Hello, I have GCA and PMR for almost 2 years now. I've tapered down to 10.5mg, but while on this dose, I keep getting headaches on the left side of my head in the evening. I've been at 10.5mg for 2 weeks now. I won't go lower until headaches resolve. Do you think I may have reached my lowest possible dose? Is this a "normal" dose to stay on longer term with GCA?
I also am having jaw pain again. It's all on the left side. Should I go up on my dose?
Thank you as always
As pains have returned about 2 weeks after a drop in dose, that’s about the right timing for your body to realise the current dose is not quite enough… so could well be a flare.
But as it’s only one-sided that may raise the question, is it?
To be on safe side I think I’d be inclined to follow procedure in the link re a flare - and then drop back to 11mg - stay there for a month and re-evaluate the situation.
healthunlocked.com/pmrgcauk...
It could also be a TMJ issue, so maybe get that checked as well-
webmd.com/oral-health/tempo...
Thank you. I agree. I forgot to mention that I had dental work right when this started. I didn't think of that as a cause, but it could have set off a flare. It's even on the same side the 2 crowns were replaced. So I will follow the flare advised you attached. I'll also check out the TMJ situation. Thank you for your quick response! I don't know how I would navigate this disease without your help.
It doesn't mean this is your forever lowest dose - it means it is what you need for now. The disease activity in GCA and PMR seems to wax and wane with the peaks being ever lower overall. Disease activity changes over time - and generally falls slowly over a period of maybe 4 or 5 years, sometimes longer, to zero and in parallel the pred dose falls.
Otherwise - I agree with DL.
Thank you, this makes sense and helps. I forgot to mention that I had dental work done when this all started. I didn't think it could have caused it but my husband thought it might have. So I will treat it as a flare as DL suggested.
Could well have done - never underestimate the effect of that sort of thing.
yeah, I think it did it.
I'm in year five with GCA....pred, and Actemra. There were times when I 'dragged dirt' and sometimes felt mildly 'up and bouncy.' I think the roller coaster ride is a great part of what made me cling to the forum.... I always found someone experiencing the same thing. I was fortunate that medical or dental procedures never seemed to trigger anything. It is just confounding, isn't is? One week up and then down....I gave up trying to figure out why. If I was worried, I went to the doctor but otherwise rode the bucking bronco. You are sharp and in tune with your body.... my best💞
Thank you Grammy. You are so kind. Yes, just when I thought I was doing good, bam! Back down. We really need each other here. I agree. Your words always help.
I'm so thankful for all of you....it so important for us to know that when we 'go back down' it means we only have one direction left and that is back up.....and it will be so!!! It is important for us to know we are never alone in this journey. xo💞
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