A wonderful GP

[Loopylegs]

I started seeing a new GP who started work in my local GP practice just before covid and she has been Marvellous, she's from South Africa and really listens to me and I've told her about the advice I've been getting here and she said that she is going to look further into buprenorphine being used here in Ireland as a treatment for rls. She has also referred me to a neurologist in Dublin who specialises in movement disorders who trained in the Mayo Clinic which I'm very excited about as she surely has worked with Rls patients in the States! I feel very Lucy to have found this doctor as most other doctors just don't take rls seriously with one actually telling me I need CBT because it's all in my head!! An update on my withdrawal from pramipexole, I think I am improving, I've gone from 1.5hrs sleep to 4hrs sleep, I'm on the 1200mg of gabapentin which I take in 3 doses of 400mg at 4pm, 6pm,9pm and last one at 12am along with 2 tylex (zapain). It has been 4hrs sleep for the past 3 nights, bed 12am, can't keep my eyes open, up around 4am then it's quite intense in the arms and legs so I stay up and move about, my house is very tidy! Then I lie down for an hour after lunch and I get anything from 15mins to the full hr and a bit before the rls wakes me, but I'm so positive! There's a definite improvement, I wake at night exhausted, look at the clock and think 'Yes'!! 4 full hours, it's better that winning the lottery! I think I'm getting the better of this horrible illness! Thank you all so much for the advice and guidance, I'll be 50 next month and life is looking good!

[Joolsg]

That is great news! I'm so pleased you're off the poisonous Pramipexole and starting to improve.It takes quite a while for the RLS to settle after augmentation and withdrawal and Drs Buchfuhrer and Berkowski and Winkelman ( top US experts) all say that many patients do NOT respond well to gabapentin or pregabalin after dopamine agonists because their dopamine receptors have been permanently damaged. In these cases, only opioids seem to help.

So hopefully, you will start to get more sleep. There is the possibility of increasing the gabapentin OR switching to Buprenorphine if it's possible.

I hope the neurologist is up to date. Even top neurologists in the UK who take an interest in RLS don't seem as up to date as they should be. They still resist iron infusions and are still under the illusion that dopamine agonists are fine.

As we now know from the post about Rosie, these drugs are responsible for at least one death. There will DEFINITELY be more, but no one will have joined the dots.

[Loopylegs in reply to Joolsg]

Thanks for all the help Joolsg, much appreciated, its heartbreaking to think there have been deaths due to rls and that there will be more sadly, until more is done among health professionals to highlight how dangerous this disease is and that prescribing DAs could be a death sentence.

[Madlegs1]

Do keep us updated on how you get on. Especially for Ireland.Thanks

[Madlegs1]

Just thinking there may not be a positive outcome here, if Ireland is lagging behind the rest of the world in allowing Buprenorphin to be prescribed as Jelbea? Discovered apologies if wrong person. Very recent posting.

.A doctor fresh from a civilised country like SA may not be aware of prescribing opioids here.

It will be an interesting story ,which I hope will come out well.

But ,I have me doots!🤔🤕

[Loopylegs in reply to Madlegs1]

Yes, it may be a hopeless cause but with it being a low dose she's hopeful that it might be allowed, all she can do is try, I was on to the pharmacist I used to work with and he told me to get the doctor to send the script to him and he'll have a look at it and see what can be done, but he doesn't think he'll be able to dispense it, but I'll keep u updated!

[SueJohnson]

That is great that you've found a good doctor and that things are getting better.

[Loopylegs in reply to SueJohnson]

Thanks Sue, and thank you for all the help & advice

[Jumpey]

Huge good luck. Right behind you .

[Loopylegs in reply to Jumpey]

Thanks Jumpy!