@pkh3381, @beaver, @astaingegerdm, @pb50, @johnbishop, and all...I developed GCA and PMR following a Covid infection in July 2023. Before that, at 40 I developed Sarcoid and other autoimmune issues through the following decades. I'm 77 now, dealing with new PMR, GCA, and microscopic poly????? that's just being diagnosed and I hope to begin treatment next week.

I'm currently taking 10mg of Prednisone since last July for the PMR and GCA. I also took Methotrexate and a penicillin derivative when I had bronchitis after the July Covid. I had many wakeful nights on the steroid, but it did a great job of getting me cleared of issues. I think I can deal with whatever as long as I know the medication is indeed doing what we want it to accomplish, helping my body fight for better health. I frequently have intestinal reactions, nausea, increased pain for 7 days with Recalst infusion, 3 days of reaction to the 2nd Covid vaccine in 2021?, and on and on. But, my brain turns to the positive results of the medication, is it doing what we want it to do and my body is fighting it in a normal way it would fight an intruder? If so, I'll deal with the side effects...up to a point.

During the last year, I had 2 extremely difficult and non-productive colonoscopies, that left my body in poor condition, and fragile and I have yet to truly recover; had Covid in July 2023 for the 1st time, in January 2024 the 2nd time; had bronchitis following July Covid; developed PMR, GCA after July Covid; never recovered from those illnesses and still taking 10mg daily Prednisone; developed Covid pneumonia while having 3 days of IV infusions of Remdesivir; developed microscopic poly???? in late Jan following the 2nd Covid; and had flares of Sarcoid after both Covid infections.

The GCA symptoms I experienced and still am having to a lesser degree, include severe headaches, mostly on the right side of my head, sharp pains in my temporal areas leading me to consider stroke possibility, eyesight changes that were very worrisome-blurred vision, inability to clear my vision at times, increased double vision at times not able to restore it to single, tender head/skull, feelings of sinus issues in the frontal areas, extreme fatigue. PMR symptoms were headaches and neck pain, both shoulders had severe pain and I wasn't able to turn over or use my arms/shoulders well, both hips hurt badly...not the lower back that always is an issue, but the hips and both sides. Prednisone helped relieve pain dramatically but I can't taper off it at this time. I also used a Kenalog cream on my hands and feet. legs, hips, neck, shoulders - I keep it for Sarcoid skin issues and pain. It worked wonders. I use a Combivent inhaler that helps my lungs. I also have a bi-pap with added O2 I use nightly for severe obstructive sleep apnea and low O2 absorption. It probably truly saved my life during both Covid episodes, as well as the bronchitis. I hope this information helps answer some of your questions.

I have decided now, I will not have another colonoscopy before my death. The prep is too difficult for my body to handle with my issues. I will not have the 2nd Reclast infusion due this year. My body can not take the depth of the pain and 7 days of difficult reaction to the medication. I won't put my body through that again now.

I am making clear, educated, informed decisions about my body, and the treatment options for whatever is attacking me at the time. I will do whatever I can to improve my life in the time I have left. I will not add to the fragility of my life, add to the discomfort and poor quality of my life at this time, for any reason. I make my own decisions. I'm very proactive and do my research, I ask questions, wait for answers and if I don't get them, move to some way to get answers.

Yes, if it's prescribed by my excellent Mayo rheumatologist whom I respect, I will take Methotrexate, Prednisone, other steroids, and whatever is suggested IF I am convinced it will lead me to a better time on this earth. If the side effects are too severe, NO I will not put myself through that horror.

That's my decision. I share with you how and why I arrived at these thoughts only in the last months, after experiencing very difficult reactions and accumulating negative results leading to a much more fragile body than previously. No more harm. The only possible result now is improvement. Positive. Improved health. Improved life.

I hope this long story helped you a bit. It is

Hi P,
I’m not a doctor, but I hope you have a rheumatologist who is monitoring your blood work so you don’t lose any vision. Yes, I’ve had, and occasionally still have, very tender spots in my head, sometimes very sore to the touch. I just recently went through a spell of that, now it’s much better. I have never noticed any swelling. I urge you to apprise your rheumatologist of all your symptoms to prevent losing any vision.
Beaver