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Giant Cell Arteritis
I was diagnosed with Systemic Lupus about 30 years ago at 37. It’s been pretty mild but for the last 6 weeks I’ve been really sick. My current Rheumatologist thinks it’s one of the PMR autoimmune diseases called Giant Cell Arteritis. My inflammatory markers are through the roof; CRP 266 & ESR 78. Still waiting for all the test results to come in but in the meantime steroid injection has not helped much. I’m really worried about my eyes; have had problems losing vision especially in the last 6 months. Anyone can share more about GCA? I’ve been reading up on it but would appreciate hearing experiences from other patients. Thank you.
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@pah17 Or it was always out there but mis-diagnosed or never diagnosed. Perhaps it never has been a rare disease?
@astarte888 and all... Well, when I had Mono in my teens as well it was similar to a light flu, surely nothing compared to my experiences with Covid. The 2 Covid attacks I had in 2023 made me quite ill. I was older, but it had no similarity to Mono in my case. Covid was a tough illness for several days the first time in July. I was quite ill. The second infection in October sent me to the ER, with Covid pneumonia and O2 levels in the mid-80s, a sick puppy. Even getting Remvesidere, I got worse and had a couple of weeks of bad illness. It took a week in bed using my Bipap with O2 24/7 to stay out of the hospital and begin to see improvement.
I haven't been the same since. Fighting infections, sepsis, Diabetes now on insulin shot daily, my entire system very much more vulnerable.
It triggered something in my autoimmune system. I developed PMR, GCA and Vasculitis that have each caused me many days of pain and illness.
So, no. I do not believe it has the same features as any virus ever experienced. It is man-made. It is continuing to create problems for us years after we are 'over' the Covid infection. I don't think we are ever over the Covid infection. I think it is continuing to cause damage to our bodies in ways we will discover as time evolves. It is extremely dangerous and unknown... making it even more dangerous as the years pass.
I was extremely ill and have been since having this horrid virus.
Elizabeth
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1 ReactionMy initial inflammation event was similar to yours with very high markers (CRP 346 and ESR 99). I had mainly PMR symptoms - extreme 24/7 pain in my shoulders and hips. The initial dose of prednisone of 20 mg/day worked well at first, but after several weeks as my natural production of cortisol went to zero, and 20 mg of prednisone was no longer enough. I developed double vision and there was a nonstop ache around my eyes. I went to the ER, and the doctors increased the prednisone dosage to 60 mg/mg day, which was very effective. This need for higher prednisone is apparently more consistent with a GCA diagnosis.
After about 5 weeks, I began to taper off prednisone, and started on weekly Actemra injections. I tapered off prednisone over 6 months. High dose prednisone is not pleasant and severely limited my sleep, so it was good to get off it. The Actemra was very effective with minimal side effects. I stayed on it for another year, and then tapered off Actemra.
Unfortunately, I then had a minor relapse about 6 months after getting off Actemra, and had to go back on Actemra. I also briefly used prednisone for a few days before going back on Actemra. Amazingly, the pain from the inflammation from my relapse went away within HOURS of my first injection of Actemra.
I am currently continuing with Actemra (now actually Tyenne, which is biologically similar) weekly injections, and experiencing virtually no side effects, other than a slight increase in my liver scores ALT & AST, which are still relatively low, around 20.
GCA PLUS SECOND TYPE OF VASCULITIS
Ten months with GCA; currently taking 40mg Prednisone; when to start Tyenne is still up for debate. About 10 days ago I woke up with angry red “bands” at both my ankles. Since then and with some symptoms, rather intermittently, there’s been significant itching, swelling, aching and radiating heat from the area. Angry red areas are growing larger!
To keep this post short, I’m scheduled for a punch biopsy @ dermatologist next week. My Rheumatologist wants to rule out it being just a skin issue although she suspects it’s vasculitis…so does dermatologist. Actually, I think there’s vasculitis in my forearms too but dermatologist says no. So, it’s just a coincidence that my arms have been itching like crazy for about a week?
My #1 question for Rheumatologist is, now what?! I don’t see her until late next week. If it is vasculitis and treatment is most often steroids, will she bump up Prednisone to address my legs? What about the Tyenne?
Bottom line: has anyone else developed a similar 2nd type of vasculitis and what treatment plan got rid of it?