Originally Posted by MAT52

It’s a hard one isn’t it. I mean I’m sanguine enough still to know that there are treatments that may have helped me a lot and IViG is the main one but Rituximab is another - and I nearly got this, but then they withdrew the suggestion quickly when they read my neurologist’s letter saying that no there would be no effective treatment for my SFN unless it was effecting my CNS.

I told the UK specialist that I had sat on a neuro ward waiting for my lumbar puncture while 3 people had their infusions for rare forms of CIDP - describing to each other and to me, symptoms really a fraction as severe as mine. She looked very doubtful that this was so in the UK - but I’m no liar! And furthermore they had all been having infusions for years! So Scotland must have been different in its approach at some stage but all is now focussed on the more common diseases such as cancer and diabetes and money is being set aside to tackle mental health. No disrespect to any of these plans for health expenditure of course but prioritising these comes at a price. And people like Joanna and I are the price sonit seems. And I think the UK expert knows this and was conveying it to me as diplomatically as she was able to. And was more honest than my NHS team in Scotland about the money but also said in her letter that at least some of my numbness and other stuff is due to existing damage that can’t be undone. And I do feel bitter and angry about this yes!! Maybe if I’d been offered Cellcept a lot earlier this wouldn’t have occurred. Certainly I felt immediate benefit from Imuran but it gave me pancreatitis as you may recall. Now the pain is mostly gone and I have numbness which I’m sure could have been avoided if I hadn’t suffered a while 18 months of excruciating nerve pain.

Steroids helped a lot too but they weren’t a long term solution and the wretched little rheumatologist I saw in Fife said my antibodies and Schirmers were all fine so I didn’t have a connective tissue disease at all and he took me off steroids and just left my nerves to ferment! Six months later in another hospital bingo! ANA a strong positive, IgGs raised, lip biopsy 100%.

Dr P said it was a real shame I didn’t have my RA symptoms back as RA would meet the criteria for Rituximab whereas she can’t get this anymore even for seropositive patients so I agree that AS would be a better bet for Joanna than Sjögren’s for accessing biologicals. But it would need to be confirmed as active and erosive. And I doubt that your Birnbaum could persuade a UK hospital trust to administer IViG even if Birnbaum spoke to her UK rheum or neurologist.

This conversation has at least galvinsised me to get touch with my neurologist next week. I can’t just keep turning increasingly numb while the doctors keep telling me that there are no more treatments for me now. I think the Cellcept did work on my joint pain as my groin pain has gone and not recurred and pain in knuckles too. And my hypertension did improve for 8 months so the blood disappeared from my pee. So perhaps they are just using it as a deterrent against renal or other organ involvement as they seem to want me to stay on it at the highest dose.

But my neuro symptoms are definitely progressing without a shadow of a doubt as I describe in yesterday’s post here. I feel like the fall guy