Quote:
Originally Posted by en bloc
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!!
|
Thanks Enbloc. I should have made it clear. My CRP was up at 160 this time last week and then down to 17 on Monday. This is same pattern of the previous hospital admission three weeks earlier.
However on Monday my ESR had risen to 78 from 58 a few months ago so it's been steadily rising not falling. This makes them think that it is my immune system that is causing the inflammation. The only pain I suffer presently is nerve pain. I don't know if my ESR reflects inflammation exactly - but I feel it does whereas I don't think my CRP is affected by the neuropathic pain much.
My ESR is always high and I always have some nerve pain but as the pain increases in intensity so does my ESR. The only time it lowered to 32 was when the nerve pain was much less prominent earlier this year and that was after I'd been taking Naproxen for a few weeks.
Also it seemed to subside when I had flu and secondary pneumonia in March and when I was in hospital a month ago with acute abdominal pain. But it surged as soon as the acute pain/ infection diminished. It also surges/ flares up after any real exertion or travel and so does my ESR. I will do another chronological symptom list for these two appointment next week but I did explain this to the neurologist before and he noted that my ESR was the main blood test that is always pretty raised.
The nerve pain isn't the only neuropathic symptom by any means. I get flashes of pain in my arms and hands and cold wet sensation in feet and legs as well as a feeling of crawling as if I were standing up to my thighs in cold water with little crabs and nettles. This has gone on for so long I've almost got used to it now though so the jaw pain is the worst. I would really like to be offered IViG but this is the NHS and my serum immunoglobulin was normal in January. The pain in my mouth/ jaw/ nose is exactly the same as everywhere else and my dentist says it isn't thrush, isn't root or tooth decay and isn't dryness from Sjogrens as my saliva ducts are working well.
Thanks for your help it is much appreciated!
Mat x