Hi from California GCA questions

[Anniegal]

Thanks for sharing so much helpful information. I am new here. Awaiting a heart catherization as my EKG for my GCA biopsy indicated a heart issue and the biopsy was postponed. I feel the amount and duration of prednisone I have been in would probably rule out accuracy of biopsy. Any thoughts on MRI or Pet scan as an alternative? Having heart procedure Tuesday. Dx'd with PMR 3/2019; insisted on follow up re GCA due to headache over temples and eye pain. If I need a stent, the blood thinners will interfere with temporal biopsy results. Looking for options.

My SED rate and Creactive protein have always been normal -- respond immediately to prednisone. Increased to 40 mg prednisone. I have been on prednisone since early March and rescue dose preceding that.

Thanks,

[fmkkm]

Hi Annie,

Welcome! I have GCA going on 3.5 years. When I finally got an appointment with a rheumatologist I had been on prednisone for 2 months so the doctor ruled against a biopsy. In my case, high inflammation markers combined with symptoms was enough to diagnose GCA. If you have PMR already and GCA symptoms, isn’t that enough? Keep us posted on your progress. fm

[Anniegal in reply to fmkkm]

Thanks for your kind reply. The lack of high inflammatory markers makes it a bit more confusing but I def had symptoms. I just got a consult with a vascular surgeon and I think he will support using imaging vs. biopsy.

[fmkkm in reply to Anniegal]

Great you got the appointment with the consult. It does make things more complicated without the abnormal markers, however, you are not alone, there are many on this forum who will have better information in that regard. Responses tend to be light this time of night but as soon as the U.K. wakes up you’ll get some good answers.

🌻

[Anniegal in reply to fmkkm]

Thank you 😊

[Anniegal]

I really had to advocate for myself. l was told for years because of normal labs I did not have PMR... we all have our journeys. Glad to have the wisdom of this group. Chronic crippling pain is very isolating.

[Hidden in reply to Anniegal]

Hi Annie gal, it is known that PMR and GCA can present without raised CRP/ESR. This is a link to an overview which says GCA can be diagnosed with normal markers. It also nods to ultra sound as diagnostic technique. Good look with your catheterization.

ncbi.nlm.nih.gov/pmc/articl...

[Anniegal in reply to Hidden]

Thanks... this is so helpful.

[nickm001]

Did you have blood test before you took prednisone? Were the SED rate and Creactive protein low at that time? After you start prednisone, your inflammation markers should go back to normal.

and re biopsy, you are correct after being on pred for this long, especially as high as 40mg, the chances are your byopsy would come back negative.

[Anniegal in reply to nickm001]

No tests were done done before... only after being given short courses of rescue prednisone; shoulder injections; laser facet procedures using methyl prednisone, etc. Thyroid Rai in 1993 — devastating car accident same day... l have lived with crippling pain for 25+ years. Looking back it is easy to see but I had never heard of PMR and was told I had a central pain syndrome from TBI from car accident. Ironically my hubby was dx’d with PMR 5 years ago. He is doing well and in remission. I am trying to think positive; eating a keto diet, learning to advocate for myself. We are 4 hours from a university med center. Rheum appts take up to 6 months. Hope things will accelerate now that my cardiologist is involved. Better late than never 😊

[SnazzyD]

My GCA was diagnosed on symptoms alone after a very rapid resolution with Pred. My biopsy done 8 days after 60/40mg was negative and my PET scan done 3 weeks later showed nothing. However, I do think with hindsight that there was something going on in some vessels below head level. MRI/PET are affected by Pred though an MRI would be worth doing for larger vessels. This discusses imaging techniques and biopsy. If you don’t fancy it, go to pages 3&4

ard.bmj.com/content/annrheu...

[Anniegal in reply to SnazzyD]

Thank you. I am being referred to vascular surgeon for consult. l will read this.

[PMRpro Ambassador]

Both the MRI and PET scans will also be affected by the duration of high dose pred as they are looking for inflammation and the inflammation will have been reduced by the pred. Anything above 10mg makes PET fairly equivocal as the uptake will be suppressed.

It is possible the angiogram will indicate the presence of large vessel vasculitis while they are in there - though I am not sure. It is possible it is GCA causing the cardiac problem.

[Anniegal in reply to PMRpro]

Yes, my thought as well. My cardiologist is knowledgable about PMR/GCA and I believe this is why he wants angiogram stat.

[gifford7]

I'm in Calif., near Stanford U Med center.

Heart catheterization is invasive mayoclinic.org/tests-proced...

What is the heart problem? Have you asked about first having imaging procedures?

Echo cardiogram; MRA; CTA; PET scan.

I have GCA and had an MRA of chest with contrast to check I don't have aortitis from LV-GCA [large vessel GCA].

My sister also has GCA; a heart murmer was noticed and echo cardiogram and CTA imaging showed she had an aortic aneurysm and aortic valve with regurgitation requiring open heart surgery. see

academic.oup.com/rheumatolo... excerpt:

"Advancements in imaging techniques, including magnetic resonance angiography, CT angiography, PET and colour duplex ultrasonography, have led to improvements in the diagnosis of LV-GCA"

[Anniegal in reply to gifford7]

Thanks for your reply.The EKG led to recommendation to do cath and angiogram. There is a concern about a blocked artery. My cardio is knowledgeable about GCA. I will read the articles you sent. Thanks.

[Anniegal in reply to gifford7]

I am hoping the cath leads to more imaging. Plan to refuse a stint as l see no advantage to that approach. I will be asking tomorrow why no pre-imaging. Excellent question. Thanks so much.

[Anniegal]

I should probably mention I had unrelenting pain that precipitated a thalamic stroke ten years ago. The undiagnosed “PMR” pain impacts my BP. I do not tolerate cholesterol meds or bp meds. Myalgia issues probably related to underlying auto immune issues.Grateful to be out of pain and ambulatory but feeling some anxiety re heart procedure and so many unknowns.