Stilll struggling to find is it gca?

[Rajuguide]

My wife completed one year journey, with symptom like gca , started prednisone 60 mg with actemra weekly , stop actemra after 4 months , continue struggling to reduce prednisone, now on10 mg after one year ,all testing done pet scan ,ultra sound , head scan , allergy , lumbar fluid , and treated, by 4. Rheumatologist , 3 opthologist , cardiologist, neurologist, Doctors confused , is it gca or not , symptom still up down ear , head block , pressure on eye , throbbing in head , struggling to go down from 10 mg prednisone with various tapering method from last 3 month , Steriod long term use effected body , moon face , hair loss , leg weakness. Diabetic , now dr started dupixent injection twice a week , but no effect . Healthy , charming Life have taken u turn at age 70 , little hope to come out from this confusing situation!

I 🙏 thanks everyone on fourm, for guidance. our discussion help to understand theGCA in better way ,

[fmkkm]

Hi Rajuguide, I am sorry for all your wife’s struggles. It has taken me six years to get GCA under control. I am now taking 2.5 mg prednisone and have gotten to this point with a lot of patience and a complete diet makeover to avoid the side affects of prednisone.Without the diagnosis of GCA from her doctors it must be very confusing to know how to manage her condition and how to continue. If they decide it is GCA then you should know that the disease will dictate the course not the reduction schedule from a textbook.

My best to you and your wife as you navigate this difficult time. f/m

[PMR2011]

Sounds as it’s been difficult. Was she ever without symptoms and what was she taking then? Also curious why Actemra was stopped after only a few months? And one more question, was the PET scan done after she’d started meds?

[PMRpro Ambassador in reply to PMR2011]

In an earlier post about 3 months ago we were told that the cytokines they measured as high were not IL-6 (IL-10 and IL-13 if I remember rightly). Actemra does not work to lower those cytokines which are not implicated in GCA anyway. Actemra ONLY works against IL-6, nothing else.

[Rajuguide in reply to PMR2011]

Thanks for ,your continue interest and giving advice in my wife case from last 7-8 months.Actemra was stop after 4 moths due to side effect too much burning and pain after taking it and no benifit .

Pet scan , whole body , mri brain , mri skull ,was done after 4 -5 months of prednisone and actemra

She never had totally symptom free week during last one year . Aspirin mini , and Tylenol . Give relief .

She is stuck on 10-9 mg circle , prednisone, from last 3 months ,

Doctors have different opinion about it to be GCA.

You advice is most welcome.

Thanks

[Zebracorn]

So sorry for your wife’s struggles. I am 3 years in, still on Actemra and 1.5 prednisone. Achy all the time. I was wondering if your wife ever had a temporal artery biopsy? I resisted because my headache had cleared but relented and glad I did. Although the GCA was no longer active in the temporal artery the tell tale scarring was evidence to confirm the GCA diagnosis.