Good News!

[Ephemera]

Progress report, For the last 3 nights my husband has taken 0.4 Buprenorphine Sublingual Tablet and Gabapentin and after about 1hr of PLMD he is getting 8 to 10 hours sleep. For the first time in 18 months he is not pacing all night, feels better and we may now get to our Daughters Wedding in June!!

We want to thank everyone on this forum for your kind words of support and advice, especially Jools and Sue, without this forum I do not want to think about what may have happened. Whilst it is early days at last it is positive news. If you are in the UK with this problem please push your GP for a neurologist referral and tell them about this pill. We can literally say it is a life saver for us.

[SueJohnson]

That's great. So pleased for him!

[ChrisColumbus]

Brilliant news! Sue and Jools both have huge amounts of good info and advice, and its great to hear that this helped at long last! 👍🏻👏🏻

[Kakally]

🤗🤗🤗❤️

[Kaarina Administrator]

👍💪💪💛💛

[Simkin]

Wonderful news for you both. Under the guidance of Sue & Jools & very helpful advice of others I have had 7 consecutive nights with NO RLS for the first time in YEARS & YEARS taking 5mg of oxycodon and I too feel if this goes on I will be able to cope with the flight to Idaho from the UK to see our son.I am also on gabapentin but on the high dose of 2,100 which I want to now start lowering.

Out of interest what dosage of gabapentin is your husband taking???

[Ephemera in reply to Simkin]

Great news for you too. Husband is taking 1200mg Gabapentin at night. It is great to be able to start looking to the future and planning days out and holidays again.

[Simkin in reply to Ephemera]

Thank you. I am going to start at least bringing down my gabapentin dosage from 2, 100 to 1,200mg.

[Jumpey]

Brilliant news!

[Joolsg]

Delighted to hear that news. Enjoy your daughter's wedding in June.

[Joolsg]

I agree about Buprenorphine being a life saver. Like your husband, I was in a really bad way. My neurologist, Prof. Chaudhuri, initially refused to consider it. I had to push and send him lots of info. My RLS went from 36/40 to 0 overnight. Miraculous. Prof. Chaudhuri said he would do trials on Buprenorphine in the UK and if the results were positive, it would then be licensed for RLS. However, he needs £100,000 for the trials.

Money isn't available.

So if any of our forum members win the lottery, £100k for Buprenorphine trial would be very welcome.

[Simkin in reply to Joolsg]

I will bear that in mind if I win the lottery!!!

[Nanpat]

wonderful news and I sincerely hope and pray this continues for him.

I also had 3 miraculous months with this medication but then unfortunately it stopped working.

Good luck

[TeddiJ]

Fantastic!