GCA Flair after Shingrix Vaccine: Yesterday I had... - PMRGCAuk

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GCA Flair after Shingrix Vaccine

cmgarner profile image
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Yesterday I had my second Shingrix vaccine, and sadly, I’m having my first GCA flair. Has anyone else experienced a flair after a vaccine?

After listening to Dr. Dasgupta’s wonderful presentation this morning (8am here in Austin, TX), I felt a slight headache (normal side effect of the vaccine),and monitored closely. Tylenol didn’t help.

By 2pm it was apparent that it was the same as my initial GCA headache last year. Took 15 mg prednisone, on top of the 15 I had taken this morning. Better, but still symptomatic, and increasing fatigue; no vision impairment. I took an additional 20mg about an hour ago ( 50mg total today) and I’m feeling better. Tomorrow I’ll call the rheumatologist to get guidance on next steps.

I was diagnosed with PMR in November 2019 after 10 months of symptoms, and started 10mg prednisone. Five weeks later , in October 2019, I developed GCA. Started 60 mgs prednisone. Was put on Actemra in late December, and completed 18 weekly injections, with last injection on April 8. (Discontinued do to persistently elevated liver enzymes.) I was disappointed to discontinue as the Actemra had truly made a positive difference; I felt so normal again.

I’ve been tapering down on prednisone, with rheumatologist guidance, and have been on 15mg for 6 weeks. Still feeling great. This week I was supposed to taper down another step. 🙁

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cmgarner
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Morning, You're in the States I am in England. I received the Shingles jab in Jan 2018. I was diagnosed with PMR Dec 2019...not sure if it was the vaccine from the Shingles jab that caused the PMR or not. Could have been the Flu jab that I had done Sept 2019 then the PMR started in the Dec 2019....who knows !! I've been having the flu jabs for yrs and yrs with no problem, however, it only takes a certain vaccine that doesn't agree with us to cause major problems. I don't think this will ever be proved though as it would take many of us to experience PMR/GCA after having the vaccines. Sadly, like you, I went on to get GCA once I started to taper from 15 mg with the PMR. I managed to get to 8 mg and experienced jaw pain when eating and opening my mouth wide and both sides of top teeth ached and tender head. Before my diagnosis with PMR I had the most weirdest of headaches, one sided on the right side of my head, that started with a tingling feeling. So I'm pretty sure I had GCA lurking in the background. Obviously, the 15 mg might have been keeping it at bay, but on reduction it showed it's ugly head. I was immediately told to take 40 mg for 2 weeks, then 30 mg for 2 weeks, the 20 mg I took for a month and now tapering extremely slowly.

The Prednisone cause the shakes, blurred vision, weight gain, particularly fat face and double chin and bad mood swings, which I hope will go as I slowly reduce. Oh, and appetite is never ending, always so hungry but have to make a real effort to ignore it as I know it's false.

Do hope you're feeling better

Anne

PMRpro profile image
PMRproAmbassador in reply to

Did you have the Shingrix vaccine Anne? The UK is only using the older Zostax now and and probably that is all that was available in Jan 2018. They are very different.

in reply to PMRpro

No idea what was in it but will certainly find out....do you think that could have caused it a year on ?

PMRpro profile image
PMRproAmbassador in reply to

Not really. The reaction would have been sooner than that.

PMRpro profile image
PMRproAmbassador

What a shame - however please get your rheumy to make a post marketing report of an adverse effect. It is only with these that the true incidence of adverse effects can be established, especially in vulnerable groups, such as those with autoimmune disorders like us.

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