Advice please weaning off Neupro

[Pippins2]

Hi ,I have had RLS for 40 years (as did my mother and my daughter ).I got augmentation from Pramipexole after a few years and went through hell getting off it .I was able to get slow release release Morphine and Gabapentin for back pain .However did not help my RLS at all so tried Pregablin and Clonazepam but even taking a good mixture of meds nothing helped .I was waiting to get over the first couple of months hoping things would settle down but they never did unfortunately in my case I gave it a full year then couldn't take it any longer so went onto Neupro patch which I know is another Dopamine Agonist and not recommended after having augmentation but I was going nuts !, I stuck to the lowest dose patch of 1mg never upped it and took breaks .I got several very good years which was a bonus after having augmentation. Now my patch is getting less effective and my arm is joining in the party and symptoms starting n the evening instead of later in the night so doesn't take a genius to work out augmentation s back .I have been slowly weaning off the patch just using a quarter of a patch now but its difficult not much sleep going on i am now about ready in my weaning schedule to stopped my Neupro patch completely.

Now here's the problem will the same thing happen as happened years ago when I stopped Pramipexole where I can't find anything else that works for me I can increase my Morphine I have Pregablin which I can also increase although it causes me to gain weight I have Clonazepam, Zopiclone and over the counter Cocodamol which is very weak .I had all of these last time but my RLS never settled down enough to a level I could cope with even after a year off Dopamine Agonist.

The GP I like has left and the remaining ones are anti opiates although they allow my Morphine as its slow release they won't let me try any other apart from Targinact which I found pretty useless

My ferritin is normally checked annually and hovers around the100 mark but GPs refuse to do it anymore as " perfectly adequate " so I won't know if it's dropping or not .

I am clearing my diary ready for in a couple of weeks time when I stop the patch completely, I just want to do a couple more weeks weaning using an 8th of a patch first

My worry is I won't be able to function without the patch as nothing else available to me helps very much and I will cave in and go back on Neupro eventually just for a bit of short term relief

Thankyou any advice welcome

Oh I take gentle iron alternate nights and I have to take Paroxetine for depression which I know is one to avoid but Wellbutrin is not available for depression in the UK and the massive dose of Trazadone I needed made me a zombie and I couldn't drive etc and didn't work well for me

I have sleep apnea-made worse by the Morphine so use a Bipap.

Pipps x

[Joolsg]

Hi Pipps,I'm sorry that the Patch has finally turned on you. I know your regime was working well.

Like you, Targinact ( Oxycontin) was useless for me. Pregabalin was good as a sedative but didn't help my RLS.

I can only suggest you pay for a private phone consultation with Prof. Walker at Queen Sq, London as he would consider prescribing Buprenorphine, as you've exhausted pretty much all the other options.

As you are on Cpap and have been on morphine, I suspect Buprenorphine would really work well for you. Your GPs will probably refuse to prescribe it off licence without direction from a neurologist. Hopefully, further treatment and prescriptions can then be on the NHS.

I wasted 5 years on Oxycontin and pregabalin and still had severe RLS.

I take 0.2mg Buprenorphine at 10pm and 0.2mg at midnight ( I cut the 0.4mg Accord brand in half) and it completely covers my RLS.

I'd love you to get the same result, particularly as you were so helpful to me when I went through augmentation in 2016. You've helped so many people on here to get off dopamine agonists so hopefully we can now help you find a solution and a neurologist.

Take care,

Jools

[SueJohnson]

Another safe antidepressant you might want to discuss taking with your doctor is tianeptine (Stablon, Coaxil).

[joker826]

Hi Pippins2, So sorry that you have found relief. The regime my doctor has me on is taking care of my RLS and Neuropathy. I take 50mg of Trazodone and 600mg of GABA at bedtime. It gives me a good night sleep.

[Josana13]

Hi Pippin, Thank you for your response. When u have RLS how long does it last? I go for 4 days without sleep and RLS day and night. The 5th night I pass out for a few hours. Then ok for a couple of days and back to the above schedule. I hope what Joolzg reccomended works for you. I'm going to ask my doctor for it.

[Paganpatrick]

Hi Pippin2,

Like you I have spinal issues with RLS and depression I am also a diabetic and have IBS.

It’s been a long fifteen years to get to a balance of medication that helps all round. I found many meds brought unwanted side effects with them that often outweighed the positives. Gabapentin was no good for me and I had the worst withdrawals I have ever had coming off of it, far worse than stopping MST, Tramadol, Codiene at the same time. I tried duluxotine as a replacement but though side effects not as bad didn’t feel any benefit.

Today I’m on a Buprenorphine 35 patch as my primary pain relief with Oramorph for breakthrough pain. I take 20mg Amitripline for neuropathy pain though some say it aggravates RLS, thankfully not for me. I also take 5mg diazipam for muscle relaxation and I have 10mg zoplicone for sleep, though my tolerance to sleeping tablets is very high now. I just have to accept I don’t sleep very much and I think moving around at night helps the RLS and stops spine stiffening up.

