitzi

[Merny5]

Hello Caperey, Personally I think you might be reducing too quickly. I know that you are having a reaction to the patches but maybe reduce every 2-3 weeks. Reduction too quickly can cause horrendous consequences. Good luck.

[Caperry in reply to Merny5]

Thanks I’ll see how it goes, have u been on the patch?

[Merny5 in reply to Caperry]

Yes, 9 mg. and it has taken me over a year. I have been suffering from DAWS. Dopamine Agonist Withdrawal syndrome

[Caperry in reply to Merny5]

Oh my, u got any tricks? Sorry u are going thru that, have u had other medications to help? I was on 3 mg. And dropped to 2mg

[Merny5 in reply to Caperry]

Well, not really. I now have and significant depression, anxiety. horrible crying spells that come from nowhere. Started taking wellbutrin after this all started. I’m not sure how I would feel without it. So I don’t really know if that Is working. As far as controlling my RLS, I am taking oxycodone. 15-20 mg. per night. I start taking it around 5 pm. ( I take it in 5 mg does. That way I can take less if needed.) It seems to keep the beast away on most nights.

[Beamishmom in reply to Merny5]

My experience with DAs was rough. Sounds much like yours. In the fall of 2015 I reduced my dose of Requip from 12mg daily to 4 mg daily in 6 weeks. My Dr. basically abandoned me to his newest PA in training and I tried Gabapentin to no avail. I'm certain that I suffered with extreme DAWS but no one offered me anything that worked. In 2018 I switched to 4mg of Neupro daily and still use that same amount. Because I have PD and RLS many of the drugs offered by the Psych. did not work and many made the RLS symptoms worse. I am currently on a study testing a continuous delivery of Dopamine and 100 mg of Wellbutrin. It's the best I've been in a long time. Anxiety is still a problem but I believe with the way the world is now days its real anxiety not just DAWS related and my faith in Jesus Christ has been hugely encouraging. I have to say that the passing time helps heal, but I get it that this is the last thing you want to hear. One practical suggestion, well two real, get as much exercise as you can. Especially cycling. tons of info on the net is available. Two, I sometimes just gave into the anxiety attacks and instead of fighting it I just cried and screamed and even took an old tennis racket and destroyed several large boxes in an effort to chase the anxiety away. It seemed to work better than resisting the anxiety. I don't know if your Doc would subscribe some other form of Dopamine to treat RLS, you could ask, oh and I don't eat gluten any more. Wish I could give up sugar

[Caperry in reply to Merny5]

Tomorrow night I’m going from 2 mg to 1 1/2 mg

[ncrdisabled]

you could be allergic to the glue used to hold on the patch i had the same problem . i have had rls for over 30 years and have always been on reequip .50mg

[Caperry in reply to ncrdisabled]

I hope I can get off dopamine agonists. But of course, what is next? Thanks

[Beamishmom]

Is there a protocol for reducing Neupro? I think you'll have better results going slower if you can stand it..My experience with reducing Requip was terrible reducing 2mg every 2 weeks. Might mean nothing, but...

[Ranjits]

I am on patchs as well 2 mg works ok with Rls but skin irritation and blisters every where on my body cannot sleep because so much itchy have at telephone appointment with consultant today see what he says I want to come off patchs if this skin problems doesn’t improve let you know take care

[Doreenw]

How long have you been on the patches? I am into my second year of 10 mg norspan patch, my life is back to normal ( no symptoms at all) I am lucky as I haven’t had any skin reactions