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Diagnosis And Treatment Dilemma: Need Help

Diagnosis And Treatment Dilemma: Need Help

Need help!!! I need treatment suggestions from anyone who has symptoms but blood work is normal. I have had symptoms off and on for at least 6 yrs. skin biopsy confirmed lupus (SLE or cutaneous- doctors cant decide because all of my blood work remains normal). also dx with sjogren's (elidel and restasis). I have the most patient rheumy (Neucks- Indpls). but at lose on treatment. on plaquenil which helps skin and some of systemic symptoms. tried methotrexate, imuran, read more

A MyLupusTeam Member said:

The best way is to treat each symptom as it appears. It's really the only way. As for blood work, with lupus it can and does give loads of false positives/negatives for many many things. It's the joy of the lupus. Stress can and does cause all sorts of lupus flares. Try to remain as stress free as possible. Just remember you aren't alone, we've all been through similar things. I hope you feel better soon!

posted almost 6 years ago
A MyLupusTeam Member said:

So they knew I had lupus because of my positive ANA and my symptoms but after years of lupus my routine lab work never matches how I am feeling my inflammation levels are always high even when I feel great my doctor treats my symptoms according to what I am telling her!

posted almost 6 years ago
A MyLupusTeam Member said:

I was in fantastic Lupus support group for 27 years there we several girls they never got a positive ANA over all the years but had organ involvement and other signs some of their drs would put a name to illness some not but still treat for lupus in the end.since Lupus you really just treat what it attacks it is same.

posted almost 6 years ago
A MyLupusTeam Member said:

Well everyone jump in on this, but i am going to tell here that I understand she wants the diagnosis we all understand that one to well, but although that may be a bit, prednisone is the medication for basically the connective tissue diseases. It is really the only med we have. It is just getting the level that will get your body to respond. Ya, easier said then done. After a while you will learn your lupus, you will, and a general range of the pred range needed for to help the doc along.
for six years I went through I will call a very wacky diagnostic period and then the lupus made it self so very clear and apparent. you said this was new for you, just want to say I am so very sorry, but happy you are on here : ) as for the time frame, I am also so sorry, on average it takes about six years before lupus is diagnosed just because the nature of the disease and the way the medical system is structured.

posted over 5 years ago
A MyLupusTeam Member said:

My blood work has finally became normal after 5 1/2 yrs. I still take my plaquenil, prednisone, and the benelysta infusions. I have TIA'S so my rhuemy said we will treat the whole lupus not just individual things. I am doing good so far.

posted almost 6 years ago
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