Autoimmune

@momac59
Just got a call from my daughter in Chicago (I’m in AZ). She is 36 & has had some weird health issues that , of course, are a mystery to many doctors. We are all medical mysteries in my autoimmune family!!
She got some blood work back & a positive ANA. We are waiting for other results & she is trying to find a good Rheumatologist to see what’s up. She lives on the far north side of Chicago & University of Chicago where they are doing these promising clinical trials is on the south side. I used to be a patient there. I hope she can eventually get in but it’s out of network for her.
Sorry for the long story but I’m processing this information; I feel like it’s bad enough to live with Lupus, diabetes for 30 years & now this more serious intense GCA/PMR is bad enough. But my kid having to face all this is even worse for me. Both my sisters have Lupus, one has Sjogrens too. My niece & nephew both have Crohns. It feels so unfair at times that my lovely family has been through so much. Thanksgiving is always interesting; it’s like a medical convention!
But I do realize it always could be worse. There are folks out there so much sicker & don’t have the good medical care I’m getting at Mayo. My daughter hopefully will find that on Chicago and she has lots of guides & support for her autoimmune journey.
She also has the advantage of time; a lot more is known now & through these clinical trials & research better treatment. 30 years ago it took an average of 8-10 years to get a Lupus diagnosis. Biologics weren’t available, support was minimal except for Lupus Foundation & it was a lot scarier.
Once again, thanks for allowing me to process this in words to folks who understand. I feel less dread & more hopeful for my daughter. Hang in there , especially all the younger ones suffering, werzie1946.

Does anyone have burning sensation on earlobes?

I’m so sorry you’re suffering so terribly. I am wondering if any of your doctors suggested eliminating certain foods to rid your body of inflammation? I have an auto immune disease as well, Hashimoto’s. It causes bloating in the body and it was recommended to me after reading a book written by Isabella Wentz, Pharamacist on the Root Cause of Hashimoto’s. I eliminated eating gluten, dairy, soy and seed oils. Doing this has made a huge improvement in my body inflammation. It’s an easy thing to try and it costs nothing to do. Try it for 2 or 3 months and see if it doesn’t make you feel better and look better. Wishing you all the best!

have you tried any of the biologics? i take rinvoq currently and dupixent for my sinus inflammation. i’ve also in the past taken xeljanz, humira &
enbril. i prefer the rinvoq or xeljanz because they are a once daily pill as opposed to injections but i have had good luck with all of them. talk to your ruematologist about this class of drugs, they truly do help. Take it from someone who has had lupus & RA for 30 yrs. and tried every drug in existence.

@lkirnbauer
Thank you, I will try that.

@voodoo57 - Yes, I totally have facial redness and burning under the skin. I also deal with Psoriasis and Rosacea. Unfortunately I also have Psoriatic Spondylosis Arthritis and five more chronic conditions. When I began Tremfya shots they helped a little with the redness at first but now, it's back to what it was before the shots. Is there any true remedy for it or is it always the creams that are given from the Dermatologists? I've tried nearly everything. Keep me updated on how you are doing. Have a great day.