No wonder I am struggling.

[IdasMum]

I have had the blood results back today from last Monday.

The Dr, not my normal Dr, suggested that my CRP increased but not loads.

Well. Back at the beginning of August my usual Dr called me as he was concerned about my CRP level (53.5). I felt okay by the time he called and had put it down to missing a days steroid dose.

My CRP level last Monday was 65.0! (How Dr R thinks this is insignificant I cannot begin to imagine).

Today I am feeling well (ish). I've had a very poor night sleep wise, so apart from the grogginess I don't feel unwell. I have my usual monthly blood test on Weds, will be interested to see what my CRP is then. My usual Dr comes back from his holiday on Saturday. Unless I take a turn for the worse I will wait for his return and make an appointment,

Curious to know what is going on.

[SheffieldJane]

Honestly IdasMum, I got my GCA/LVV diagnosis from little more than feeling generally unwell and my Rheumatologist’s superb intuition. Stick with your instincts and keep pushing. I was diagnosed by specialist ultrasound scan where the characteristic Large Vessel Vasculitis Cells appeared in my left armpit. I was on 3 mgs of Pred and thought that I was climbing out of the woods with PMR - it did not feel like a flare and my cortisol levels were normal.

[IdasMum in reply to SheffieldJane]

I'll talk to him about this next week. x

[Sophiestree in reply to SheffieldJane]

This is really interesting. How did they know to look at your left armpit. So clever.

[Rugger in reply to Sophiestree]

The artery that supplies our arm passes through the armpit, so is relatively accessible - rather like the way they use the temporal artery for a biopsy. When I first saw my Rheumatologist in 2016, she listened with her stethoscope at my armpits, groins, neck(for carotid arteries) and I was most intrigued and impressed at her thoroughness. At the time, I wondered why, as I was presenting with PMR symptoms! It was 3 years later when I was diagnosed with GCA-LVV - in my case by PET-CT scan.

[Sophiestree in reply to Rugger]

Yes, thank you. I was aware, it's just that after doing so many scans, it's good that they were so thorough. I had too many scans to count before an Infectious Diseases Consultant decided to take me on as it was clear there were just too many people all having an opinion. His first port of call was a PET Scan which immediately gave my diagnosis within an hour of getting home that day. I thank him to this day.

[SheffieldJane in reply to Sophiestree]

The technician was mainly concentrating on my head and neck, thankfully she checked both armpits. This doesn’t mean that the Large Vessel Vasculitis is confined to that area however, although my MRIs did not show anything. I was relieved that there was no sign of it in my temples. Like most people, I particularly worried about my eyesight.

[Sophiestree in reply to SheffieldJane]

It's great when you get someone who wants to get to the bottom of something, and not just go through the motions. I wasn't even aware of the biopsy option at the, thank goodness, as from reading all my notes, I believe they were investigating me for cancer rather than vasculitis as I did not present with classic symptoms...