Originally Posted by MAT52

Hi Enbloc. Thanks for your very helpful and considered response. My thoughts now are that these results came from a print out made before the others were back from the lab so it must have been the immunoglobulin ones (CSF and serum blood) ones which the neuro was referring to I think as there are some blanks on this print out I notice.

Re CRP and ESR. The ESR is used to monitor my RA and was up at 70 before I started Prednisolone. I had my bloods done again two weeks later - having been on 20mg for ten days and it had come down to 18 - corresponding exactly with the nerve pain (absence of) although the horrible creepy sensory stuff continued on but the throbbing, burning pain went out of it. It is now rudely back and I'm guessing my ESR will be back up after another week at the lower dosage. So it's the one blood marker I get taken which accurately reflects the way I'm feeling always - with a few days delay on either side or more as it is slower to respond than CRP.

My CRP is only taking occasionally but was up at 160 when I was in hospital on two occasions recently. This was because I had pancreatitis as an allergic reaction to Imuran. Otherwise it usually sits in the mid teens whatever my ESR is doing. Apparently this discrepancy is pretty unusual and is only found in Lupus or Vasculitis. It was down at 2.5 on Monday.

I'm awake in early hours now with my peripheries feeling as if they have been dunked in acid. So I've decided to go back up to 15mg again today as have a very busy weekend ahead. I'm 100% certain that my neuropathy is inflammatory it's just a question of how to get a diagnosis and treat it at source really.

My neuro has spoken to my rheumy now apparently. I did suggest to him that I might try IVIG but he said he'd never had a patient try IVIG for a rheumatic disease before although he has quite a few patients who take it for inflammatory neuropathies. I suppose the stumbling block would be to get NHS funding for this if I don't have anything showing in my blood or CSF. It may set a precedent and they wouldn't want that in the current cash strapped era.

I would far rather be allowed to try IVIG, a more natural blood born product, than keep thrashing about juggling steroid doses or risk a new immunesuppressant. But Cellcept might be an option for me next I'm guessing - if they think of it themselves. I'm not suggesting anything more to these guys because then I feel I've betrayed my body wheh I have yet another allergic response!