[lauralee77]

It's really strange, but my lupus doesn't seem to respond to steroids. This is scary because I just had a bad flare (or so they are calling it) and was in the hospital with raging fevers. I had the fevers for 5 weeks. They gave me 150 mg of pred, but it didn't make my high fevers go away. Yet there were other lupus flare signals. My platelets were low, I was anemic and required blood, my liver and spleen were slightly swollen, I was leaking lots of protein from my urine. The other issue is that my white blood cell count was and is really low. All this happened so suddenly. I am waiting to hear test results today from the doctor to see where my WBC count is as well as if I am incurring any kidney damage. If I am, the doctors don't seem to know what to do because any immunosuppressant they give me is going to lower my WBC count more.
I've also never had the typical lupus symptoms.....no rashes, fatigue, fevers (until the high ones recently), organ damage, . The main thing I've had is chronic pericarditis and anemia. My complements and other blood tests show lupus, but if that is the case, why am I not responding to prednsione. I was also on Imuran for 3 years which they immediately took me off of in the hospital.
Do any of you struggle with the prednisone not working or the docs being baffled by your symptoms of lupus and what to do? It's a very scary feelilng when they don't know either. I like to think sometimes the body corrects itself without the meds. I'm relying a lot on my faith and positive thinking.

 

[Maia]

I guess, that at least you know now that prednisone doesn't help...

One option that sometimes helps people is plasmapheresis, it's not usually a first or even second choice for treatment but in your case it seems like it may be an option to consider or ask about.

Do you know what all has been ruled *out* before diagnosing lupus? Things like all the different kinds of tick borne illnesses? Treatment with prednisone and immunosuppressants are not the thing to do if that is even part of the problem. You may want to get a second opinion, with another rheumatologist in a different practice and see if there was anything that wasn't "thought of" before... If nothing else, this would help to reassure you to some extent that everything that could be done, has and/or will be done.

I have had fairly typical lupus symptoms but several things popped up a few years ago that didn't fit in (headache, chronic sore throat, irregular heartbeat, etc.). I ended up eventually getting a Lyme diagnosis/treatment but unfortunately kept my lupus diagnosis too.

Interestingly, my dog tested positive for Lyme recently too & just completed treatment. The vet warned me that dogs can develop kidney issues from Lyme too - Lyme nephritis!

I'm so glad your fever broke & you are feeling a bit better again. It very well could be lupus, and you are just one of the 1,000 faces of Lupus. But best to make sure all other possibilities have been truly ruled out...