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?)

[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.