Giant Cell Arteritis

@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

My 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?

I have been managing (struggling 🙂 ) with PMR for a couple of years now. I was unable to get below 15 mg prednisone so my rheum started me on Tyenne (biosimilar to Actemra). I developed a bad reaction so she took me off and started me on Rinvoq 3 months ago. I was able to get down to 7 mg prednisone . After 2 months I started having terrible right sided jaw, TMJ and temporal pain. I thought I had a TMJ flare, but it turned out to be GCA, verified on ultrasound. I've been on 60 mg prednisone daily for a couple of weeks now, and my doctor is trying to get me on a different Actemra biosimilar (Avtozma) at which time I"ll stop the Rinvoq. So frustrating.

@dianedenise
In 1990, my 74 year old father woke up one morning and could not see. He was taken to the hospital where they suspected Temporal Arteritis and put him on high dose steroids. His vision returned. A biopsy was negative for TA. For five years we visited doctors from Boston to New York looking for answers to flare ups. I told doctors he had VIM; Vascular Inflammation, Migratory. I also called it Whack-a-Mole inflammation but that didn't sound as professional. One night while I sat with him in the hospital a doctor came in and sat with me. He said, You know, we may never know what's wrong with your dad, but we know what's killing him." I said, "Steroids?" He said yes and suggested we stop searching and focus on keeping him comfortable. He lived, comfortably, another five years without a diagnosis.
In November, 2020, I went to the hospital (my PCP wasn't seeing patients) with a 2 week headache. The doctor said my sed rate was very high and she suspected Giant Cell Arteritis. I told her I'd never heard of it and she said they used to call it Temporal Arteritis. My biopsy was positive.
I never had covid or mono. I get monthly tocilizumab infusions and try to keep prednisone use to a minimum as I suspect they left me vulnerable to melanoma and cataracts.
I give thanks for my blessings. It could be worse.

@maebea I have totally asymptomatic GCA. Meaning I was only Dx with a PET scan. It has already done aortic damage which the aorta specialist will now be following in an effort to avoid an aneurism. GCA when caught early can be managed with a biologic and reduce the damage risk significantly. Your story is a cautionary tale and I wish you success with your treatment and with your future.
Thank you for sharing your father's story.

@jabrown0407 Thank you for the contact. I've been getting a tocilizumab infusion for almost six years now. I still get flare-ups, on the other hand, I'm still alive to get them. I have good days and bad days, more doctors than I can keep track of, but overall I feel very fortunate. I'm 75. I've helped care for and bury a few friends and relatives who were healthy and worried about me when I was diagnosed.
I don't know how early they caught it. I was pretty sure I had Whack a Mole inflammation when my father got sick and I wondered if doctors would figure it out by the time I was sick enough to need help. Early scans showed a slight aorta enlargement but there has been no change since then. No one seems worried about it.
Good luck to you on your journey, you've got a good heart. Blessings on the doctors and scientists and all who work to find solutions. It's a fascinating mystery.