Thalidomide and RLS

[restlessstoz]

I thought I would just leave this information here in case anyone finds it interesting. My GP gave me a print out of the info. when I saw him last week. I was so impressed that he had not only seen it, but thought about me and printed it out to give me! It may be worth someone following up...

pubmed.ncbi.nlm.nih.gov/327...

[Hidden]

Very interestinhg

Thanks

[Joolsg]

Fascinating. Thanks for sharing this. It gives hope to those running out of treatment options.

[restlessstoz in reply to Joolsg]

Yes. I'm still going strong on Buprenorphine. It's been 12 months now and I dread finding that it no longer is effective. At least there are some things to keep up my sleeve.

[Shumbah in reply to restlessstoz]

Just to put your mind at ease ,I received a message from someone who has been on 2 mg of buprenorphine for 17 years no issues at all, I will be 2 years in October.

Feeling very confident.

😀

[restlessstoz in reply to Shumbah]

Wow Shumbah! That's quite an achievement... Let's hope we can achieve the same.

[1kferg]

I use up to 5mg of Ropinerole (as needed), zanaflex (muscle relaxant) and especially a cream (get at Walmart) to relax my legs at night. Also sometimes l need to use support socks for my pulsating and popping veins. Hope this helps.

[Whymelord]

Hi thankyou so much for sharing this information, can I say your doctor sounds a lot more caring and helpful on the subject than mine.the information is technical for me to understand but I do get the just of it.please keep us up to date.I do think that there is a treatment out there that will make a great difference to RLS.I do understand that Pramipexile for example was used to treat Parkinsons disease so its plausible that other medicines can do the same.

[Hidden]

Fascinating, thank you. As far as I recall thalidomide was originally a tablet to aid sleep so must target the brain somehow.I had seen that it had started being used for other well regulated purposes again.

Sounds hopeful or perhaps a spin off from thalidomide. Good that folk are trying.

[Jumpey]

Cheers for this.x

[Parminter]

So interesting, thank you for posting. A doctor who researches - that is sadly very unusual.

[Parminter in reply to Parminter]

Doctor Juliane Winkelmann has published with Doctor John Winkelman and Doctor Richard Allen, both of whom are luminaries in the RLS world. We should therefore take this article seriously,

[1Ginge1]

This is what the medical dictionary says: A sedative drug that was developed and used in Europe in the 1960s. Thalidomide was taken off the market when it became evident that it caused severe birth defects in babies born to women who had used the drug during pregnancy.Any woman within child bearing age should not consider this medication.

[restlessstoz in reply to 1Ginge1]

Yes. It's well known for that reason. In Australia too. It's used for other conditions though and successfully as I understand a lot of drugs are used 'off label' for things they were not originally designed for. The wonders of medicine. Obviously it's not suitable for women of childbearing age. Thankfully , I'm well over that if ever I needed to try it.

[Gmc54]

I'm guessing you're not in the UK.......🙂

[restlessstoz in reply to Gmc54]

No, in Australia. Why?

[Gmc54 in reply to restlessstoz]

My experience of our UK GP's is that they are very closed minded to anything that is out of the ordinary. I can't imagine any one of our doctors showing any initiative beyond the usual stuff they dole out.

[restlessstoz in reply to Gmc54]

Even here they're the same. My neurologist treated me for 5 years when I was augmenting and he didn't know about augmentation. I've been with my GP for 30 years and knows me very well. He saw me in the midst of a severe restless leg attack and I think it opened his eyes. I sacked my neurologist and haven't been back. Now my GP and I work together to manage my treatment together.