Hmm. Definitely a difficult case!! So sorry you are going through all this mess.

I have to ask a couple questions: Do your symptoms increase in accordance with your CRP & SED rate? I mean, is your nerve pain worse when it's higher? Do any other symptoms change when it's higher? if so, which ones? Is your swelling only present when your levels are high?

Before you go, you need to document all that has happened in a timeline like fashion to provide your neuro. It will be easier for him to review it this way...and see each step in the order it occurred.

I'd definitely say the Imuran is OUT. If your symptoms correlate to your CRP & SED rate, then I'm guessing you feel a little better now since the levels are down, right? Is that why you have to wait for the levels to be higher and inflammation to be present (with swelling)...before you will get a chance at bigger guns?

Without knowing the answers to the questions, I'd ask the neuro for 'big gun' treatment. You may have to wait (due to NHS), but he needs to have it noted that it is to be used next time this flares. I know that stinks, but I doubt you'd be able to get it when your levels are normal. But at least this way, you will be armed with a treatment (like Rituxan or IVIG) when the time comes. Personally I'd go for the IVIG to help modulate the immune system. I also think it would be easier to prove to the powers that be with your skin biopsy showing SFN and CRP/SED rate showing significant inflammation. I also think Rituxan carries more side-effects (and you don't tolerate things well). Not that IVIG doesn't carry it's own risks!!