How to react to possible GCA flare after Moderna ... - PMRGCAuk

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How to react to possible GCA flare after Moderna flare

weatherman69 profile image
10 Replies

Day 3 after Moderna booster, and having S/S of GCA flare. What are you all doing to compensate. I am currently on 20mg a day, took a extra 10 the day of, and took Tylenol prophlactically. Anything else? did anyone keep more predisone on board for a couple of days? I had to take more today, because of bad headache, vision, and others....

Thanks

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weatherman69 profile image
weatherman69
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10 Replies
jinasc profile image
jinasc

All I can tell you is my experience with GCA and Flares.

I was down to 20 mg after 6 months, flare and back up to 40mg, then a 10% reduction every month till back to 20mg.

Unfortunately I was one of those who had a second flare at 20 mg - this time same.

Then when controlled once again with a high dose, and back to 20mg, by that time two plans had came along 'Dead Slow and Nearly Stop' and ' Tortoise and Hare' I followed the plan although it said not till reaching 10mg, but I just ignored that bit and 5 years from being diagnosed with GCA remission, on 1 Jan 2022 I am started into my 15th year of remission.

Over those years, I have learned from others, hit a flare hard and fast - and don't be in a hurry. Yo-yoing means, to me, that you end up in the long term taking more pred than you would have done going slow and steady.

Remember that is only my experience and times have moved on.

PS: I ask why you have added "Tylenol"?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tojinasc

Times might have moved on, but treating a flare hasn’t much…..tried and tested way is usually the best.

Guess Tylenol added in for side effects of vaccine - I also take paracetamol for about 48hour period around any vaccine. Does help with headache/sore arm and is advised in notes you usually get - certainly with flu vaccine.

jinasc profile image
jinasc in reply toDorsetLady

Thanks DL another live and learn to add to my 🧠 which is fairly old.

That is enlightening to me, as I never had any adverse re-action to three 3 Vac but come to think of it, my neighbour who is years younger than me was felled for around 3 days..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tojinasc

So was my son with his first one and he was only 49 then, but he did have Covid very early days, so we put it down to that. He was absolutely fine with 2nd and booster.

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

I have to say - I have never taken anything after any jab and have yet to have a headache that needed even a paracetamol ... The second Moderna jab caused a flare - but it was definitely PMR-type symptoms. Paracetamol doesn't work for that.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

No it doesn’t, but if the issues aren’t PMR or GCA it might.

As we know from here, once people have PMR or GCA it’s blamed for everything, just saying t’aint necessarily so…

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

So how much have you taken today….30mg again?

Do you think all symptoms are GCA related, or a mixture of that and reaction to vaccines - headaches can be side effect of any vaccine as can muscular aches and pains . Usual recommendation for flare is explained in this post - just adjust doses to reflect your situation.

healthunlocked.com/pmrgcauk...

weatherman69 profile image
weatherman69 in reply toDorsetLady

So yesterday was a mess, with heartrate elevated, andI always have bad temporal headaches come on strong, lots of my symptoms were coming on. So we did do the 30mg over the whole day. I got plenty of sleep last night, so when I woke, I had a headache, but it was due to needing to drink. The tylenol was for muscles aches and pain in injection site, alot of our friends over here, get slight fever with the jab. I am extremely sensitive to any pain, and will start a flare, so I do what I can to avoid. Today, I feel pretty normal, and able to some bed exercises before getting out of the bed. My legs are not tender to touch at all, which is a good sign. So I took my normal am dose of 13mg, and with dinner time I will take 7mg. I plan to report to my wife, if I start feeling anything. My heartrate is still elevated in 90s, my baseline is 70s, but my O2 sats are back to normal at 96-98. I feel much better today. So this is day 4 after booster. I have labs on tuesday, and will know more then.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toweatherman69

Ok thanks for update …glad you feel a little better today, fingers crossed it continues and was just a blip following vaccine.

Sharitone profile image
Sharitone

I did not increase pred or take anything else prophylactically, though at the time of the 2nd dose (Pfizer) I was on 50mg, so it would have been an odd thing to do anyway. I did get an extra dose of the deathly fatigue after the 3rd dose, but it subsided on its own after a couple of days. I hope your reaction has also subsided by now. If not, I really think I would be contacting a medic!

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