Giant Cell Arteritis

@tsc thanks for all the information. My bloodwork results are still coming in so haven’t had the biopsy yet. Unfortunately, I don’t do well with prednisone so Rheumatologist gave me a shot of Kenalog which seems to finally be helping a bit. But I was warned about the white light or any drastic change in eyesight or severe headache; that I need to get to ER. I live in Mesa, AZ & am SO relieved that Mayo has changed their mind & are squeezing me into their Rheumatologists after I gave them more information about my condition. I just have to wait a month. Hopefully there they will do the biopsy to confirm & come up with a treatment plan that avoids steroids??

Thanks everyone for your very helpful information. This had been such a scary experience, feeling so alone & overwhelmed. Your taking the time to share has made me feel a little more hopeful and definitely not alone. Thank you!

@momac59 and all... I suddenly developed both PMR and GCA following a 2nd bout with Covid in 2023. PMR hit first and was extremely traumatic. Severe pain in both shoulders and hips, unable to move, change positions in bed, unable to turn over, really fun getting out of bed to to to potty!!!

My doc put me on 15-20 mg Prednisone that helped a bunch.Then the GCA hit me with pain in both temples and sight changes, thankfully not white light or that drastic. This was a double shot of autoimmune diesases I'd never heard of brought on by Covid. My rheumatologist started me on Methotrexate for the GCA. It worked. I was on both Methotrexate and Presnisone for several month when my liver functions began to go wonky. So, as Methotrexate can play with the liver, my doc reduced and took me off Methotrexate and liver functions were/are no normal.

Suggest you ask to be put on the wait list for a sooner appointment if you are concerned about the month wait. I do that when I feel an urgency to get some testing and answers and almost always get a better time to see the doc. Or, at least for the testing...

Wishing you well and blessings... Elizabeth

@ess77 I was also diagnosed with GCA about 100 days after I had Covid (1st time). I was wondering whether Covid was the trigger. There is a scientific article written about an increase in GCA diagnoses during the pandemic in Bath, England, but the sample size was too small to establish a statistical relationship. Did anyone else get GCA after having Covid?

@purplebike Interesting, I did get GCA after Covid. I always thought Covid, or the Covid vaccination, had something to do with it.

@dbyrne and all... I'm interested to get your information. I put the timing and multiple new illnesses together as a logical consequence. I had a lighter Covid infection in July 2023, using the new Prescription drug from my PCP with D3, Zinc, Magnesium, and a couple of other supplements most I was already taking. I had the 1st and only vaccination at Mayo the 1st day it was available... I was called to set an appointment. I was honored to be considered in such bad shape I should be one of the first to get it... What a dubious honor! Anyway, that was in 2020??? and as I live an isolated life anyway due to helping my disabled son and my worsening health issues, I thought I'd avoided Covid. Nope. The new strain evolved and I got it in July 2023. Took the meds and was ok. Not great, but did fairly well.

Then, in October 2023, I got very ill and tested positive. I got the 3 Remvesidere infusions at Mayo... after the 2nd, I began to get worse with pulmonary issues. Mayo infusion staff sent me to the ER and I had Covid pneumonia, heading for hospital admission. I negotiated my way home since I use a Bipap with O2 at night, religiously, and as long as I could keep my O2 up to 90 at home using the Bipap/O2 system, the ER doc allowed me to treat at home. I did and after 4 solid days and nights on the Bipap with O2, I began to improve. Shear determination! I willed myself better!

I survived that illness, but I was extremely ill and it was tough. Alone. Within a couple of days I had enormous pain in both my shoulders, both hips, to the point I couldn't turn over or move in bed... with other symptoms. The doctor ordered Prednisone immediately for PMR.

Within another few days, as that began to subside, my head/scull pain was severe and both sides of my head, temples were in sharp pain, my eyesight became blurred and changed. GCA hit. The doctor increased the Prednisone, then Mayo rheumatologist put me on Methotrexate as well to attack the GCA. It worked well and those symptoms reduced. It took longer for the PMR to back off, and I'm not sure it truly has.

After all that happened in 2025, with paralysis and sepsis, etc, I think my entire autoimmune system was compromised, my nervous system as well. So, now I'm steady-ish on 14 mg Prednisone.

So, yes! Covid is the underlying culprit. Perhaps including the vaccine, don't know. I do know I now only take the flu shot annually as I had the long-term pneumonia shot and RSV previously. Never will a Covid vaccine come near me. Nor any other vaccine... annual flu is important and helpful.

I now have varying degrees of activity from Vasculitis, Sarcoid, PMR, GCA. I think that's all the autoimmune diseases I have. Have multiple other, some related some not, illnesses. Vaculitis came after Covid as well, which makes sense as it causes blood clots and attacks the vascular system. I had a pulmonary aneurysm last year...

I'd wager there are many stories you will hear from especially older folks who experienced many of the same issues following that pandemic. It is and has been constant infections, blood issues, autoimmune, lungs, heart, brain...

Blessings... Elizaeth

@ess77 So sorry for what you’ve been through. I also only got the annual flu, RSV & pneumonia, no Covid vaccine.

Not to undermine your experience/decisions but at the height of the pandemic, people really were dying because of comorbidities. I don't regret taking the injections as a Senior, along with my husband.
We avoided the virus until December 2024. Pretty good record.
Do I wonder if my current PMR/GCA diagnosis is related? Why sure. I just think that autoimmune issues are on the rise and probably for a multitude of reasons. Or maybe they were always out there but there was no name.

I agree, auto immune diseases seem to be a big unknown, who knows what triggers them. I know that the Covid vaccine saved many lives. If we have another pandemic (I pray that never happens again), at my age I would get another one. Right now it’s a personal decision for me, and my PCP totally agreed. Here’s to hoping we all stay healthy.