Neupro patch

[lorri214]

anyone try the neupro patch. How good is it

[SueJohnson]

You don't want it. It is a dopamine agonist like mirapex.

[lorri214 in reply to SueJohnson]

What can i take. Too many side effects from buprenorphine. I need something today.

[LotteM in reply to lorri214]

What are the buprenorphine side effects you experience? Oh, I noticed them in your reply to Joolsg. Not good indeed. If you can stay put, they may lessen in a few days. Joolsg has some personal experience on the side effects and can advise what to do to.

Be aware that you most likely also still experience withdrawal from the pramipexole.

Hang in there if you can. And take care.

[lorri214 in reply to LotteM]

I can't hang in any more. I can't do it. what to do???

[Joolsg]

youtu.be/Tz7g9sxS0_I?si=1JI...(Not working as expected?)

Dr Andy Berkowski explains why the Neupro patch is BAD.

It's another dopamine agonist and does cause augmentation.

Many neurologists are under the false belief that it has lower rates of Augmentation, based on a flawed 2019 study. That 2019 study was backed by the drug company and referred to 2 earlier studies, one by Oertels from 2011, before the full extent of augmentation was known, and one by Claudia Trenkwalder in 2017.

Claudia Trenkwalder now speaks out against dopaminergic drugs.

So, Neupro is BAD, like all other dopaminergic drugs.

[lorri214 in reply to Joolsg]

so what do i use then. I had too many side effects from buprenorphine patch. I lost 6 lbs in 4 days. I could not eat. I could not look at food. I had diarhhea. I felt awful. I need something else. what is left. I need it today.

[lorri214 in reply to lorri214]

I am diabetic and cannot afford to not eat. that will affect my sugar levels.

[Joolsg in reply to lorri214]

Buprenorphine caused severe nausea for me for 10 days. I lost 7 pounds.However, I had reached the end of the line and as it stopped ALL my RLS, I was determined to make it work.

I used cannabis to stop the nausea.

It worked.

You only stopped Dopamine Agonists a month ago. It is still VERY early days.

The average withdrawal lasts 2 to 4 months.

If you go back on Mirapex, you are undoing all the hard work you put into getting off it and will damage your receptors.

We cannot give you the 'quick fix' you're expecting.

RLS is far too complicated for that.

You have to be patient and expect at least a month of hellish symptoms.

That's why we told you to clear your diary, take time off and be prepared.

As you're back on Mirapex, I agree with Lotte.

You will need to see an expert and listen to them.

[LotteM]

Lorri, please try to be a patient. It is hard. We know and understand as many of us have experienced something similar to what you are going through now. Give yourself some time for find your effective dose of buprenorphine. If you put on an extra patch yesterday afternoon, it is reaching its highest level tonight and you may feel its effect. If only by taking the edge off of your symptoms.

However - sorry if I sound brutal - you may still be experiencing severe symptoms due to the 0.125mg pramipexol you took last night. I really hope not!! Again, please be patient. Prepare yourself mentally as this process is goi g to take at least days, if not weeks. And get as much rest or sleep as you can during the day. Do you have someone close who can support you?

[lorri214 in reply to LotteM]

I took off the buprenorphine patch last night and took 2 mirapex and I felt better. I actually slept. Too many side effects from patch. I cannot go on any longer like this I feel like I am losing my mind. My husband thinks I need to go in a hospital it is so bad. Please give me another medical suggestion. I was not feeling well taking buprenorphine. I lost 6 lbs in 4 days, couldn't eat or look at food, had diarhea, felt like crap. I need to get some medication today or resort to neupro or mirapex for some relief.

[LotteM in reply to lorri214]

So sorry Lorri. We cannot do that as you have gotten to the point where very personal treatment is warrented. You’ll have to contact your doctor again. She sounds reasonable. And sufficiently knowlegdeable. Maybe a switch to methadone to see if that agrees better with you.

[lorri214 in reply to LotteM]

I am thinking about marijuana. Anything that will help. so sorry to be doing so much complaining, but I am at my witts end.

[TheDoDahMan in reply to lorri214]

The first night that I was put on 10mg/day of methadone my symptoms were completely eliminated. Try it before you go nuts. But first, drop the Bupe as it will block the methadone.