I had a lumbar and spar spinal block procedure 8 months ago and it was incredibly good for six months then wore off. My pain Consultant is fitting me in for another round.

Buprenorphine gives pain relief without the zombie side effects I had from the MST/Tramadol/Codiene. It also helped with my RLS as an added bonus!

This change in prescription has given me a new lease of life. But it’s taken a long time to get there plus I’ve had specialist pain psychologist session on practicing Mindfulness and pacing. As so often I would do to much in one day then crash my bag in agony and legs like red hot pins in them and nerve flickering transferring from legs to wrist and elbows.

[wigglecat]

Wow...they have you on a LOT of meds. I hope some of them help some of your issues. I'm not a doc but at some point I'd start worrying about drug interactions. I had a problem with that a few years ago -- not similar drugs -- but it turned out that INTERACTIONS were actually causing a couple of major problems. The medical response in the US, at least with some docs is...more meds. I finally got a doc who cut a lot of them and the problems lessened considerably! I'm only mentioning that because it's something to think about in general. But it has to be done with lots of care and monitoring by a doc who really understands medication interactions.

As for Gabapentin, I have a good sleep doc who started me on them and they helped a lot, very quickly. I take a somewhat high dose (1800 mg each night) and it doesn't totally eliminate the RLS every night but makes it livable. I asked her about Pregabalin and she was not a fan; first because of weight gain but also because a couple of her patients had other problems with it like "brain fog" and dangerous clumsiness (one of them fell down the stairs). I have avoided (thank goodness) the main RLS drugs because all of them made me throw up about an hour after taking them, which didn't exactly help me sleep! Only later did I learn about augmentation problems and was glad I hadn't kept on with them. I think if my RLS augmented I would have REAL trouble just living decently.

I did have one thing happen with the Gabapentin: I was in the hospital for unrelated things -- a chronic intestinal issue (auto-immune). To combat nausea I was given a pretty low dose of oxycodone (2.5 mg daily as needed), which worked well and didn't cause addiction problems because it was a low dose. But as with many people, the opioid actually stopped the RLS. (By the way, I've been told that for some reason hydrocodone works even better for RLS -- as does codeine -- though neither is anything like as strong as morphine or oxycontin. And a low dose can do the job if taken right before bedtime. But in the USA these days docs are fearful of prescribing any kind of narcotic because of the legal panic about opioid addiction. This means that people who really NEED an opioid for chronic pain or other issues have to jump through hundreds of hoops monthly). Anyway, since I was taking oxycodone and wasn't having RLS, I stupidly decided on my own to just stop taking Gabapentin without mentioning it. No need, I thought, gabapentin isn't a narcotic! Things were OK for a week or so and then I began to get sicker and sicker -- sweats, trembling, REALLY awful RLS (in arms as well as legs), no concentration, horrible depression, insomnia, constant nausea and diarrhea. Turned out I was going through Gabapentin WITHDRAWAL from stopping cold turkey! I had thought withdrawal only happened with narcotics. It was my own fault for just stopping it without consulting my doc. I got a good hard lecture about messing with ANY drug that affects the Central Nervous System, which includes many non-narcotic drugs; doses should never be increased or decreased suddenly and changes need to be monitored and tapered. I found both Gabapentin and Pregabalin in the CDC list of drugs that can cause withdrawal. My doc then DID monitor my slow, careful return to Gabapentin but the withdrawal/ return affect, which was around 2-/2 months, was BRUTAL -- I've had depression all my life but nothing like this -- I felt suicidal and truly disabled with the other symptoms.

But now I'm back on Gabapentin, 1800 mg/bedtime, and it keeps the RLS to a low level. A couple of nights a week I have some RLS and because I don't want to raise the dose I do this: at bedtime I briefly spray (with shower head) hot water on calves until legs are hot; then smear with epsom salt gel (or any magnesium oil will work); then wrap my calves with Ace bandages -- tight over large upper part of muscle but not so tight over lower part because it cuts off circulation. By then I can usually get to sleep with no problems. I sometimes also use one of those electronic leg massagers they give to diabetics. And I'm NEVER going to mess with any dose without medical monitoring again.

Also I've learned to avoid antihistimines (I live in area with lots of junipers) and anticholinergics. They bring on RLS like mad. Instead I use a nasal rinser when juniper season arrives.

But in any case -- boy, I hope you find something that helps. Your situation sounds miserable. It's hard to explain RLS to someone who doesn't have it, but it can have an AWFUL effect on life (as everyone on this site knows) and you have other troubles too. Before I started Gabapentin I was stretching, walking, massaging, etc. for up to to 6 hours a night before I could get to sleep...it was ruining my life AND my marriage. Best wishes and lots of sympathy from me!

[SueJohnson in reply to wigglecat]

There's no reason not to switch to pregabalin. 300 pregabalin would equal 1800 gabapentin and you can take it all at one time which is more convenient. The side effects your doctor mentioned can occur on either one. It's just a coincidence that they occurred on pregabalin, although it is possible for side effects on one to not occur on the other and vice versa so if you did switch and got one of them, you could switch back. As far as antihistamines allegra, claritin and zyrtec are safe for RLS.