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@jillgirl

Good idea. I have Sjogren's and those with this autoimmune condition - about 14-18% - also develop lupus. I have been tested for lupus my entire adult life as I have had the 'butterfly' type rash/redness. All tests were negative. Later was told it was rosacea. Then I was told I have fibromyalgia, then a type of connective tissue disease (no name) and now told it is Sjogrens. It was my dentist who first suggested Sjogren' s and my optometrist who tested for Sjogrens and made the rheumatologist suggestion who did more the blood tests. My symptoms have been all over the map since my early 30s. Skin redness/itching, inflammation of the iris, inflammation of the carotid artery - anything weird.
Now they expect me to have 'normal' reactions to Evenity??

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Replies to "Good idea. I have Sjogren's and those with this autoimmune condition - about 14-18% - also..."

Wow, I relate 100%. It feels like whatever can go wrong does go wrong. I’ve had repeat spontaneous pneumothorax in one lung. It was collapsing twice a month and 90% of the time required a chest tube. I’m pretty tolerant to pain and different procedures, because I’ve been sick my whole life. Chest tubes however, so painful. So I had surgery to prevent it from happening, which help up until my first son died. The first surgery had me out of the hospital in 3 days, but the very same surgery the second time had me in the hospital for 3 weeks.
I don’t have a stomach so I never really know if I’m absorbing meds as I should, and my weight has dropped as low as 85 pounds.
I was FaceTiming my daughter and she saw my face and said “aw, not again mom” and I was so surprised, I have no memory of having this rash(I say rash, but really it’s just red, hot, inflamed skin, no dots or open wounds, not itchy) before. But my daughter remembers taking me to the doctor about it a couple yrs ago. My memory is terrible. I’m not sure if it’s because I’ve had so many surgeries, traumas, PTSD…many a combination.
I’m going to make sure I show the picture to my regular doctor, she can do blood work if needed.
I wish you and your health all the best. ❤️