A huge THANK YOU to all of you that answered my question concerning symptoms experienced (or not) before losing eye sight. They were scary as well as informative.
I have another question for those who have had the biopsy to detect GCA. We’re you on pred when you had your biopsy, and if so, what was your results? My Rheumy has said it’s unlikely the biopsy will indicate GCA due to the pred. Would it be best to go to optometrist? Thanks again!!
I was on high doses of pred when I had my biopsy. I was very reluctant to have it due to its known limitations, especially as there was a delay of a few weeks from diagnosis before the procedure could be performed, even though there had been really marked GCA symptoms initially. The reason my rheumatologist wanted the biopsy was that if it came back positive, then we had a definite diagnosis for starters, but also I would have then been eligible for tocilizumab should it be needed (situation in Australia, this may be different where you are). So I agreed to the procedure, but only on the side where the symptoms were the worst, not both sides as initially requested.
The biopsy came back negative, so I was diagnosed as "biopsy-negative GCA" based on symptoms and response to pred. The rheumie said that the likelihood of a positive result drops off over time as the pred does its job and the inflammation reduces, but if the piece of artery sampled has had giant cells, apparently a skilled diagnostician can still see remnants of the inflammation for a month or so. But only if the piece of artery removed actually had the inflammation in the first place. And only if the diagnostician is experienced at recognising it.
It took me a while to recover from the surgery (mine was under a general anaesthetic) and the site is still uncomfortable and occasionally painful a few months later. With the wisdom of hindsight, I wish I hadn't had it done.
From what I read in your previous post, you currently only have vague, mild symptoms? Obviously I can't give you advice on what to do, but if it was me in the same situation, I wouldn't be looking at a biopsy based purely on those symptoms without a good deal of convincing from someone whose medical opinion I trusted. It's an invasive bit of surgery, removing part of an artery. And like all surgery, it's not without its risks, so is not to be undertaken lightly.
I would definitely recommend that you discuss your concerns about GCA with both your GP and rheumie and be guided by their expertise.
There are a couple of reasons why biopsy may not show anything, as Rheumy said, the Pred may have reduced the cells, or there may not be any in the sample taken, they don’t appear uniformly throughout the artery, nor in every artery. So you may get a false negative. But if the sample does show affected cells, then you do have a positive diagnosis.
Optometrist can only see if the optic disc is pale if the optic nerve (fed by the ophthalmic artery) has been damaged.
This link may give you more info - academic.oup.com/rheumatolo...
PS -although I was initially booked in for TAB (biopsy) by junior ophthalmologist who diagnosed me in A&E/ER (over weekend) once his senior colleague had seen me on the Monday he decided it wasn’t necessary- the GCA was obvious to all.
GCA.
On pred 60mg on a Friday, saw Rheumy Monday - 4 days on 60mg - he said - symptoms rule. and often it came back negative. Both my GP and Rheumy were on the ball and in the case of the Rheumy way ahead.
Why do you think an optometrist would be of any help? At most they might see an enlarged pale optic disc IF there has been longer term reduction in the blood supply to the optic nerve in the back of the brain. Even that isn't always the case. GCA can have an effect similar to angina - longer lasting pain in response to reduced blood flow - or to a heart attack - sudden severe limitation of the blood flow.
If rheumy thinks you have GCA based on symptoms then you will be treated. But if a TAB is done and is negative, that is the chance in the future lost should it appear more likely it is GCA then,
hi! I was on 40 mg prednisone 2 weeks prior to biopsy-biopsy came out negative. Still being treated as though I have GCA ( although I will probably always wonder😊 )Two years into this journey, and can happily say, I am finally feeling better. Currently down to 6 mg prednisone, Actemra started in February 2022( think this was what made the difference) , and stopped methotrexate in April of 2022, think that helped also. But blood work still shows low ALP and high NRBC, do not know if due to meds or something else. Optometrist says my eyes look “good”, but I do get dry eye and bleary vision at times.
Jaw Claudication Question
Another Prednisone Question…sorry
