What could this be?

[Teezie]

Generalized lymphadenopathy, fatigue, weakness, headaches, joint and bone pain, tingling in hands and feet, rashes, livedo reticularis, hair loss, night sweats, excessive sweatng, brain fog, 2 1/2 pound weight loss in 2 wks and lots more. Recently diagnosed with SLE and on 10mg maintenance dose of prednisolone. Having regular blood tests but some concern over RBC, each test shows they are growing ( macrosytosis ). Liver function fine, vitamin levels etc are fine, consultant ref me to haematology yesterday for a groin node removing which has grown to 4cm by 3cm ( had previous biopsies, neg for lymphoma ) and a bone marrow biopsy, said it could be associated with a rare disease of some sort, but what? Any help would be great.

[Teezie]

Hello Paul, i am sorry for the delay in responding, i thought it best to put some of your suggestions forward to my consultant before i replied. I am only on a maintenance course of steroids at this present time. Because of the new issues with my bloods (macrocytosis), he is reluctent to put me on higher dose of steroids as they may mask my other health issues. He has requested a bone marrow biopsy as he has ruled out common possibilities such as, alcohol, drugs, environmental factors, my liver is perfect, i am not b12 or folate deficient at this time. He will not discuss other possibilities with me, thats for haematology, but any clues as to what he could be looking for would be great. As far as my lymph nodes are concerned, he has had enough blood off of me to create my own blood bank!! There is no evidence of infection, either viral or bacterial. His concern is the fact that i am losing weight, developing new nodes and my existing ones seem to increase in size slightly, every time i see him. According to him, even though my steroid treatment is only a low dose, the opposite should be happening. Any help would be greatly appreciated.

Thankyou

[PaulMD]

Hi there.

I believe that your SLE may still be undertreated given the various symptoms that you are still experiencing.  You should discuss with your doctor regarding a possible increase in your steroid doses, or possibly for some, the initiation of stronger immunosuppressive therapy.

The enlargement of the lymph nodes are indeed perplexing since this is usually not part of the SLE syndrome.  I scenario that I can think of is that you could have been exposed to some virus (CMV or EBV) that may have caused this lymph node enlargment.  Given your immunosuppressed condition (due to the steroids), I belive that you are susceptible to such infections.

Regards and God bless.