update on my GCA-LVV journey - back to weekly Actemra injections

[DeepThought2]

just want to give a short update on what happened since my last post. As background info: I have been diagnosed with large vessel vasculitis (mainly general symptoms: fever, malaise, weight loss, increased heart rate) in February 2021. I received Actemra from the start and could thus taper prednisolone quickly to zero (July 2021). In full remission since approx. April 2021 and back to normal sport activity since June 2021.

I had Covid in February 2022 (only mild cold symptoms) but thereafter I had some strange symptoms for a month or so which were mainly reoccurring fatigue and heavy legs every 10 days. At that time my serum calprotectin level (indicating inflammation and not being under IL-6 control) was slightly raised again (after being normal before Covid). Symptoms went away again and all was good (also Calprotectin levels in August 2022).

In October several things happened: 1) I increased Actemra injection Intervalls from 10 to 14 days, 2) I had a cycling accident when gravel biking with quite some skin abrasion at one knee and elbow - healed all well but it took some time, 3) I caught a stomach bug and had 4) my 4th Covid jab ( all within 2 weeks). Thereafter I had the same reoccurring fatigue and malaise symptoms (plus increased heart rate) as after the Covid infection - this time it, however, took longer and only resolved mid of December after I started to inject Actemra again weekly and took 4 days 15 mg pred per day.

All good now again (not on the same physical level on the bike as in summer but continuously improving). Looks like external factors (infection, vaccination) might still be able to trigger the disease or at least some of the symptoms. But also good to know that Tocilizumab (and a short pulse of pred) will control symptoms again. I got blood work done before Christmas and we will see how calprotectin looks like. I will now continue to inject Actemra weekly and but try to increase intervals again in summer. Not too much worried about continuing Actemra on a weekly basis as I have no significant side effects.

[PMRpro Ambassador]

There was a thread recently about reactions to the booster Covid jab - the bivalent one. I have had quite severe atrial fibrillation since I had mine, worse than anything I have had before and it has always been worse when the PMR flared. I had to up the pred to 10mg from 7mg to sort it out. I'm on weekly TCZ anyway.

Not a coincidence I think.

[DeepThought2 in reply to PMRpro]

that’s interesting- I had the bivalent BioNTech/Pfizer

[PMRpro Ambassador in reply to DeepThought2]

Yes, me too ...

[KASHMIRI1 in reply to PMRpro]

Interesting l had the same atrial fibrillation after my last Pfizer vaccination . It's calmed down now.

[PMRpro Ambassador in reply to KASHMIRI1]

Was that the bivalent one?

[KASHMIRI1 in reply to PMRpro]

Yes l think so. It's much calmer now

[PMRpro Ambassador in reply to KASHMIRI1]

Hope mine calms too!!!

[WaltzG]

Hi out of interest how do you measure increased heart rate. ?

[PMRpro Ambassador in reply to WaltzG]

I'm very low tech - I can feel it and check with a pulse oximeter. I only worry if the rate is too high and then I'd call an ambo.

[DeepThought2]

Dear SharonY. I have a Garmin watch with heart rate sensor (comparable to apple watch or fitbit) - and it calculates resting heart rate and you also see your heart rate during activities. Both went up a bit since October but they are going down again now. Could be related to the other symptoms/slight flare or could also be a result of not exercising during that time.