GCA in new area?

[HappyDiamonds]

Could anyone tell me whether it is possible that I now have GCA inflammation on my right hand side after being treated with Pred for it on the left hand side since May last year. I have a new slight swelling and tenderness on the right side and symptoms on the left. I had a flare at the end of January and the Rheumy put me up to 12.5mg from 10mg for a month. The plan being to then reduce to 11mg and 1mg a month from there on. To be honest I increased to 15mg for the first week then down to 12.5 but 12.5 is just not enough I have had symptoms since Sunday, got up with it Monday and took another 2.5mg during the afternoon (on top of 12.5 am) and this helped. Went back to 12.5 Tuesday and by about 4pm I had symptoms again but felt ok when I got up this morning. Not quite sure what is going on and why 12.5 was good for me before I reduced to 10 and 10 was ok for 2 weeks but now I feel the need for 15mg. The other thing that is worrying me is I have a lipoma in my neck on left which is only evident or troublesome when the GCA is being a nuisance but the Rheumy has dismissed this. It swells up and then disappears when steroids are increased. Really strange.

[SheffieldJane]

My guess is that this is a flare and you are being under treated currently. My GCA/LVV was visible, thankfully, in my left armpit, during an Ultrasound Scan. I don’t believe it is confined there, it could be anywhere in my peripheral arteries ( not my Aorta thankfully, I had that tested). I would want another opinion on that Lipoma. How long have you had GCA?

[HappyDiamonds in reply to SheffieldJane]

Thanks for replying. I was diagnosed May 2020 although I had probably had GCA for about 6 months or more before diagnosis, was told I had a trapped nerve. My GP measured the lipoma January 2020, one GP thought swollen gland and another thought muscle. MRI at Hospital in May showed a Lipoma according to Rheumy but Im not convinced. If I need to go back to 15mg to feel well thats what Im going to have to do, unfortunately though the Hospital will be threatening me with a sparing drug again which I don't want.

[SheffieldJane in reply to HappyDiamonds]

I would do the same. This is still early days for GCA, I’m not sure why they are getting their knickers in a twist. Stick to your guns.

[PMRpro Ambassador]

Pred injections are used to shrink lipomas - it increases the metabolism of the fat that forms them so it also possible that oral pred does the same. No idea why a flare of GCA leads to it worsening though. Unless it is the other way round - more pred means less GCA activity and less lipoma?

[HappyDiamonds in reply to PMRpro]

Thank you. Been to GP who says the tender spot on R/H is probably a nerve and the lipoma is being pushed by lymph gland inflammation. She took bloods to check CRP which was 5 a few weeks ago up from 0, but would only consider upping steroid to 15 if CRP is something like 20. Says I don't and haven't ever presented as typical although knows I do have GCA (ultrasound) but doesn't want me to increase Pred. in case its something else and the Pred. masks it. Have to contact Rheumy at Hospital which is proving very difficult as phones are playing up. Strange that this 'nerve' and lipoma only gives me problems when I have GCA symptoms. Neck and shoulder aching too but told I don't have PMR as I can raise my arms above my head. Also I was unable to wear my glamourous beanie hat when walking the dog during recent cold spell, or wear a shower hat, sometimes my glasses are unbearable too. Got to wait for Rheumy now!

[PMRpro Ambassador in reply to HappyDiamonds]

Oh for goodness sake - if it goes up at all that is an increasing inflammation trend. What is it in the UK - early intervention seems a dirty word!

[HappyDiamonds in reply to PMRpro]

Im so frustrated and miserable but at least Hospital just called to give me a phone appointment tomorrow afternoon with a Nurse and she will decide whether she needs to refer me for a Rheumy phone call. Wish I'd blooming just upped it and kept quiet.

[HeronNS in reply to HappyDiamonds]

I hope you get some sensible advice soon. All your symptoms seem to point to increased GCA activity, from what I've read on the forum over the years. Take care.