I have been tapering well according to NHS guidelines since February when diagnosed with GCA. Since July I have been tapering from 10mg by 1mg per month. On Monday of this week I took my first 6mg dose intending to follow DSNS method. I have mentioned on a couple of zoom support group calls that I have had intermittent ear twinges and a bit of dull pain around my ear for a few months. But it hasn't affected my day to day life and I've not been too bothered by it. Rheumatologist didn't think this was GCA flaring, and sent me to ENT for tests which I had but they say ears are fine.
Ear pain is how this all started back in February when I had pain front above and in ear then it rapidly extended to jaw claudication and the rest is history.
So I have been cautious in monitoring this ear pain over the last few months. To be honest it seems to have increased as I taper the pred.
On Tuesday of this week I was due a blood test as a pre-requisite to a rheumy phone consultation next week. I (rightly or wrongly) decided to wait until after the blood test to take my daily pred dose, which would have been 7mg. However during the day I was conscious of increasing dull ear/temple pain and by the time I had had my blood test in the afternoon was feeling quite uncomfortable and decided that this felt like a flare, not the usual twinges. When I got home I decided to take 10mg pred and the pain settled. But today the dull pain is still there although somewhat milder than yesterday, so I took 12 mg (flare protocol 7mg plus 5mg), but it doesn't seem to have made it any better than after I took the 10mg yesterday.
Today I got the blood test results and CRP is < 1,which is good but doesn't help with ascertaining whether this is a GCA flare or not!
Is it too soon after only one day of upping my dose to try to work out what this is? Should I give it a bit longer? It might of course be something else going on for which pred is helping but as I said, ENT say my ears are fine - albeit just did a hearing test and looked inside my ears - no scan or anything!
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kalgoorlie
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I think the paper I flagged the other day about GCA relapses mentions that the markers also tend to lag behind the symptoms. As we have said for years.
I have GCA and deal with flares PLUS the symptoms you have described...I sure would take a stand. I would have reacted as you have, and your concerns are justified. The flares can be too costly and sometimes it takes longer to get back on track if you aren't taking a high enough dose. I hope you pursue this ~~~~ DorsetLady and PMPpro have given you some great guidance and material. I ,too, had ear pain and healthy ears. My best💞
Continuing this post...I have now been on 12mg for 2 weeks. (up from 7mg). The dull temple pain and ear twinges are stiil there....mild but persistent and more or less constant. Right side only really, with the odd very minor twinge in left ear.
I had a phone consultation with a rheumatologist one week ago and she thought it most probably was GCA flaring but really just focused on telling me how to taper from 12.....1mg per month. She didn't suggest taking a much higher dose to see if the pain went away. I know that in July when I was on 15mg I didn't have this dull temple pain and I tapered to 7mg ok since then although the ear twinges never really went away.
So I don't really know how to address this. I am inclined to go back to the rheumatologist and ask for a face to face. But I have had four different consultants...so maybe I should ask for the top one in charge. I don't want to have to considerably up the dose if it isn't actually the GCA that is causing this. ENT sent me away. Should I ask for some sort of scan? Which department? My CRP 2 weeks ago was <1.
If you want more than 2 replies (DL and me!) you would be better posting as a new thread so more people will see your new reply.
So a rheumy says it is probably GCA flaring - and tells you to REDUCE the dose of pred which is already obviously slightly too low to contain the inflammation being created? I've heard it all now!!!
I don't think any scans are likely to help. The CRP isn't reacting either yet - not that I am surprised. And ENT aren't really up on GCA. To have a dx of GCA in February and be down below 15mg already is very fast. If it were me, I'd go back to 15mg until all is resolved and then taper VERY slowly. But that depends on you having enough pred to do it.
Is your GP practice any help at all or do they chuck it all back at the rheumy department?
Thanks for reply you and DL will do! No I am under rheumy, GP only gets asked to do blood tests. I think my GP would help if I ask. I went up to 12 from 7 according to flare protocol. If I try 15, how long before I would be able to gauge whether it is enough? That's my problem really, I want to know whether it is actually a flare or something else....
Then please speak to your GP, hopefully they will give better advice/support than you had from Rheumy.
Usual advise from us for a flare is to up dose for 7-10 days, although you can stay for up to 14 days without impacting drop back down. But the fact it hasn’t improved that much using that protocol is a bit disconcerting. It either implies it may be GCA and more Pred is required… or that is something else altogether. Which leaves you in a bit of a quandary.
You could do as PMRpro suggests and try 15mg - maybe suggest that to GP - and it probably requires at least another fortnight. Sometimes it’s just trying the obviously first - and see what happens.
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