Another Newbie here too

Hi again Sharon,

It's a pity that you aren't being treated with anything other than pred from time to time. I mean, obviously, I don't know your whole story so your docs may have a reason for not wanting to do anything else just yet. Maybe there really isn't enough to support the "lupus like and systemic" but still, it does make me wonder.

I'm also wondering, if you're ANA has been consistently negative - It can remain negative for a good while and on some patients (only between 2 and 5%) never becomes positive - anyway, I'm wondering if it might not be worth asking if a skin biopsy could be useful. Occasionaly a biopsy of unaffected, unexposed skin (for example from the stomach or buttocks) can clinch diagnosis. It is not sure, nothing with lupus is, but is worth trying.

As for the questions on bloods.... well no-one can really answer that. There is no "norm" in lupus. Some of us will have very high inflammation markers at times and others will barely rise despite significant inflammation. My rheumy can "see" inflammation around tendons when doing an ultrasound for example and yet I rarely have any inflammation markers in bloods. The only time I did was before diagnosis and at that time she told me that it was no way near high enough to be from an autoimmune disease - turned out she was wrong as other tests then revealed. Since then she listens to what I'm saying and uses bloods to monitor other activity but doesn't presume I'm doing well because inflammation doesn't show up.

hope that helps a bit,
Katharine