Can’t catch a break.

[GivenUp24]

Well I ended up on 40 mg of prednisone with suspected GCA…😩 I was talking to a friend of mine, who said he was on 40 mg of prednisone and he was only on it for three weeks his side effects from prednisone were so severe. But apparently his GCA went into remission in just three weeks. He said he had the typical headache, and sore temples, and elevated marker so they knew it was GCA. Here’s hoping…

[winfong]

Not to disparage your friend, but you might want to talk to their doctor.

[DorsetLady PMRGCAuk volunteer]

Not sure he had the GCA we talk about on here then...

[SnazzyD]

I find that hard to believe but stranger things have happened. Unless someone has a positive biopsy or scan it is only an educated guess. High markers helps with diagnosis but any inflammation can cause an increase. Other things can cause GCA-like symptoms too which is half the problem. Due to the potential loss of sight, they have to treat with steroids. If this is relatively recent and it was GCA it may well re-emerge. I’m pretty sure I had it surface but go away a few times in the years up to diagnosis with the big one. It may not be the end of their story.

Side effects can be alarming if you are not told what to expect which is most of the time. Anyone, expecting to pop the pills and carry on as normal is in for a rude awakening, but it isn’t forever. It can make one very emotional so seeing things calmly and objectively is harder. It is common on here to have people being unprepared and alarmed thinking that there is something dreadfully wrong when actually it isn’t. What some find unacceptable such they would rather risk blindness, others would find a necessary struggle for now or not a big deal.

The bottom line is, you can’t compare your journey with someone else, just like with cancer. Take each day as it comes. It is good that you are on a better dose for GCA. We can advise and/or commiserate if you get side effects; you’re not alone with it.

[PMRpro Ambassador]

Dear me, what aload of baloney. That wasn't GCA as we understand it or he was exceptionally lucky and the autoimmune process aborted at an early stage. It does happen it is thought.

But having a headache in a particular place and raised markers really isn't a conclusive diagnosis!!! Only a temporal artery biopsy or ultrasound can provide that - when they are positive there is no question. When they are negative - that doesn't mean it isn't GCA.

[GivenUp24 in reply to PMRpro]

I wish the temporal biopsy was 100% sure , but the percentage of false negative is too high for me and they don’t do the ultrasounds in the United States that I know of, at least my rheumatologist doesn’t know…

[PMRpro Ambassador in reply to GivenUp24]

I'm pretty sure they do. Though there wasn't a centre in the USA in the TABUL study comparing the biopsy results with ultrasound.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Sure other have said they have had one…

[Optim11 in reply to GivenUp24]

I had an ultrasound (am in US) for GCA prior to having my temporal artery biopsy. Ultrasound was negative, but biopsy was positive. To reduce false negatives they take a good long section of artery. Still not guaranteed to find it if it's there, but my care team said the combo of visual symptoms and jaw claudication are highly predictive of positive biopsy results.

[GivenUp24 in reply to Optim11]

that’s why this disease is so frustrating there’s no 100% positive way at times!!

[DorsetLady PMRGCAuk volunteer in reply to Optim11]

Not necessarily - the temporal artery is not the one that affects sight - it’s just the easiest one to perform a biopsy on… as it very shallow under the skin. The ophthalmic one is the one that causes the issues, and that’s too deep within the head.

Not sure it’s possible to take a long section of artery… plus not all arteries are affected, and even in those that are, the giant cells are randomly spaced.

[Optim11 in reply to DorsetLady]

I remember asking how they boost the odds of including giant cells in the specimen, if indeed they are present. Surgeon showed me my biopsy 😝 & said studies have identified 1.5-2.0 cm as optimal length.On the jaw/eye symptoms...there are several pubs that cite a predictive correlation with a positive biopsy result. Unless I am misunderstanding. See Mayo Proceedings here for example.

mayoclinicproceedings.org/a...

[DorsetLady PMRGCAuk volunteer in reply to Optim11]

I read that link the other day , and I’m not saying that the the jaw/eye symptoms aren’t connected to a positive GCA diagnosis … was saying that although the arteries are sub branches of the carotid, they aren’t all affected uniformly…so there may not be any GCA in the temporal artery, nor in the specific sample taken. Plus it’s the ophthalmic artery which you can see from diagram is deeper than others is the one that affects eye sight - I know from experience, unfortunately.

Although the TAB is still quoted as the gold standard approach to diagnosis, it isn’t always 100% correct - and we know that from comments on here.

head arteries

[PMRpro Ambassador in reply to DorsetLady]

Mainly due to the fact that gold standard doesn't mean perfection, or even near it, it means "the best we have" which isn't saying much really.

[Chiqui1950]

Yes--- here is hoping--- that it can be true for you too---so sorry to hear about your suspected GCA---what are your current ESR and Sed Rate lab tests?

Humbly I have to admit that for my body it was not so simple---I am still gently and carefully tapering and take it one day at a time--- however we are all different---what has worked for me is to watch for symptoms and to do my lab tests. I never taper without looking at my test results.

I have also found that the wisdom and experience provided in this forum to be profoundly helpful--- I read carefully the comments here when I have needed support with symptoms and possible tapering.

How long have you been on 40 mg prednisone?