RLS and medicine

[Johsschmidt]

Dear all, regarding RLS and medicine. How long will it take before Madophar is out of my body so I can start it again? . you do not need to write that I should not take Madophar or sifrol. for me it has worked best. when I get augmentation I switch to Oxycodone until I can take the other one again.

[ChrisColumbus]

Huge sympathy for you, but while I understand why you don't want to be told again that you need to get off co-beneldopa (Madopar) and pramipexole (Sifrol), just reading the Bio in your Profile shows that your efforts to fight DA augmentation by swapping back and forth simply aren't working. You write that you are constantly tired, your mood is poor, you can't work properly...

IF you tried both gabapentin and pregabalin for weeks following guidelines exactly as recommended by people here like Joolsg and SueJohnson - after weaning off DA's very slowly - and they still didn't work for you, you need to look at low dose opioids. The DA's have probably damaged your dopamine receptors.

Please read this:

healthunlocked.com/rlsuk/po...

[Johsschmidt in reply to ChrisColumbus]

I've had it for 35 years, I've tried everything and Gababentin my body can't stand. No one can say for sure what is right, and all medicine has a price, no matter what. Those are the facts. my question was when can I take Madophar again

[ChrisColumbus]

Please also download and read this guidance on DA Withdrawal recently added to the RLS-UK site. I know that you're in Denmark rather than the UK but the principles are the same:

rls-uk.org/_files/ugd/b0a19...

[SueJohnson]

The half life is one an a half hours so it should be out of your system very quickly.

If oxycodone works, why not stay on it?

[Johsschmidt]

I am nervous about taking oxydone for a long time as I fear an addict. I also think the day is hard to get through until I have to do it before bed? damn disease

[Joolsg in reply to Johsschmidt]

All drugs for RLS are needed For LIFE. Opioids do NOT cause addiction or tolerance unless there is a history of drug abuse.

Dr Winkelman's opioid register was set up for this reason. He has just spoken at a webinar and he explains all about the augmentation process, how to get off Dopamine agonists and why low dose opioids are safe long term and do NOT cause addiction.

I came off Ropinirole in 2016. I was on 25mg Oxycontin and 150mg pregabalin for 5 years. My RLS was still very severe.

I switched to 0.4mg Buprenorphine and I have no RLS. Ever. It is wonderful.

I am not addicted to Buprenorphine, I don't crave the drug. I don't get a high. I've stayed on 0.4mg for over 3 years. No increase. No loss of tolerance.

Here's Dr Winkelman's talk.

Do listen to it. It's absolutely fantastic and explains everything.

youtu.be/h5Hyhmxli54(Not working as expected?)

[Johsschmidt in reply to Joolsg]

Hey Joolsg. my doctor has agreed that I start with 0.4 mg. Buprenorphine (Temgesic) what time of day do you take it? Do you have any advice, experience? Thanks❤️🙏

[Joolsg in reply to Johsschmidt]

Brilliant news. Are you off Ropinirole and Madopar yet? You still MUST get off all dopamine agonists because, while they're in your system, they will over excite all your D1 receptors, which will cause severe RLS which breaks through all other drugs.So. If still on Ropinirole, definitely reduce slowly by 0.25mg every 2 weeks.

Start Temgesic at night. Dissolve under your tongue.

It can cause severe nausea for the first 2 weeks, so use zofran or cannabis.

I used 0.4mg, but had breakthrough RLS at 7 to 9 pm the next evening. As Buprenorphine has a 25 hour half life, I decided to split the dose to make it last longer, instead of increasing the dose. I cut my pill and take 0.2mg at 9 pm and 0.2mg at midnight.

You will know straight away if it works.

If you're still on Ropinirole or Madopar, unfortunately, you will still get withdrawals as you reduce, but they won't be as severe. But you need to get off them completely.

Buprenorphine will help reduce the worst withdrawals, but won't stop tjem completely. So stay on 0.4mg Buprenorphine until off all dopamine agonists and then you can see if you need to increase the dose.

[Johsschmidt in reply to Joolsg]

I've actually been off madophar for 7 weeks, but also a bit last night to get off oxycontin. I was told that I had to get off of it first before starting the other one?

