Update on My Neupro Withdrawal - Restless Legs Syn...

Restless Legs Syndrome

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Update on My Neupro Withdrawal

RiversW profile image
12 Replies

After all of the positive comments I wrote yesterday in my previous post things took a turn for the worse. Last night, the 5th without the Neupro patch was pretty awful. Every time I fell asleep, a pain would attack both thighs waking me and sending me walking until the attack subsided. The episodes lasted between 45 minutes and an hour and a half. The combination of dealing with the pain and lack of sleep is debilitating. Does anyone have an explanation? Is it possible that the patch gave out after 5 days. Also, I place the patch on my upper thigh. The manufactures suggest left or right upper chest or back, but I have always placed the patches on my thighs without an issue or compromising efficacy. Could this be an issue? And I tape over the patch to make sure it does not fall off. They are expensive! Can that damage the patches in some way?

Today, I am very tired and slightly disoriented wondering why things have gotten tougher not easier. I wasn't expecting a cakewalk but I also didn't expect to walk backwards. Any thoughts or advice? Thanks to everyone, Rivers

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RiversW
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Joolsg profile image
Joolsg

That is EXACTLY what is happening. Many people report the Buprenorphine patch does NOT last more than 4 days. So they suffer severe RLS from the 4th day.Two ways to handle it. Ask for a replacement patch at 4th or 5th day OR switch to pills.

20mcg patch delivers 20mcg every hour. That's 0.48mg a day. So equivalent pills will be 0.5mg. But in Europe and UK pills come in 0.2mg or 0.4mg. You could try 0.4mg.

In the USA, the smallest dose pill is 2mg and it might be similar in Brazil. You can use a pill cutter to break it into quarters.

RiversW profile image
RiversW in reply to Joolsg

Thanks Jools, I had already inquired about getting pills for this very reason but they do not have Buprenorphine in pill form in Brasil. I will discuss with my Doctor changing patches sooner. Just to clarify I am on a supposedly 7 day patch. People complain that the 7 day patch doesn't last but 4 or 5 day?

I replaced the patch today, one day early, so I will see how I do tonight.

As always, thanks for your help.

Rivers

Joolsg profile image
Joolsg in reply to RiversW

Correct. Most people on the 7 day patch say it lasts 5 day's at the most. Sometimes only 4 days.So, if pills are not available, ask for replacement patches at 5 days.

Good luck.

RiversW profile image
RiversW in reply to Joolsg

Thank you!

RiversW profile image
RiversW in reply to Joolsg

Jools, replaced patch yesterday, a day early, and had a relatively good night. You are right, the patch gave out; probably after 5 nights. 6 and 7 were a bust. As Twitcher suggested the dose is probably a bit small as well.

Thanks again,

Rivers

707twitcher profile image
707twitcher in reply to Joolsg

Because of absorption differences, the conversion from mcg per hour to mg at one time isn’t that straight forward. I’ve found that 7.5mcg per hour patch is roughly equivalent to .33 mg of sub-lingual; not the .18 mg you would expect. So 20 mcg is likely equivalent to about 1mg.

Incidentally, my first week with the patch, and it lasted a full 7 days. Guess I’m lucky…

Joolsg profile image
Joolsg in reply to 707twitcher

That is very good to know. Patient experience is always the best way to find something out. Thanks.

707twitcher profile image
707twitcher

I’d suggest following manufacturer advice and putting it where they recommend and not covering it with anything. Maybe experiment later when things are under control?

Also wondering if 20mcg patch is enough for you? That’s roughly equivalent to 1mg in a sublingual strip or pill. And that’s a fairly low dose. If you can’t get larger dose in one patch, use two?

Also, remember that it will take a full day or two for the patch to reach full effectiveness due to buprenorphine’s long half-life and the slow buildup. So if your patch really stopped working after 4 or 5 days, it might take some time for the new one to fully kick in.

RiversW profile image
RiversW in reply to 707twitcher

Twitcher

Last night, after replacing my Bup 20mg patch at lunch time yesterday, I had a relatively good night. I was up only once with minor symptoms and easily went back to sleep.

I believe both you and Jools are correct. The patch was ineffective after 5 nights and the dose is probably too low. I will discuss with my doctor.

Thank you for your help. Greatly appreciated.

Rivers

restlessstoz profile image
restlessstoz

Hi Rivers, I have just been through the process of adjusting my Norspan patch. I have been on buprenorphine for four years now starting with a smaller dose and then moving to the 20mcg patch which gave good coverage. However, whatever patch I have used, it didn't last longer than five days or so.

I have just had a hip replacement (six weeks ago) with complications (a huge post operative haematoma in my thigh) with caused additional pain which triggered more restless leg symptoms. On the days when the patch had run out, I found I was suffering a lot of RL symptoms not covered by the additional pain relief, and felt it wasn't helpful to my recovery to be constantly jiggling, moving my leg in ways that could have caused the hip to dislocate, and walking when so tired in the middle of the night, I was at risk of falling over which would have been catastrophic.

I decided I couldn't continue this way and saw another GP to my usual one, the doctor who reviews my opioid use every 12 months as is required in Australia so he knew my situation. He was very sympathetic trying to add something into the mix to help. I suggested instead of adding something else which only complicates matters, that I change the patch every five or six days instead to see if that would help. He was agreeable to try that for a ten day period and sent me off with two more patches. It did help that he already had a patient changing patches earlier, though due to severe skin irritation rather than lack of effect so knew you could get the patches approved for changing every five days.

Not surprisingly, the new regime worked. I had no symptoms at all from the first time I swapped the patch early. It's now been nearly five weeks and I haven't had a single episode since. It's like people on the oral medication describe- miraculous. In all the three years I haven't had relief like it. Having a constant dose which doesn't drop for the last two days of each patch, gives better relief than even on the first days of a new patch in the old regime. When I went back to the GP he was delighted and prescribed the six patches a month I would now need which has now also been ratified by my usual GP.

I also don't take the old patch off immediately. I give the new patch six hours to fully work before I remove the old one as was advised by another user.

I know I've gone into a lot of detail but it really helps me to read people's stories so thought it might help to explain the circumstances.

RiversW profile image
RiversW in reply to restlessstoz

Hey Restlesstoz, I truly appreciate all the detail and thanks for taking the time. Your schedule pretty much reflects my plan as well. I actually left the old patch on for 12 hours after applying a new one yesterday. I had also read about the time it takes for new patch to start kicking.

My neurologist here in São Paulo, though a Parkinson specialist, has been very open to my guidance. Guidance I have learned on this site I might add. He also reads post here as well. I would be lost without him.

Also like you, I have been helped enormously reading other's accounts of their tangles with RLS. I never cease to be inspired by their strength and generosity!

Take Care and Gook Luck!

Rivers

ChickenTwisty profile image
ChickenTwisty

I have Buprenorphine patch and have wondered if they can run out early. In theory the documentation states there should be 20% left after day 7. Mine has always weakened on day 6 and day 7 and the first two days of new patch also a lesser effect (but all four days, particularly day 6 significantly better than anything else tried prior).

Skin thickness, temperature, condition, blood flow, moisture content can certainly impact absorption rates ... how the thigh compares versus recommended areas, I don't know.

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