I have posted re my recent GCA diagnosis a few times, please refer if nec.I have been on 40mg pred for a month as advised by rheumy. His advice is to stay on 40mg for a minimum of one month then drop to 30mg for min of one month.
I would say my symptoms generally have dropped by about 85-90% since initial pain. The main area of pain was and has always been in front of my right ear with the odd twinge in the ear.
But in the last few days and right now I have been getting a bit more pain in front of my ear, as well as the odd twinge in my ear, a bit of pain up towards where my biopsy scar is, and tinnitus.
This morning it occurred a couple of hours before my pred dose was due, but tonight it is occurring again and it is within 10 hours of taking pred.
I am reluctant to drop to 30mg after one month so have stayed on 40mg.
I'd rather not have this pain at all...it is not severe but doesn't seem right, and I'd rather not have it at all.
I will contact rheumy on monday but wondered if you thought this is normal after only one month on pred, or does it sound like the dose needs upping?
I don't like the thought of upping the dose, and he recommended 40mg as I have no eye issues.
Thanks!
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kalgoorlie
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This is a rough time for you and a time where your mind is just not at rest....still feeling symptoms. I was Dx back in 2019 and two weeks ago hit 2mg but I've been on Actemra the whole time as well.
Your instinct is good, talk to the doctor. I can only tell you that my rheumy went a lot slower than that. You need to be safe and assured. This forum made me a better patient (as well as saved my sanity), so I spoke my mind to my doctor. Slow! Don't take chances with your vision. My best....💞
If you still have pains after a month - then either dose is not quite enough … and it certainly should be lasting longer that it seems to be.
Although I’m not convinced about splitting GCA doses, certainly in the early days, that might be an option over the weekend and see if that helps… until you have chance to speak to your Rheumy.
But can you put hand on heart and say you haven’t overdone things and caused the issue.
I don't think I've been overdoing it at all, I am feeling far less fatigued than I had been, and am just at home most of the time, with odd gentle walks here and there. Should I try what you suggest, take a bit more pred now, although quite late, then my normal 40mg due at 10am tomorrow plus a bit extra again in the evening? How much extra? 5? Or just up my 10am dose to say 45? I was on 60mg for the first week, but that was very early on, and it did my head in, I think the pain was reduced to 80- 85% then, I'm sure I don't need to go back up to that.
You could try an extra 5mg now - and see how things are in morning… and then take 45mg tomorrow/Sunday. If you think it’s too late tonight, then leave until morning and just take 45mg Sat/Sun..
The 5mg has definitely helped, thanks again. This morning I can feel the ear pain...dull but persistant ... starting up again so will take the 45mg at 10am and see how long that lasts. I am going to ask if a mri/scan might show up what is going on in/around my ear.
I can only go by my own situation. I didn’t have any eye issues either but my rheumatologist started me on 60 mg prednisone. I no longer had any GCA pain within hours. I was kept on 60 for 2 weeks, then 40 for 2 weeks then it was a lot slower after that. I never had any GCA pain. . Of course prednisone side effects were a whole different story.
I’m thinking maybe he needed to start you on a higher dose. I understand how you feel. I never want to go on 60 again but you do what you have to do.
This site really helps. I eventually flared at 10 mg but I blame my doctor for that. At that point he kept wanting me to reduce even though I didn’t feel well but I didn’t know any better. I did what he told me. I read everything on this site and know so much more than when I started.
I was put on 60mg for a week and then kept on 40mg for 6 weeks before reducing to 35mg. I certainly needed every one of those weeks.
I agree with DL that if you can’t get medical guidance over the weekend, 45mg is worth doing to see if it helps and to support you better. Regards the biopsy scar, mine gave me pains for a year, especially when I was having withdrawal symptoms for a week after I dropped my dose. After a while you get used to what is the normal ebb and flow and what is flare.
Thank you so much, especially re the scar, it has healed well after nearly 3 weeks but does feel a bit sore occasionally, hopefully that will settle in time.
A wound takes months to mature so the surface only tells part of the story. When I used to see wounds of all sorts, people would often lament that it still hurt even though it looked good on top. It’s like the much described swan looking serene on the surface but paddling like crazy underneath. The biopsy procedure cuts through other layers that all need to heal, plus some nerves will have been cut and these can be troublesome for some time. I’d say mine didn’t feel normal for at least 18 months but it depends on what they cut at the time. Scar pain isn’t always a good barometer of GCA flare alone but it can get mixed up in the crossfire of a flare because there are other arteries in the area. Time helps weed these out as the wound settles .
Thanks for this, SnazzyD. I had been slightly worried by intermittent soreness along my biopsy scar which is also a bit scabby towards the ear. I didn't realise it can take a while to heal completely.
What you need to worry about is persistent or increasing pain other than when you poke it or catch it. Also, if the scabby bits weep or inflammation and puffiness hang around or increase. Mine didn’t heal quite for a few weeks and then my husband found a hair had been bent over in the sutures and was growing down into the wound. Once that was fished out it was fine.
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