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ITP, Sjogrens Syndrome and a mystery thing with my sinuses that makes me "interesting" to my docs

Posted by aerokoala 1 year ago

I have ITP which was a sudden onset back in August, 2007. Platelets went down to 3. ICU for fear of a brain bleed, transfusion, additional units of blood, 6 units of platelets and 23 of IVIG. No problems or treatment needed until I noticed
those little red dots on my ankle October 31, 2013. Went to Urgent Care to get a CBC. Platelet count was again 3. They told me to go to the ER where my platelet count was 1. In the hospital for a few days, IVIG treatment and platelets have been fine since then.
The initial ITP hospitalization in 2007 is also when they discovered I have Sjogren's Syndrome. A lot of things made sense as far as dryness, etc. but no major symptoms or debilitation at that time. At this point I have unreal fatigue at times, peripheral neuropathy in both feet, some lung involveent. K
Within the past year I have developed a lesion in my sinuses that no doctors seem to know what it is. On my third level up with referrals to see docs that may be able to figure it out. Will have my second surgery at the latest teaching hospital to look at it Friday to clear things out, get more tissue for pathology and be sure no tiny tumors are hiding in there. We all suspect it may either be a new autoimmune disease or a wonky side effect of the Sjogren's dryness.
The first line of defense and treatment for all of these is prednisone. I get such severe steroid psychosis on even small amounts of oral prednisone my hematologist has said not to try it again. Latest doc with the sinus mystery tried a different type of steroid. Methylprednisolone I believe. It exacerbated my depression to an extreme level but I realized what was going on. I got through it but it was horrible to feel it.
Other things going on - hypothyroid, osteoarthritis, depression/anxiety, allergies, back issues, some knee surgeries.
Allergy Hypothyroidism Osteoarthritis Ankle Sprain Anxiety Depression Knee Pain Medrol Methylprednisolone PredniSONE Fatigue Sjogren's Syndrome Psychosis Neuropathy Immunoglobulin Skin Lesion Sinus Infection Depression
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