RLS xx76

[RLSxx76]

On neupro patches not doing anything for my rls having another bad episode now god I'm at the end of my tether now can someone advise don't know what to do anymore

[Madlegs1]

What on earth are you doing on Neupro patches? You were on Pramipexol and were warned not to take any dopamine meds such as Rotigotine/ Neupro.

And here you are , suffering torture for going from one hell straight to another.

Why oh why didn't you come back to us when your doctor changed your medication?

I'm sorry for giving off to you- it's your benighted doctor who should be listening to this.

Sue gave you great advice a few months ago.

If you are serious about getting out of this hell hole , then go back and heed her advice.

Type in "Neupro patch and augmentation " into the search button on this page and you will get the full run down.

I'm sure Sue will come on here as well with her usual incredible patience and guide you back to safe ground.

I'm so sorry that you are in this situation,due to the utter incompetence of your medical advisor, who obviously doesn't care enough about your wellbeing to even keep up to date with modern medical advances.

Has he a bell jar of leeches in his surgery?

That figures.

Again ,I apologise for being so ascerbic, but I'm up in the middle of the night here in Ireland, suffering dreadful fizzies after an ankle operation, and I really don't know what's going on. I'm scared ,as you probably are, --- it's an awful place to be.

To have a body that doesn't act normal, but reacts to stupid things that don't seem to affect normal people.

It can be a lonely and desperate place.

But you are not alone, you will get through this phase of your life, and you will sleep through the night once again.

Can you get codeine in any form? Take some to try and get some relief.

You are going to have to reduce the Neupro patch-- someone else will advise on exactly how that can be done. I'm not sure if it is a type that can be cut smaller.

Good luck.

💚🍀

[SueJohnson]

I agree with Madlegs !!!

You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Since it has been awhile since I gave you this advice, I'll give it again.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off Neupro or ropinirole although it won't be fully effective until you are off Neupro or ropinirole for several weeks and your symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

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. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[Joolsg]

How long did you spend on Ropinirole and Pramipexole? You said in previous posts that Ropinirole gave you Oedema and Pramipexole made you sick.Were you on them for longer than a month???

I only ask to make absolutely sure your diagnosis is correct.

If you were on Ropinirole and then Pramipexole for months and now Neupro for the last 5 months- you will be experiencing Augmentation.

Did the GP warn you about augmentation and Impulse Control Disorder?

If not, you should submit a written complaint to the local health authority and the RCGPs.

How long have you been on the patch? 5 months ago you were advised to get off all dopamine agonists and Neupro is another dangerous dopamine agonist.

Now is the time for you to take control. Your doctor clearly knows nothing.

Start by reading the RLS-UK website.

Then read the Mayo Algorithm and the new American Academy of Sleep Medicine Guidance.

There is a new book on RLS that is quite easy to read. Written by Dr Andrew Spector. Available on Amazon.

Learn all you can. Become your own advocate.

And follow the advice set out by SueJohnson.

[Simkin]

I can sympathise. I had years on pramixepole until I suffered the hell of augmentation & my doctor then put me on neupro patches with the same disastrous result.I honestly think my GP at the time was doing the best he could for me as some years back little was known about augmentation & he was following the advice he had been given.

I thank God after years of hell I was told about this forum.

I can honestly say I think this forum saved my life & the simply wonderful advice from Sue & Joolsg & encouragement from others, plus a marvellous GP, I have come through all that suffering and I am RLS free with low dose buprenorphine.

Good luck.

[SueJohnson in reply to Simkin]

I am collecting names of doctors who are knowledgeable or willing to learn and especially ones that will prescribe buprenorphine. It would be great if you could give me your GP's name.

[Simkin in reply to SueJohnson]

Sue my GP says he has learnt everything about RLS because of me being his patient.I think I mentioned he has just given a talk to the other doctors at our Practice on RLS.

I do need to check with him that he would be happy for his name to be put on a public list.

I know Julesg lives in the UK but am I right in saying you live in the States?

[SueJohnson in reply to Simkin]

That's fine. Yes I live in the US. It wouldn't be public. I would just give his name to someone else who lived in the same area if they complained about their GP

[davchar23]

I can only advise you to follow the words of Sue J, Madlegal, Joolsg and others on this crucially important forum! It may be, like me, that pregabalin (or gabapentin) did not solve my RLS problems and so after suffering, as you are, with augmentation I had to persuade my very patient and progressive GP to prescribe a low dose opioid, buprenorphine. Then and only then because I had followed the advice put forward by Joolsg and others did I retain my sanity and have blocked out RLS. My buprenorphine dose ( "weekly "patches) is currently 10mcg/hr

I hope you can get through augmentation quickly (it could take several weeks) but please stick with the guidance from this site's experts!

Good luck!

Davcvahr23

[SueJohnson in reply to davchar23]

As I said to Simkin I am collecting names of doctors who are knowledgeable or willing to learn and especially ones that will prescribe buprenorphine. It would be great if you could give me your GP's name.

[davchar23 in reply to SueJohnson]

Sue,

I am sorry but whilst my GP has been especially helpful and patient he is still very cautious on the use of opioids for RLS and I do not want to put him forward in any way that might cause him to rethink his position. I did ask him a direct question about how he would in future prescribe for a new RKLS patient and of course he said he would follow NICE guidelines. He will only prescribe buprenorphine if advised by a neurologist. I tried to discuss the dangers of DAs with him and the discussion was "very short"! Therefore the only route to follow on this is through consultant neurologists.

Please keep up your excellent work and all the best for the festive season and 2025

Davchar

[LegJimmies]

Please don’t use Neupro patches or any other Dopamine Agonists. The side effects of impulsive control are terrible and the withdrawal is terrible. I went through this about 8 years ago.

[Bantamdyno]

I'm still surprised when infrequently I now get rl, that giving the pain points a good rub with a roll on deoderant in the middle of the night it stops rls🤔