Went to rheumatologist on Friday, dragged myself in with so much pain and lethargy. I was reduced from 20 mg to 0 in six days after being on prednisone for eight weeks. I also mentioned I had blurred vision and went to eye doc and they said I have cataracts and dry eyes. But also had some jaw pain and headaches, although I do suffer from TMJ. As well as shoulder pain, which I never had before.
After reviewing MRI of hips, the doc said I have tendinitis/inflammation in hips (that the other Radiologist did not pick up), and now thinks I do have PMR, and because I wasn’t getting relief on 20 mg, that it may now be GCA, because of other symptoms. So he put me on 60 mg of prednisone and ordered a biopsy and scan on my chest (I told him I felt my chest being very tight, could be anxiety from all this, who knows). He’s definitely being proactive. Pain pretty much gone after two days. Still some jaw and head aches, here and there, and now some tingling that quickly goes over my skin on my scalp, doesn’t hurt though??
Next step is biopsy, which I’ve read can sometimes be negative. We do not have anyone in area that does the ultrasound (although, I’m going to do some research). Do you think it’s worth the risks to have biopsy done? Im thinking he will still probably keep me on the high dose of prednisone.
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It certainly sounds very much like GCA, and good that he is treating as such…and you are correct, a biopsy isn’t always positive even though you do have the disease. There isn’t much risk with a TAB, but there is discomfort, fortunately [or unfortunately] I was booked for one as it’s normal procedure, but it was decided it wasn’t required as it was very obvious I had GCA.
Do your research on ultrasound, and keep on open mind in TAB, and see how you progress with the Pred… and presumably you can always discuss again with Rheumy before the actual procedure.
Sounds more like GCA than anything else - and it depends how long you are at 60mg before they can do the biopsy. Fewer than half of biopsies are positive, especially after taking high dose pred for more than a week, although there are always exceptions.
The question to ask is what he will do if it comes back negative. A negative biopsy is not proof positive it isn't GCA - while a positive biopsy is incontravertibly proof it IS GCA! There are several reasons for a biopsy being negative including the fact the temporal artery may not be affected at all, it is used because it is superficial and redundant so easy to get at and you can manage without it. Technique is an important factor and quality of the piece of tissue. And GCA forms what are called skip lesions - there are bits with giant cells alternating with bits without giant cells, if they get the wrong bit to look at, they won't find what they need. If he is going to treat you as if it IS GCA whatever the result - why bother with the biopsy which, as you so rightly say, is not entirely risk-free.
Thank you for explaining this. I am suppose to go in for biopsy sometime this week. When I speak with the office this morning I will ask him if it comes back negative what he will do. Still waiting for my blood work to get back. I should have some elevation in ESR and CRP, correct, because with GCA they are usually higher? They went down with the original 20 mg even though I had some symptoms.
I can only say that I'm really glad not to have had the biopsy. Apart from anything else, once that artery has been biopsied, it can't be done again. Mine was diagnosed by PET/CT scan. Recently a rheumy was wondering whether to do another scan but concluded that whatever the result, they would continue to treat me the same anyway. So I dodged another bullet there; it sounds like you could be in the same position.
Hmm. Was the PET/CT of the temporal arteries. Do they need to do that one immediately after being on Prednisone. I’ve been on 60mg since Friday. I’m wondering if I should not have the biopsy? It’s not without risks and may be negative.
PET-CT is usually whole body - looking for PMR and LVV as well as cranial GCA although it is less useful for the latter since the brain takes up vast amounts of glucose anyway and swamps other signals.
As Pro says, it is the whole body. Yes, pred will working to mask it, but the sooner you have the scan, the more likely it is to pick up a problem. I had been on 15-25mg for a year and 60mg for 3 weeks when I had mine, and it still found inflammation. Though apparently, if it had been much longer, they wouldn't have done it.
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