GCA new area of tenderness on touch: I have been... - PMRGCAuk

PMRGCAuk

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GCA new area of tenderness on touch

HappyDiamonds profile image
7 Replies

I have been on 10mg Pred for 2 weeks after tapering from 60mg originally for GCA only and have felt well. This morning I washed my hair in the shower and felt a very tender area above my right ear just inside the hairline. My GCA has always been on the left hand side only. I hoped this mornings Pred would help but it hasn't and I now have the same on the left side and I can feel the artery there. Its not painful on either side unless I touch it. As far as I know I haven't knocked myself. Does this sound like the beginning of a flare, should I be concerned? Thoughts welcome please. Thank you.

7 Replies
jinasc profile image
jinasc

You joined July 2020 and I assume you were diagnosed around that time as your profile does not say.

If I was you I would up your dose to 20mg and get in touch with your Rheumy pronto. You do not want it to escalate and have to go back to either 60 or 40mg.

It is not uncommon to get a couple of 'flares' with GCA within the first 18 months.

Please contact your Medics asap and if you get any vision disturbance, A&E.

SheffieldJane profile image
SheffieldJane

My Rheumatologist always examines that sort of area. I think it’s significant.

PMRpro profile image
PMRproAmbassador

Do please contact your doctor - to get to 10mg from 60mg in under 8 months is quite fast and GCA is prone to flares in the first 18 months so it is quite possible it is a flare. Better safe than sorry.

HappyDiamonds profile image
HappyDiamonds

Thanks everyone for the replies. I have tried the Hospital several times this morning but they are not replying and the usual answer machine is switched off. When I eventually got through I got a recorded message saying they were busy and to try later. So I contacted my GP who said she doesn't think its GCA because I don't have a headache, and to watch for a rash as she felt it was more likely to be nerve pain/shingles. By coincidence I have a blood test tomorrow and my GP will ring me Thursday morning with the results and to see how I am and contact the Rheumy herself if I haven't been successful. Until then she doesn't want me to up my steroids. Strange really as I felt very nervous reducing from 12.5 to 10 2 weeks ago.

PMRpro profile image
PMRproAmbassador in reply to HappyDiamonds

Sorry to disillusion the GP but 40% of patients with GCA may not have headache - certainly not at the start. But she is right - keep an eye out and keep trying the hospital.

HappyDiamonds profile image
HappyDiamonds

Well its definitely a flare and not Shingles as I now have original symptoms but much milder as I believe I caught it early. Hospital phoned this evening and suggested I go back up to 12.5mg for 3 weeks, then reduce to 11mg for a month and continue tapering by 1mg each month from then on. The Doctor didn't want me to reduce by 0.5mgs which I would have preferred. She again suggested I try MTX but Im holding out on that. They are very helpful and kind but I really can't understand why they think Im not doing very well. She said I had slowed the taper down twice before, first drop from 60 to 50 after 3 weeks didn't go well so they reduced the drop to 5mg instead of 10mg every 2 weeks and I stayed on 30mg for a little longer than 2 weeks. Now 12.5 to 10 has given me symptoms. 10mg is simply not enough to control things at the moment. Had my blood test this morning and my CRP was 5 after being 0 for 6 months. I feel a bit deflated and kind of guilty that I can't conform. I would love to get of the steroids as much as they would like me off them!

PMRpro profile image
PMRproAmbassador in reply to HappyDiamonds

You don't need to feel guilty - their expectations are unreasonable. Patients are not mechanical objects - biology isn't like that. And if doctors don't know and appreciate that they are in the wrong j

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