[Joolsg in reply to Johsschmidt]

You just make a straight swap from Oxycontin to Buprenorphine. That's cruel to make you go through Oxycontin withdrawal for no reason. I stopped Oxycontin in the evening and started Buprenorphine the next evening.

[Johsschmidt in reply to Joolsg]

I am so grateful for you helping me with that! I will do that! thank you very much! It's hard work

[Johsschmidt in reply to Joolsg]

my first night on 0.4mg, off Madophar and off oxycontin. it has been too good to be true :)) am excited to see how my day will be until 21 where I have to take it again. Hope the next night is just as good, because then I'm very hopeful. That's a good start!!

[Joolsg in reply to Johsschmidt]

That was exactly how I felt. I woke up after sleeping 8 hours with zero RLS for the first time in 10 years.I am so pleased for you.

I kept waiting for my legs to start. They didn't..3 years later, I'm still on 0.4mg and still ZERO RLS.

I did get severe nausea, but used cannabis for 10 days and the nausea stopped.

Then, after 3 weeks I developed Opioid panic attacks, so I added 50mg pregabalin, and that stopped the anxiety/panic. I reduced down to 25mg after 3 weeks. I still take the small dose of pregabalin as it helps sleep.

I'm so pleased Buprenorphine has worked for you.

Please talk to all the doctors you know.

In the UK we are trying to get clinical trials of Buprenorphine, so everyone can try it. We're also trying to get dopamine agonists banned, and used only in end of life scenarios.

In Denmark and Germany, doctors favour levodopa, which is the worst possible drug, with the highest rate of augmentation. Hopefully, your doctors will stop prescribing it after listening to you.

[Johsschmidt in reply to Joolsg]

❤️🙏❤️🙏❤️

[ChrisColumbus in reply to Johsschmidt]

While I understand your desire to avoid addiction, as you'll have read in the opioid piece that I linked earlier "low dose opioids are highly effective and do not generally lead to addiction or tolerance if patients are adequately screened and monitored. The Massachusetts General Hospital Opioid Study shows that long term, low dose opioids used in RLS do not lead to an increase in dose over long periods of time."

[Joolsg]

I think you're in the wrong help forum.This group follows latest research and treatment. Madopar hasn't been used for decades because it has the highest rate of drug induced worsening.

The theory that staying off Madopar & trying drug rotation therapy will allow your dopamine receptors to 'settle' is a very dangerous game. The top RLS doctors in the USA, who see thousands of patients a year, are very clear. These drugs cause permanent, irreversible damage to the brain. Some people develop anhedonia, others develop irreversible DAWS.

Gabapentinoids do NOT work while you're taking dopaminergic drugs.

So, my advice will be to get off Madopar permanently, and switch to a low dose, long half life opioid permanently.

[Nikos64]

In complete agreement with everyone here. DAs are the absolute worst drugs for treating RLS. I can’t believe they are not banned as an RLS treatment.

I went through absolute hell while I was on these drugs and especially getting off them. I’d rather have a fork jabbed in my eye than to take them again.

For severe cases of RLS nothing beats low dose opioids and gabapentin. Until a cure or a better drug appears this is a gold standard treatment.

[Johsschmidt]

I would like to send you all a big and loving thank you for your input. I am going to see my doctor on Wednesday and will argue for your knowledge in the field. it sounds promising. luckily I have a fantastic doctor who only follows the guidelines and recommendations that are in Denmark. I am sure she is with me as I have never had a tendency to abuse. now I just need to get my augmentation to go to bed at night so I can get further down the Oxycodone. Best🙏

[Birdland]

Your question is a difficult one. I was on a DA for 16 years. After a long and brutal withdrawal I felt the drug was out of my system in about a month, BUT, then came dealing with the damage left behind. After 3 years off Ropinirole I finally feel less effected by it. Although I still feel I will never return completely to the person I was before I started this horrible addictive drug.

[Merny5 in reply to Birdland]

Im with you Birdland. I haven’t ingested a DA in about 3 and a half years and I get the feeling that I will never return to my old self! These drugs are horrible!

[ChrisColumbus]

There is a Danish RLS site, but they unfortunately largely continue to promote dopamine agonist treatment - including Madopar 🥴- but they do seem to recognise that recent studies have shown that gabapentin and pregabalin may be a better first line treatment:

rls-danmark.dk/

Generally, you'll get better and more up-to-date advice in *this* forum.