Advice please

[theresa49]

After 9 years since GCA diagnosis & finally down to 3.5mg prednisolone, I was beginning to feel that my GCA was going into remission. Then I contracted Covid a month ago & was very poorly despite being fully vaccinated. It took 3 weeks to recover but now I seem to have gone right back to square one with symptoms of GCA. Left sided headache, feeling unbalanced etc. I wondered if anyone else has had a similar experience after Covid? Any advice would be much appreciated.

[PMRpro Ambassador]

I suspect it is not uncommon - and Long Covid has a LOT of commonalities with forms of vasculitis. Are you really fully recovered otherwise though? My much younger, fit daughter caught it from a patient and was ill for 2 weeks before trying to go back to work and being sent home for another 2 weeks because she wasn't over it.

Have you increased your dose? Did you increase your pred in line with Sick Day Rules while you were ill?

[theresa49 in reply to PMRpro]

Thank you for your message. On reflection I should have increased my steroid dose whilst ill but didn't!! I have now increased my pred to 10mg hoping that will reduce the inflammation.

[PMRpro Ambassador in reply to theresa49]

And you ARE in contact with your doctor I trust? GCA isn't to be played with ...

[DorsetLady PMRGCAuk volunteer]

Many have mentioned similar, so think you probably need treat as a flare -have a look at advice in this link on how to deal with it -

healthunlocked.com/pmrgcauk...

In hindsight you probably should have followed sick day rules -but it’s a bit late now… but here for info -

medicinehealth.leeds.ac.uk/...

[SheffieldJane]

I had Covid for 10 days before going to visit my family in Australia for 5+ weeks. I was aware of being unwell during the journey ( fasting helped) and really needed the airport assistance, I did do the sick day rules and increased my Pred dose for a few days. Once in Australia I was able to do an old fashioned rehabilitation, staying by the sea ( literally ) and keeping children’s hours. I was aware of balance issues and dizzy spells. It’s a nasty virus. I gradually got stronger and at the airport I completely forgot about airport assistance and declined it because I didn’t need it. I hope you recover similarly. You really need loads of rest and simple light, nutritious foods - minimum stress.

[theresa49 in reply to SheffieldJane]

My GP advised increasing my pred to a "dose that decreases the symptoms" & that I will probably have to take steroids for the rest of my life! Yes, I think rest & trying to stop stressing about it will help, thank you for the advice.

[PMRpro Ambassador in reply to theresa49]

Most doctors' crystal balls don't work! Even at this stage he can't be sure without doing the right testing to see how your adrenal function is and even then there are people who have been on pred for well over 10 years who were able to get off pred.

Either way - no point stressing about it.

[Slsslssls]

same thing happened to my husband and his numbers were off the chart. Both his rheumies and his primary said covid was the cause and to wait it out rather than changing prednisone dosage (5mg). Weekly blood test showed his numbers returned to normal 3.5 weeks after first showing signs of covid. Side not; he was admitted to hospital early on where the gave him large dose of prednisone and redesivir as part of treatment.