Has anyone had a biopsy for GCA while on prednisone and tested positive? being on prednisone for so long, I'm wondering if the biopsy is worth the risk if on prednisone
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I went to the surgeon and he advised not to do a temporal lobe biopsy while on 12 ml of prednisone and 4.5 ml Low Dose Naltrexone(LDN) Because it could give a possible false negative. Instead I was referred to a specific Ophthalmologist who is supposed to be able to see if I have GCA. So far she could not see anything but could not rule that I won't have it in the future.
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That’s very interesting about the eye specialist checking for GCA, first I’ve heard of that. Any more information would be appreciated.
I was seeing Kaiser’s regional corneal specialist for epithelial basement membrane dystrophy disease when I developed sudden onset PMR. On my next appointment my ophthalmologist reassured me I did not have inflammation/GCA. Then on our next evaluation he diagnosed inflammation in my eyes from allergies; not GCA. Bottom line, there is a way to check for inflammation of the optic nerve by a skilled ophthalmologist.
I wish I'd known all this before. I couldn't get my biopsy until I'd been on 60 mg of prednisone for 10 days. Total waste of time because of course it was negative. All my symptoms pointed to GCA though so that's what they diagnosed me with anyway.
I was seeing an ophthalmologist regularly for uveitis before PMR was diagnosed. He saw inflammation inside my eye all the time. When PMR was diagnosed, my ophthalmologist would also check for "evidence" of GCA. I'm not sure what he was looking at but he always reassured me that he didn't see any evidence of GCA.
I guess an ophthalmologist can visualize the optic nerve. When it is being deprived of blood flow then it changes. I was always on a relatively high dose of prednisone for PMR anyway so I stopped worrying about GCA.
I had a biopsy for GCA while on 60 mg. of prednisone. I had just been released from the hospital and had to go to an outpatient facility to get the biopsy, they said it was the only way to confirm GCA for sure. The biopsy did confirm it, I had no issues with getting the biopsy while on prednisone. I am now being weaned off prednisone (down to 9 mg) and have started 80 mg of Actemra by injection every two weeks, so far doing ok.
I hope Actemra works for you.
Your Actemra injection dose is probably 162 mg. As far as I know, that is the only dose available by injection.
For GCA, 162 mg administered subcutaneously every other week followed by an increase to every week based on clinical response.
I do a monthly infusion. When Actemra is given by an IV infusion any dose can be given up to 800 mg every 4 weeks. Doses exceeding 800 mg per infusion are not recommended.
A temporal artery biopsy is never 100% reliable when the test is negative. It all depends on the area of the artery that is biopsied. It is more like a "hit or miss" type of test.
PMR and GCA are frequently diagnosed based on symptoms only. A rapid response to prednisone doesn't provide 100% confirmation.
Inflammation markers aren't that reliable either. Even when ESR and CRP are higher than normal it doesn't identify what is causing the inflammation in order to come to any firm conclusions. Once again, symptoms are used to make the diagnosis.
Yes you are right, it’s 162 mg. How are infusions working out for you?
I'm very happy with the Actemra infusion.
I "progressed" to a monthly infusion. I started with an Actemra injection every 2 weeks. I was able to taper off prednisone but it took me an entire year the first time to get to zero prednisone. I was only off prednisone for about a week before something else happened. I had to go back on 60 mg of prednisone again.
It was only a temporary setback but Actemra was stopped for 3 months while a different biologic was tried. Ultimately, I was switched back to Actemra except I did weekly injections instead of every two weeks. I tapered off prednisone in two months the second time.
I have taken Actemra a total of 4 years except for a period of time when Actemra wasn't available during Covid. Actemra supplies were being diverted to treat seriously ill Covid patients so that was good. However, I had a relapse and needed prednisone again.
When supplies of Actemra improved, I was given an infusion of Actemra. I had a great response to the Actemra infusion. I was off prednisone for the third time before I was given my second infusion of Actemra.
A decision was made to let me stay on a monthly infusion. My rheumatologist has more control over what dose of Actemra I get. All I do is show up for the infusion every four weeks although sometimes I go five weeks between infusions.
The infusion works extremely well for me. Someday I hope to be able to stop Actemra but my rheumatologist doesn't think it would be a good idea.
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