Posted 7/10/2009 4:17 PM (GMT -6)
Oh Amy, what a stinker! I had walking penumonia a year before my diagnosis. The year or two before the diagnosis came I was sick with everything all the time. After starting medication and giving it a good chance to work, I hardly ever get sick now. last week with that gastroenteritis was the first time I have had something like that in about 8 years!
Remember that our immune systems are over active which can also make us sick and suseptable to a lot of things. Of course we have to be careful about being too suppressed (which I know you're concerned about). What's important is seeing the big picture with you. Full CBC blood work, have your compliment levels checked (C3, C4. These are dynamite indicators of active disease). Don't bother getting your ANA checked. That test is such a shot in the dark. And also go on how you feel. YOu have a lot of pain right now which means your Lupus is active. Active Lupus = infections, pain, etc. Definitely let your concerns be known to your rheumy.
I often have problems with feeling like crap and dizziness after hot baths or showers. Our temperature control mechanism doesn't work properly. I tend to stick with luke warm instead. If you're having a lot of pain and can't tolerate a bath, try just using a hot water bottle or something like that where you can stick it on certain areas, not immerse yourself in it.
Oh the poops... That is one thing I have had issues with for probably over a decade. It's all chalked up to inflammation in the bowels and intestines. For me anyway. and the stool samples always come back negative for me too. Do you notice if yours get worse with certain foods? Or stress?
Amy I'm so sorry you're having a terrible time. It sounds to me like your Lupus is not in good control. Maybe talk to your rheumy about trying another med other than Cellcept? Maybe it's not the right med for you? Were you better before the Cellcept was started?
Keep us posted okay,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
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