[lorri214 in reply to TheDoDahMan]

Thank you. That gives me hope. I went off the bupe after 3 days. It made me feel horrible with very bad rls. I lost my appetite. In 4 days I lost 7 lbs. I never felt that bad. Right now I have a fever so the dr cannot prescribe the methodone til fever is gone. she thought about trying neupro patch. I said no way.

[Kakally]

Please don’t take it. Instant fix with Neupro, but with horrendous torture augmentation to follow after months/couple of years. I had a horrendous 4 years of augmentation which I will never allow to happen again

Please do not accept the Neupro . Please persevere with buprenorphine a bit longer, but I personally would re quest adding very low dose methadone and if it is ok and works for you, increase a little bit if necessary.

I’m not sure what others on this forum would say…

Best wishes 🤗

[SueJohnson in reply to Kakally]

There is no point in taking methadone with buprenorphine as the buprenorphine blocks other opioids.

[Kakally in reply to SueJohnson]

Hi Sue, I know that is supposed to be true but…..a low dose buprenorphine patch plus low dose tramadol worked well for me for years as I cannot take higher dose of either

[LotteM in reply to Kakally]

I had the same with buprenorphine combined with kratom. Adding some kratom definitely helped with breakthrough RLS.

But I agree with Sue that often it doesn’t work to combine opioids. Maybe it worked for Kakally and me because both tramadol and kratom are not typical opioid (that mostly work because they attach to mu opioid receptors.

[Kakally in reply to LotteM]

I agree that it is uncommon and generally not a good idea to mix opioids but it can be very helpful if the person can only tolerate low doses of either drug (such as I can)

Occasionally butalbital plus codeine is prescribed as a single medication. (Both are opioids). I can’t tolerate codeine at all so never tried it.

Yes tramadol is an opioid too.

I think we are all so individual with our RLS that we have to respect people’s responses to e.g. caffeine helps RLS…. Caffeine makes RLS worse etc etc…

Very best wishes to you LotteM (and to all of us in our struggle to get better, or at least improve ) 👍🤗🤗

[Kakally in reply to Kakally]

Hi Sue,

Hopefully methadone plus buprenorphine is my next plan seeing as I have eventually started slight augmentation with tramadol after 16 years(. I’ve been waiting for this day👎😱)

I feel certain that e.g. 2.5mg methadone plus the buprenorphine might suit me well (or conk me out unconscious completely… not sure which)

I will report back if/when I eventually get the prescription which is very difficult in the U.K.

I agree that it is uncommon and generally not a good idea to mix opioids but it can be very helpful if the person can only tolerate low doses of either drug (such as I can)

Occasionally butalbital plus codeine is prescribed as a single medication. (Both are opioids). I can’t tolerate codeine at all so never tried it.

Yes tramadol is an opioid too.

I think we are all so individual with our RLS that we have to respect people’s responses to e.g. caffeine helps RLS…. Caffeine makes RLS worse etc etc…

Best wishes++ Sue

🤗🤗

[Kakally in reply to Kakally]

By the way, Yes I have of course done all the dietary acupuncture etc etc etc. things, alpha 2delta ligands 2 DAs before the magic Neupro worked for 15 months….that then became the augmentation horror with subsequent 4+ years of trying to get off it

[SueJohnson in reply to Kakally]

Combining other opioids is fine. It is combining an opioid with buprenorphine that is a problem. The buprenorphine will continue to work, you just won't get much if any additional benefit from the methadone.

"Buprenorphine is a partial agonist at the mu opioid receptor and an antagonist at the kappa receptor. It has very high affinity and low intrinsic activity at the mu receptor and will displace morphine, methadone, and other opioid full agonists from the receptor." psychiatry.uams.edu/clinica...

RLSofManyYears emailed Dr Buchfuhrer, the world renowned expert of RLS, and he said the same thing.

Of course as you said we are all different. My suggestion is to try one first and after awhile add the second and see if it makes much difference.

[Kakally in reply to SueJohnson]

Cool….🤗

[lorri214 in reply to Kakally]

I thought you could not combine opiods. My dr. Made me promise not to take oxycodone when on the buprenorphine patch.

[lorri214 in reply to Kakally]

I told the dr I did not want neupro. I think we are going with methodone. However, I now have broncitis with a fever. the dr. cannot give me new meds til the fever is gone.

[Kakally]

Please do get better soon… from the fever…. And then the RLS…🤗🤗🤗

[lorri214 in reply to Kakally]

Thank you and for all your help.