I have GCA (3 and a half years in, 7 mg prednisone)and got my first Pfizer a week ago-exactly. Felt good until Thursday morning when weakness and chills started in. I had a headache last night, today aches at joints and generally feel unwell.
My specialist just called and said I need to repeat bliidnwork in a week and watch for headaches or vision changes, but otherwise stay put at 7mg.
He also reported that patients were experiencing vaccine side effects mire dramatically and for much longer than that of other folks receiving the covid 19 vaccination.
Thoughts?
Blurry 62
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Blurry62
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Hi Blurry, I am sorry you’re not doing well. I have GCA so I am interested in your story. In your last paragraph did you mean to say GCA patients were experiencing more side effects? Take care of yourself, fm
My doctor told me his "autoimmune disease patients were experiencing vaccine side effects that were more pronounced, often delayed, and of longer duration."
Sorry you are not feeling so well, hopefully short lived and may be a sign vaccine working well on you.
I have GCA, second phizer 10 days ago, normal monthly blood test for CRP on Tuesday, no change in CRP still less than 4, which is normal. I have had no side effects from either dose, fingers crossed I may have some protection but not counting on it.
I guess we really can't count on the vaccine as a "get out of jail free" card in any case. We'll be wearing masks and keeping our distance for some time to come I fear. I just want it to be safe enough to travel to see family, or for them to come to us.
Agreed, but also starting to get itchy feet for travelling again. I was diagnosed with GCA last august, so went from age related risk (55) which was relatively low to CEV and shielding. As things open up in UK I am feeling that difference most acutely.
I have looked into Roche antibody test to establish wether I have gained any immunity from the vaccine, although a very low value from that does not say anything about T cells, but may give it a try and hope shows some immunity albeit very low.
It's the little girl, my first grandchild, I'm old enough to be a great grandmother so a long time coming, who I've not seen since December 3019 when she was four months old. This reply was interrupted by a Skype 😍 , and she was very chatty, although I don't really understand what she says. It's my daughter's birthday. We'd planned to visit for her birthday last year.
Interesting. I have just recovered from my second astra-Zeneca jab having felt very unwell, bad headaches, fluey & achy for 4 days. 5 years into GCA & on 6mg of pred.
We are traveling through this close together. How are you today? I'm waking with medium temporal headache and joint pain. Staying under warm blankets awhile. I hope this goes away in a few days.im supposed to get a Reclast infusion on monday.
We are indeed! I had the jab on a Wednesday & I began to feel better by Monday evening - the headache was really bad on the Friday & Saturday, paracetamol didn’t touch it - felt just like GCA before I was diagnosed. However feel much better now - hope you recover soon.
Hope you feel better soon. I'm 6 years into GCA/PMR, on 5 mg, and had both Pfizer jabs, the last 1 week ago. Apart from a sore arm around the injection site, I've had no obvious side effects.
"Upon vaccination, an acute-phase protein reaction may develop which is a part of the innate immune system. Vaccination has also been demonstrated to cause an inflammatory response, which results in homeostatic changes including changes in renal and liver functions."
CRP will rise as explained in the article - and an increased CRP contributes to the clumping of red blood cells that is what causes the rise in the ESR/sed rate. Both CRP and ESR are very general indicators of an inflammatory response so can be due to a wide range of causes - including GCA/PMR and a vaccine. They are both included in the group of responses termed "acute phase responses".
However - as so well identified by your doctor, you can't tell superficially whether it is the GCA/PMR causing the increase or the vaccine - so you don't increase the dose of pred but check the levels a week later to see of there is a rising trend. But that should be the case any time a blood test shows raised ESR/CRP without distinct symptoms - no knee jerk reaction but watchful waiting.
The development of inflammation is a normal and desired response. You were also starting from a raised baseline - it would have given me an ESR of under 30 and no-one would have turned a hair.
Everyone reacts diffferently, can't even say that PMR or GCA would be different. Even GCA itself has 3 different mechanisms to create the inflammation - which is why tocilizumab only works 100% for half of patients.
Basically seems to say more worked needed when looking at CRP results, although may possibly expect a spike a few days after vaccine if working well.
Not personally very reassured that vaccine has worked for me as I had a routine CRP test for GCA 6 days after my second dose of Pfizer and result stubbornly normal, <4, as rheumatologist would say.
Only stubbornly normal now, initially had very high markers before diagnosis and pred, which made diagnosis swift for me. I can’t imagine how difficult it is for the always ‘stubbornly normal’ to get a diagnosis.
So relieved mine were very raised as Dr thought 12/10 headaches were just one of those things and would probably go away on its own in a few days, despite full daily doses of paracetamol, ibuprofen and cocodemol making no difference. Next day straight on 70mg following blood test results.
I, too, had a reaction to my first Pfizer shot. Sore arm that went up to my shoulder after four days and then I realized I was having a PMR flare. I had been on 4 mg pred, so I increased to 5 mg and asked my gp for a new script so I didn't run out. She agreed with me to stay on the 5mg until after my second dose. No ill effects with the 2nd dose except a bit tired for a day. No bloodwork taken, as I could tell it was a flare. Good luck.
I had a reaction to the shot... about 3 or 4 days after. Full Flare of PMR feeling so I upped my prednisone from 5 to 10 and felt better fast! for 5 days then 7 then 6 then back to 5mg now DSNS back down... BUT I have PMR and not GCA. good luck. so sorry you feeling poorly!!!!
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