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Includes Expert Content
butterfly rash...Dr V???????????
leecat41 posted:
Ok, my rheumy says that he first thought that my rash was the butterfly rash associated with lupus but now that there are bumps, he doesn't think so anymore. I have not had a positive ANA but have had many of the symptoms of lupus and he's been treating me for "lupus suspect" since 2010. Now, it's not? I've been diagnosed and undiagnosed since 2004. When can I expect to actually know what is going on with my body? I know that something isn't right. Just when I had accepted that it was lupus he goes and changes it?

Right now I have so much going on with my body that I just want to lay down and not get up anymore. This is so frustrating! And this neuropathy is the pitts! I can finally take a deep breath again (pleurisy gone) but everything else is falling apart.
To do what is right is not always easy, to do what is easy is not always right.
R Swamy Venuturupalli, MD, FACR responded:
Cutaneous lupus can present in many different ways. Acute cutaneous lupus or lesions that are seen with sun exposure are most likely to be associated with systemic lupus. Subacute cutaneous lupus is usually associated with a positive SSA or SSB antibody, and chronic cutaneous lupus (including discoid lesions) are the least likely to progress to systemic lupus. Without knowing the details of your case it is hard for me to know if you have lupus. I have definitely seen lupus rashes that are raised or bumpy in the malar distribution. A skin biopsy with immunofluorescense could be helpful to determine if your rash is from lupus. A dermatology consult might be helpful.
leecat41 replied to R Swamy Venuturupalli, MD, FACR's response:
Thank you. I did see a dermatologist. He didn't run any tests. He just looked my face and said take this and handed me a prescription. It hasn't helped. My Rheumy told me the very fist visit that he was testing to see if I'd ever been exposed to parvo because it could cause the bumps like what I have so he must have just forgotten. He did come back and say that I had. But the bumps have always been there.

If by lesions you mean those blistery little bumps that come up when I go out in the sun, yes, I definitely have them. But they come up on my face and arms and neck so far. Not just my face. I don't know what those tests are. But you can bet I'll be asking about them now.

Thank you for answering. I just get really frustrated sometimes.
To do what is right is not always easy, to do what is easy is not always right.
lisatru62 responded:
I never had a butterfly rash on my face but had a rash on my arms and legs. It would come and go for years. I also developed cysts over time. One in my neck, one in my thigh. I eventually had the one in my thigh biopsied and was told it was discoid lupus.

Further testing determined I had systemic lupus. My symptoms and rashes came and went over a 15 year period while I complained to my doctor that I didn't feel good. I guess if given enough time without treatment discoid lupus can turn into systemic lupus.

Keep at them and see a dermatologist, get a biopsy, they might get better information.

Good luck

leecat41 replied to lisatru62's response:
I have had "cysts" or "tumors" removed from just under my skin on three different occasions and still have more. They only tested them for cancer as far as I know.

I do get those raised, filled blistery type bumps on my face and arms and such.,

I just wish we had more to choose from around here. I'm tired of feeling so bad and not knowing anything.

Thank y'all for supporting and answering. At least I know i am not alone.
To do what is right is not always easy, to do what is easy is not always right.
love2lol2 responded:
There is a site called . It's a support group I ran across while searching WebMD. Christine Miserandino is an awesome person who has Lupus herself and has made quite a few appearances talking about Lupus. This support group is a gr8 one for those of us with hidden illnesses.

I hope you find help soon!

With Lupus

WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
at work, or with family
and friends.
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