Oh-oh... returning GCA nausea?

[montebello]

Hi all,

I'm a GCA patient, diagnosed in AUG 22. I started on 60 mg PRED and have tapered down to 20 over the last 8 months. A few weeks ago, I went down to 17.5 MG. Unfortunately, I've been having increasing GI distress since going down to 17.5 MG -- loose bowels and now increasing nausea. I seem to remember having these symptoms leading up to the AUG 22 diagnosis. I'm also continuing to fight the fatigue and vision issues that I've written about before.

So here we go again with the age-old question. I wonder if these GI issues are from the PRED or BP meds that I've had to add OR are they the beginning signs of a flare?

Thanks, as always!

[PMRpro Ambassador]

Were any investigations carried out to look if you have LVV? Large vessel vasculitis, affecting the major arteries in the trunk? That can cause GI effects and if it is still active and your pred dose is now too low, it could account for it.

[montebello in reply to PMRpro]

No, I have not been evaluated for LVV. What might be done to explore this more fully? What tests, bloodwork, etc?

Thank you once again

[SheffieldJane in reply to montebello]

My LVV was diagnosed by a specialist ultrasound scan. The abnormal cells appeared in my left armpit. I am having an MRI scan today because of on-going GI issues ( nausea, occasional vomiting, diahorrea and lower right abdominal pain. Nothing showed in colonoscopy and capsule camera investigation except some age related, diverticula disease. I was given Actemra for 1 year in the U.K. which helped the reduction of Pred but coincided with the GI issues. My diagnosis is described as GCA/LVV. My GCA is extra cranial - not in the head. I was given 40 mgs of Pred. just the same.

[montebello in reply to SheffieldJane]

Thank you. Wishing you the best in your upcoming tests

[montebello in reply to PMRpro]

Another question.... is the treatment for LVV and GCA the same?

[PMRpro Ambassador in reply to montebello]

Yes - same treatment, pred, but in the USA I suppose there is a good chance of Actemra being offered.

The primary test is probably PET-CT but it isn't that reliable when you are still on pred.

academic.oup.com/rheumatolo...

[montebello in reply to PMRpro]

Thanks PmrPro