update weaning off Pramipexole/appt with specialist.

[Riversong]

After some months of gradual weaning off Pramipexole, down from 6 tabs of 0.088mgs to one - I had my appointment with Dr Chris Murphy Consultant Neurologist at the Alexandria Hospital Cheadle Greater Manchester yesterday.

He listened carefully to all my details, especially how dreadful the symptoms had been during the taper down. Like many users of the Forum, I had prepared myself with the latest advice and had a ‘plan in my head’ for the outcome I was hoping for from the Consultation.

Probably for the first time ever in my healthcare, I was asked what I would like to happen in terms of my medication and treatment plan, Patient as true partner in their care, a model talked about a lot in health care but not often seen.

I said that from my understanding of the updated Mayo Algorithm, I thought I was likely to have refractory RLS, and that the Gabaoentinoids may not to be effective. From information on the Forum, I felt Buprenorphine would be best, tabs as sometimes patches didn’t last the week, thanks HipHop.

I asked what his view was and he took me through the pro’s and con’s of drug options but agreed Buprenorphine was a good plan for me. He said he saw his role as one of educating medical colleagues, particularly in primary care about the severity of this disorder. He was of the view that while it was not life threatening it was ‘ life destroying’ in terms of quality of life.

I felt heard about this dreadful condition for the first time in a health consultation. RLS patients could not ask for a better advocate and we need many more like him throughout the country/ world and more resources like this available to all patients regardless of ability to pay for a private appointment.

Will do further updates as treatment progresses and particularly do some research on how we can prevent or mitigate the problems of ‘dry mouth reduced saliva’ that can be a problem for dental health on longer term opioids.

Not out of the woods but definitely seeing light ahead. Hugely grateful for information and support from this community and the kind through the night messages that mean such a lot when we feel alone.

I had the thought/wish that if RLS UK could identify a generous philanthropist who had RLS or experience of this dreadful disorder from family member there could be a fund set up so everyone who needed to see a Consultant privately could do so.

[Jellylegs61]

So pleased for you, Riversong! I live on the south coast of England, but am tempted to contact Dr Murphy following what you've said. I'm currently experimenting with Gabapentin after managing to wean off Pramipexole. Thank you for your informative write-up.

[SueJohnson]

That's terrific! Others on the forum have said he is excellent but your detailed description really shows he cares and listens to the patient.

Now I just hope it isn't red listed in your area and your GP will prescribe it.

[Joolsg]

That is brilliant Riversong.We need more neurologists like Dr Murphy.

[Munroist]

Thanks for feeding back. It’s great to know there are well informed and sympathetic Doctors out there. Good luck.

[Doped]

It sounds like you've struck gold there with such a caring neurologist. Thanks for the insights and the very best of luck going forward.