EMAIL from Professor Richard P Allen John Hopkins

[Shumbah]

Dear Mrs Howard

I was sad hearing about your travails getting treatment for RLS. Yes buprenorphine is one of the opioids used for refractory RLS with reasonably good results. It tends to get used after methadone is tried, but it is very effective in many patients. We have long term experience with methadone for over 10 years and less with buprenorphine, but no reason to think it will cause problems at the lower doses used for RLS. As you described here.

As you know the opioid abuse problem complicated opioid treatment of RLS but it is recommended for those failing standard treatments.

I am very glad to hear of your good outcome and the help you have provided others.

It would be helpful to the RLS community if you would share your positive results with buprenorphine with the RLSF foundations around the world, particularly the RLSF foundation in the USA. But also Australia and Europe. I have the link here for the USA foundation. Rls.org. They can direct you to groups in other nations.

I only wish we could get some minimal level funding to document the success with very low dose methadone and buprenorphine. We are working on understanding the science here. Particularly interesting are the relations to dopamine and iron.

Hope you continue to enjoy life

And stay safe in these difficult times

Dr. Richard P Allen

Prof, Dept Neurology

Johns Hopkins University

Asthma& Allergy Bldg 5B71c

5501 Hopkins Bayview Blvd

Baltimore, MD 21224

USA

Office: 410-550-2609

mobile: [phone]

fax: [phone]

email: [e-mail]

[Madlegs1]

Thankyou for sharing.

Just a matter of printing it out to pass on to our various medical attendants.

Especially the Sleep specialists and Neurologists.

Good luck.😎

[Shumbah in reply to Madlegs1]

I have 3 more

Dr Glen brooks

Dr Jeremy Hayllar

Dr Tim Amos

Shall I pop them up as

well ?

[Madlegs1 in reply to Shumbah]

Work away.

Sure, what else could we be doing with all this time hanging heavy?🥴🤡😷🤧🤕

Seriously, the more information and backup we have the better.

It is all part of our cunning strategy to take over the sickness control of the world.

Nothing can get in our way.

We will win against all odds.

On the beaches, in the air and on the land-- we are invincible.

Cough, cough - oh my head is aching, my temperature is sky high-- my rls doesn't matter any more-- get me to a ventilator! 😷😱🥵🗣️

Good luck and keep the sunny side up😎

[Parminter in reply to Shumbah]

Yes please!

[LotteM]

Thanks Shumbah, well done. And please do also post the other responses. Did you also write to dr Mark Buchfuhrer in California? I am sure he'll send a response. It will be interesting to see the the variety of responses.

[Shumbah in reply to LotteM]

Not yet Lotte

On my list 🙂

[LotteM in reply to Shumbah]

Good plan!

[Shir_11]

Thanks to Shumbah, after 40 years of torture with RLS and trying everything available. I started on a 5mg patch of Norspan which is Buprenorphine. You leave the patch on for a week at a time and it is a slow release. This is my second week and I am over the moon with the results. I can even have a glass of wine without hitting the roof. Let’s hope it the good results last.

[Shumbah in reply to Shir_11]

Wahoo congratulations

Evidence shows it will continue to work 😄

[bill54321]

Wouldyou please say something to support what RLS is. I have Physical Jerks. I am not asleep and dreaming them. I am a 40 year practice retired P.T. I am knowledgeable. I have done my own research. Any time Pre- or Post sleep levels are present, it triggers a PHYSICAL Restless leg syndrome .Italians found this more so in morning than later in day. My post sleep jerk, I get up and walk off and go back to bed without my meds.(FOR ME ONLY),(I am not recommending to others), I take minimum .5 mg ropinrole 1 hr before lunch, since I tend to dose afterward. I take minimum of ,5 mg ropinrole before dinner at 6:00PM. for the same reason. I take 2 of the .5 mg ropinrole at 9:45pm beforesleep.At that time,(Tis is a maximum of 2 mg of ropeinrole a day) ( With the night,I also take 2 of 300 mg gabapintine(Neurotine maker for nerve repair and seizures) (Horizon pills are 600mg and sometimes used for RLS) I do not take the Horizon. I mention this because many Docs don't know rhe difference. The is for USA ONLY .Again, My question, My RLS is classdified just that . THERE IS NO CLASSIFICATIN AND MEDICATION RELATED TREATMENT PROTOCOLS FOR AWAKE PHYSICAL MYOCONIC JERKS<>>>Your experience please!!

[wildlegs]

I've had RLS for over 20 years and have tried many different drugs. For the last 3 or 4 years I've been taking Tramadol and it's been working great for me I take 200mg - 100mg around 5pm and 100mg an hour before bed time. At around 5pm both my legs and arms start twitching. 1/2 hour after I take the Tramadol it stops. Ocationaly I still need to get out of bed and walk but most of the time all is good.