Sticky Blood-Hughes Syndrome Support
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APS and Lupus

Hi everyone it's been a long time since I have been on here. I was told I had APS about 30 years ago. And finally after seeing Dr. after Dr. no one would confirm that I had Lupus. I went to the Lupus Center at West Penn hospital in Pittsburgh, PA and found a Hematologist that did blood work 12 weeks apart so he could see and compare them, and then a Rheumatoligst did the same blood work about 6 weeks later and it showed that I DO have Lupus along with APS BUT IT TOOK ABOUT 30 YEARS!!!! I am still on Warfrain and now on predisone and I'm still getting ''nogules" or bumps on my skin they are itchy, then they turn black and blue with a nut size bump that is really painful, but the predisone has helped very much.

It;s been a long journey but finally got some answers and found Drs. that I like and are very helpful.

3 Replies

Hi, glad to hear that the dots are finally joined! I suggest that if the Rheumatologist can't identify the skin problem part of things, that they give you access to a Dermatologist. Glad to hear about your progress. MaryF


Sorry you have lupus, glad you finally have a diagnosis! My father was a doctor. He went into medicine partly to understand what was going on with him. Turns out, he had lupus. But in the 1940s when his symptoms were at their worst he was routinely told that his symptoms were psychosomatic. Lupus was not recognized as a real for sure disease in United States until the 1950s. Sadly, the perception that autoimmune diseases are all the result of psychosomatic depressions and trauma are still prevalent in the medical community today, 2015.


At least you are going in a positive direction . Best of luck to you my friend


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