muscular issues which can mimic GCA

[Rubha]

I tapered to 13.5 mg of pred 2 weeks ago , coming down from 15. I have some facial aches and « sensations » in my head. Not a headache but tonight I found a tender spot on my scalp. Am I over thinking a GCA flare ? I know I am hyper, I freely admit it. Any thoughts? Thank you.

[DorsetLady PMRGCAuk volunteer]

Have issues been there since you reduced to 13.5mg- or just come on over the last couple of days? Timing can be an indication of whether is steroid withdrawal or the beginning of a flare, see link, and it’s easy to overthink things…

healthunlocked.com/pmrgcauk...

Have you done anything that might be a reason for issues?

[Rubha in reply to DorsetLady]

I can’t really remember to be 100% honest. I’d say probably since I reduced by the 1.5% . I’ll have a look at the link . Thanks , as always for your input. I know I have a tendency to overthink. 3 out 4 of my grandparents went blind so I have a « thing » about watching my eyesight as did my Dad….no pun intended .

[Rubha in reply to DorsetLady]

Hello there ….I read the link you sent….thanks. I can’t think of anything that may have exacerbated symptoms. Nothing different or new or stressful. My usual swims, gym sessions and general life activities but none out of my ordinary apart from reducing to 13.5 of pred from 3 weeks on 15mg…..needless to say Rheumy wanted me to reduce by 5s ……I resisted and with GP’s agreement had 3 weeks on each 2.5 reduction from the 20 till I got to 15 then I decided 1.5 ……as we say in Scotland ….. »It’s a saer fecht » ……translated…..what a carry on 🙂

[PMRpro Ambassador in reply to Rubha]

Why are they always in such a hurry? Slow isn't slow when it works and the patient feels better. Haud on and keep tha heid ...

[Rubha in reply to PMRpro]

Aye....and I love your scots x

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

Surely is… and a month at each dose would be better, but that’s another thing the Rheumies don’t always agree with..

Hope you get things back on track….

[Rubha in reply to DorsetLady]

I did a month at 17.5 as I had Covid then a month at 15 as I had flu and Covid jabs. Interestingly a neighbour , who is a pharmacist, said a month at each dose but as you say the Docs don't , however , I can be quite "persuasive" ....I'll go for a month from now on 😇

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

Most of my tapers were monthly apart from a couple early days on silly GCA doses which were 2 or 3 weeks… but as I always say was pre Covid and my GP who did most of my monitoring after initially diagnosis and advice from ophthalmology was ultra cautious as it away her misdiagnosis caused my sight loss…

So I was never hassled to reduce more quickly

[Rubha in reply to DorsetLady]

My GP has eventually accepted my research use of this forum and that PMRGCA gives us patients a step up the awareness ladder. I think I"ll have no probs with her. Im waiting for a cataract surgery and a hip replacement....I was hoping to have had a successfil taper for them but hey ho !

[SheffieldJane]

I was also nervous about GCA having had PMR for a few years. I whittled my worries down to specifics and decided it was losing my sight. I now have my eyes thoroughly tested every 3 months and this makes me feel safer my Optician has lots of very good equipment.

[Rubha in reply to SheffieldJane]

Thanks Sheffield Jane…..I have PMR and GCA and have tapered from 50mg of pred. I suppose every scalp tenderness , earache or blurryiness raises question marks. I am on the waiting list for cataract surgery and hip replacement so keeping fingers crossed I don’t have to increase my dosage. Best wishes.

[Viveka]

If it is a flare, symptoms will increase and you will know. If it is a bit of escape GCA, it is likely to grumble on for a while then die down. Just monitor it, and try to get to recognise any patterns.

[Rubha in reply to Viveka]

Thank you Viveka....I have opficians on Tuesday and will be vigilant though hopefully not too overthinking. Cheers