Advice please. I have GCA, slowly tapering preds, currently on 6mg, and weekly TCZ.
I started a cold last Monday (8 days ago) and it’s def not Covid (done 3 negative tests in last 8 days) but it’s not getting any better and I feel very fatigued. Should I up my preds and if so by how much and for how long? Also should i pause the TCZ (my weekly jab is due tomorrow) and if so for how long? Thank you!
Best to ask your rheumy team about the TCZ, I missed a week due to a UTI but that did require antibiotics, They said it was fine to resume once the symptoms were gone.
I would take a bit more pred - can you ask the rheumy team about that too?
Oh yes, I rang the Rheumy Nurse advice line first thing this morning. Went straight to voicemail and I haven’t had a response, so presumably they’re on strike.
Oh excellent. NOT!
If you can't get an answer tomorrow, I would add 5mg as we suggest for flares and see how you do on that, You can take it for up to 10-14 days and drop back to where you were. And I'd miss the TCZ for this week,
Thank you! Still nothing from the Rheumy nurses (they work 10am-4pm), so I’ll increase my Preds tomorrow morning and skip the TCZ as you suggest. Hope to start feeling better soon and for something more than the 2 hours sleep I got last night – and a call from the Rheumy nurse some time tomorrow would be good. 🤞
Will report back....
Just got a call from a Rheumy nurse: advice is not to increase Preds as that’s only needed for a flare, and to skip today’s TCZ jab.
I slept for 8.5 hours last night with the help of half a promethazine and took 10mg this morning, and am feeling a bit better. Think i’ll take the 10mg for another day or two until I’m sure the cold is going/gone.
"advice is not to increase Preds as that’s only needed for a flare"
Not quite but hey-ho!
Yes, i confess to an eye roll as I was being told that!
My GCA symptoms have always been in my sinuses and throat, like a bad cold. The 3 times I flared my first thought was that it was just a cold, followed by possibly covid. I tested negative for covid as well. When I did not improve after 10 days or so, like you might expect with a cold, it became evident that this was a GCA flare. So, talked to rheumy and upped the pred. I stopped TCZ one week, but then contined. I improved quickly. After some tapering over the past few months I'm now on 2mg pred and weekly TCZ, and plan to continue at that level for some time. Each time I went off pred. I flared, so a low dose of pred. will be with me for some time. So, what PMRpro says above makes sense to me and would track with my personal experience. Hope you feel better soon!
I’ve never heard of GCA symptoms being similar to cold symptoms, that must be very confusing!
Thanks, yes, I’m feeling much better having increased my preds to 10mg for 3 days and paused the TCZ. The cold is definitely on its way out, so I’ll drop back to 6mg and start my slow taper down to 5mg in a week or two.
Thank you - to all the contributors on this forum.
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