Imaging with Vasculitis

[PMR2011]

videocast.nih.gov/Summary.a...

videocast.nih.gov/Summary.a...

Great NIH talk on PET scanning and large vessel vasculitis. A bit technical but worth the watch.

[Labradorite]

Thank you for posting the link to the NIH video. I skipped the first four minutes of introduction and have started watching the presentations - very interesting.

[PMRpro Ambassador]

Thanks PMR2011 - I've edited it to give the direct links. Hope you don't mind.

[Ranchero]

What a superb find PMR2011. Technical, yes, but members should watch and ignore the bits that they don't understand and concentrate on the other elements; it answers a lot of questions.

Makes me wonder about mis-diagnosis (and subsequent overuse of corticosteroids) and lack of clinical/imaging examination by UK medics.

[PMR2011 in reply to Ranchero]

Definitely not just UK. US docs are very unaware of inflammatory vascular issues. I really wonder if there are large numbers of people who are struggling and never get diagnosed!

[SnazzyD]

This was fascinating, I was glued. GCA for grownups, showing it needs much more thought and enquiry than the black and white simplistic categorisation that condemns many people to misery or mismanagement. Also makes me think I’ve had vasculitis coming and going since I had chemo in 2004, having looked back at old notes I made about my symptoms that were disregarded. It also implicates my cyclical neutropaenia (their reference to GCSF) where my counts drop every 3 weeks and then my body goes into overdrive to get the counts back up. My Rheumatologist didn’t even want to discuss my neutropaenia but my haematologist said it is almost certainly linked but he said they aren’t clever enough to know why yet. All this sent me fizzing with lightbulb moments, swiftly followed by oh bugger.

[JanetRosslyn]

Absolutely fascinating stuff! Thank you

[MaryA_]

I too live in Maine. Just want to say I just watched the video and it was pretty awesome and informative. Thank you for posting.

[PMR2011 in reply to MaryA_]

Wow, I didn’t realize. Where in Maine are you? Not much rheumatology choices in the state but the outfit in Portland is pretty good. They had patients enrolled in the GIACTIC (spelling?) study.

[MaryA_ in reply to PMR2011]

I live in Farmington. I did see a rheumatologist in Waterville at the beginning. ( 3 years ago). But not since then , pretty much on my own I asked my oncologist if he could help me find one , I’m down to 3 1/2 mg and just had a flare over the holidays. I found the video very interesting, I’m a retired radiology technologist. I have 4 PET scans a year and the PMR was mentioned in two of them Made me smile 😃 proof!

[PMR2011 in reply to MaryA_]

So no GCA on the scans? That’s good! You’re doing fine to be at 3 1/2 mg, tho sorry about the flare. I think I might have had a flare too. We are “naughtier” over the holidays with diet and stress. I’ve been on this journey for 9 years. Am currently on Actemra and doing well with that. Off Pred for 1 year.

[MaryA_ in reply to PMR2011]

Wow, that awesome, but 9 years is an awful long time. Wondering why doctors are telling us it’s a two year journey? Christmas was a little stressful this year. I don’t know about Actemra. I will read up on it. At times the top of my scalp is very sore, but doctor didn’t want me to have a biopsy. He just put me on a high dose of prednisone because I was so afraid of loosing my eye sight. I am doing some exercises for muscle strength. Do you still work? It all happened to me about a year after I retired. Maryanne. Thanks for texting me.

[PMRpro Ambassador in reply to PMR2011]

GiACTA is the name of the tocilizumab trial

This is a report of the ongoing long term study:

acrabstracts.org/abstract/l...

[PMR2011]

Yes, I’ve worked full time all the way through. Have scaled back from a more stressful job tho. Agreed, keeping active but balanced is key.