Hello, I am new to this thing so Im not too sure what I am doing here. Anyway, in August I was diagnosed with SLE. I was having major issues with my joints hurting. A different bone would hurt every other night. It was getting quite annoying. Not too long after I went to the ER in so much pain. I thought I had conjunctivitis....well I had shingles. Oh and that was painful. This was in September. Well, they gave me valtrex and tobradex. It started to go away! I was starting to feel better but then it came back again. This was right after I got off the eye drops. This time it was in my cornea. I cant understand why this kept happening. I am currently on valtrex permantly so I dont go blind. However, no one seems to have an answer as to why this keeps happening. My father asked me if I had HIV because that is what he associates Shingles with....when I asked my Eye Doc, he said not to worry about HIV. I also asked my Rheumy, and she said its uncommon to have Lupus with HIV but if it made me feel better go take a test. I am actually deathly afraid. But in any event, is Lupus the same as HIV? I have tried looking up all over the internet but I get a mix of things! Does anyone know? Its making me sick to my stomach all the time!
Lupus is not the same as HIV. HIV is a virus, Lupus is not contagious. Lupus means your own immune system is attacking parts of your body. If you are on medication for the Lupus, however, your immune system could be weakened, leading to shingles and other infections.
Sit down your rheumatologist and make her explain what Lupus actually is and how it's affecting you, as symptoms can vary from person to person.
If you get a hold of the Lupus book by Dr Wallace that will help you to understand a few things better. He does discuss in there the fact that there are no known cases of HIV in Lupus patients, and that, statistically at least, it would suggest that Lupus patients are 'immune' from HIV.
I would take the advice of janewhite1 and sit down with your rheumologist. The only thing I would add is-Bring your Father with you!
Also, I have had shingles many times as well and DO NOT have HIV-I was tested because of other symptoms Not just because of shingles. It's true that having shingles more than once is not common BUT if your immune system is messed up it can happen. Many things cause this-like Lupus. Relax. Take the test if it makes you feel better.
Thank you guys so much. It has been so frustrating going through this. I havent felt the same since August and it is very hard to change your whole life in only a few short months...not to mention quitting smoking. lol. I will attempt to talk to her again...without my dad though... I live in Fl, and he lives in NY. I think I would have been fine with the whole Lupus thing, but it is the shingles Im afraid of. Hopefully I dont sound crazy, but the mind reads so much and it makes my thought process foggy. Thanks again.