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Lupus flare triggers
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moniquecraig1 posted:
I was diagnosed with SLE Lupus about 10 yrs.ago ( along with endometriosis & bipolar disorder). My symptoms of this illness seemed to mimic those of multiple sclerosis, rather than the classic symptoms often described. I had SEVERE peripheral neuropathy pain (nerve damage), in my arms, hands, legs, feet, and even one side of my face. I lost total vision in my right eye for about 20 minutes; then, I developed severe pain in my chest when breathing, uneven heart rhythm, pain in my left side , a pulmonary embolism, vasculitis on my fingertips, and finally, thrombocytopenia, leukopenia, & anemia ( of which I am still being treated for with azothiaprine, an immunosuppressant drug (I had MAJOR problems with prednisone, as it made my bipolar depression worse, and I ended up in the psych ward). I have been in the hospital numerous times in the course of about 2 years for blood transfusions, and for when my white blood cell count & platelet counts were dangerously low. Curiously, I have never really experienced many skin rashes, and no hair loss (I have waist-length hair).

I have been on S.S. Disability since about 2003. I used to be a bodybuilder & martial artist before this disease robbed me of most of my strength to even do mild cardio workouts . This year has been an EXTREMELY stressful year for me (without going into too many details: my former psychiatrist lost his license; my pharmacy kept messing up all my medications, with both my new psychiatrist & my hematologist, and my apartment building caught on fire last week).

I have had the first lupus flare that I have had in about five years: the same peripheral neuropathy symptoms came back in my feet, and I have had MAJOR fatigue & gastrointestinal difficulties, including nausea, diarrhea, & even high blood pressure (which I have never had before). I have been sleeping for almost 12 hours during the day, and a few more hours at night, every day, for about 2 months. I am feeling a little better now, but it has taken me at least two months or more to recover. I know now that stress is the big trigger for me to get a lupus flare. I don't usually go out in the sun anyway, and the weather doesn't seem to be a factor for me.

I would like to know if there are other people with SLE Lupus who have experienced the same symptoms that I have described in this post, besides the joint pain and lupus rash that is so often described. As a side note, I had an aunt who had multiple sclerosis when I was a child. She died around age 45 ( I am 48 yrs. old). There is no one else in my family with an autoimmune disease.

Would love to here from you!

Monique
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pennbird responded:
First of all I want to say I am very sorry for all your troubles and the passing of your aunt. I have been on antiobiotic therapy for the last 15 years after being on prednison and imuran. I find this much easier to take and it is an approved thereapy for autoimmune disease according to American College of Rheumatologists. You can get more info from rheumatic dot org.
Maybe someone else can give you input on your symptoms and current meds.
 
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moniquecraig1 replied to pennbird's response:
Thank you so much, Pennbird!

Actually, I did experience joint pain in my fingers and toes after the periphery neuropathy subsided (a little). I had actually forgotten that I had joint pain in my fingers and toes because the peripheral neuropathy was so bad ( it actually is more painful than the joint pain), if you can believe that!

Thankfully, I go to my hemotologist next week, and I go to my reumatologist in February. I had actually been tested for M.S. before, years ago, before I was finally diagnosed with SLE lupus. The CT scan on my brain showed no white spots (a telltale sign of M.S.).
I will tell my hemotologist about everything then.

Thanks, again!

Monique


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