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Restless Legs Syndrome

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Trying to determine the right pace for tapering use of Neupro

RiversW profile image
15 Replies

I have started my second attempt at withdrawing for a dopamine agonist. This time Neupro. The first attempt was Mirapex. SueJohnson suggested I switch to different medication, but an appointment with my neurologist here in Brasil is not so easy to get so I would like to continue to decrease my intake of Neupro until I can discuss switching meds with my neurologist.

I am at the end of week 2 of 1mg a night and my symptoms seem to have stabilized. Infrequent classic jumpy legs and arms, but still burning, most often when I wake in the morning. The burning is not severe. Perhaps the worst side effect I am feeling is fatigue. I am very tired all the time. Even when, for me, I have gotten a decent nights sleep. (4 or 5 hours of interrupted sleep.)

My first question is this. By my description does it sound like I am ready to cut back further or am I being impatient.

My second question concerns the patch itself. They don't come in a strength less than 1mg. Can I cut the patch in half for the next stage of the taper.

Thanks everyone for their time and help. For me it has been invaluable.

R

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RiversW
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15 Replies
RiversW profile image
RiversW

Ok, sorry I just saw that SueJohnson has answered the cutting patch question before.

SueJohnson profile image
SueJohnson

And yes if your symptoms have settled you can reduce further.

RiversW profile image
RiversW in reply toSueJohnson

Thank you SueJohnson, can I also cut a 10 mg buprenorphine patch if i need help with symptoms?

SueJohnson profile image
SueJohnson in reply toRiversW

yes

sylvanwanderer profile image
sylvanwanderer in reply toRiversW

The buprenorphine patches that I was on COULD NOT be cut, as the cut edge would risk too much of the drug being taken up at once. (It destroyed the "continuous release" ability.)

RiversW profile image
RiversW in reply toSueJohnson

Also, can I increase my pregabalin to help with symptoms as well. Is that a better solution to try before increasing buprenorphine. Currently I take 25mg in the morning and 100mg at night. Thanks .

LotteM profile image
LotteM in reply toRiversW

There are no specific answers to this question that work for everyone. You’ll have to trial and error to see what works for you.

SueJohnson profile image
SueJohnson in reply toRiversW

Pregabalin is not likely to help much until you are off neupro for several weeks. You are better off to increase the buprenorphine.

After that combine your morning dose of pregabalin with your evening dose taking it 1 to 2 hours before bedtime as you won't have symptoms during the daytime. In fact you can do that now if you don't have morning symptoms. Increase it by 25 mg every couple of days until you find the dose that works for you. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin."

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

RiversW profile image
RiversW

again. Thx. Obrigado!!

shaughnna profile image
shaughnna

Were you taking Neupro for RLS? Did it work? I’m not familiar with drugs that are primarily for Parkinson type symptoms. But I can tell you this. I was on suboxone as I wanted to take a vacation from morphine that I had been taking for years for trigeminal neuralgia. I was given a weaning off schedule over one month. Forget it! The pain was unbearable. I went to a local clinic who agreed to put me back on it and when I was ready, they would work with me, as the Md who put me on it (I didn’t even ask for it, but she told me how bad morphine withdawal was and that this would help . Forget it! I went back on it and they agreed to let me reduce the dosage as I saw fit. Well it took me over a year. At the end I was taking 1/16th of a strip, as hard as that is to believe, and I was on it for a month. Since then I have read about the horrors os people who could never get off it.

Since then I have heard that the easiest way to wean off drugs that are impossible is to at some point take another pain drug for a short period of time when withdrawal pain is at it’s worse.

However this would not be good for a person who was addicted vs dependent on the drug. I was told by my doctor that there is a Md in N. H. Who does only this.

Th

RiversW profile image
RiversW in reply toshaughnna

Yes, I was taking Neupro for RLS and I am still in the process of weaning myself from the drug. Hopefully I will succeed but really at the beginning,

Sounds pretty horrible what you went through. I hope all of that pain is behind you.

R

shaughnna profile image
shaughnna in reply toRiversW

It is, thank you. I was trying to tell you and anyone else who might be struggling with weaning off a drug, that it can be done. Just go as slow as you have to. Don’t rush it. Good luck!

Shaughnna

RiversW profile image
RiversW in reply toshaughnna

Thanks so much. Its good advice. I do find it hard to be patient.

shaughnna profile image
shaughnna in reply toRiversW

It took me so many tries before I took the advice of others. It’s normal thinking just to want to be off it, but once you accept the fact that you have to go slow, no matter how long it takes, well in my opinion, then you’ve got it beat!

RiversW profile image
RiversW

Thanks for those words. I appreciate it. This is my second try. The first was an attempt to get off of mirapex. It was basically cold turkey and a nightmare. Needless to say, after 4 nights of no sleep and wandering my neighborhood in LA all night. Racking up almost 30 miles. I gave up. Exhausted. Falling asleep as I walked. Frankly, it was dangerous. This time I am more prepared mentally and feel fortunate to have found this group. I will make it no matter how long it takes but I also don't mind saying that I am frightened. After so many years on dopamine agonist its going to be hard.

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