I may have GCA, 2 years after PMR diagnosis…?

[BadDancer]

Hi,

Feeling down and rather alarmed after recent events….On Friday my rheumatologist put me on 40mg of Pred (up from 4.5) as he thinks I may possibly have GCA. I have been very lucky in my health professionals so far!

Background: I’ve been pretty fatigued the last 2-3 months which I put down to tapering, a hectic house full Christmas , the death of a much loved first cousin, and a short holiday with travel problems. In December I also had a (happily) negative skin biopsy - I’ve previously had skin cancer- and a minor rash similar to the vasculitis rash I had extensively a while ago.

During January I noticed my vision was a bit blurred, my scalp was tender especially on the right hand side above my ear ( not my temple) and I was getting intermittent right hand side jaw pains after chewing for a bit that disappeared when I stopped eating. No headaches.

I visited my dentist and my teeth/ gums etc are all fine. A recent blood test ( done for another reason) showed a very slightly high monocyte level, slightly low TSH, but otherwise all OKish.

Early in February I went to my opticians who found my sight in my left eye had deteriorated significantly in the last year and I now have a ‘moderate cataract’ in that eye. When I mentioned my other symptoms he advised an urgent referral to my GP or specialist to exclude GCA, and then cataract surgery.

My excellent rheumatologist saw me within 24 hours of reading his letter, has taken blood tests for ESR/ CRP ( which have so far been normal, even on his PMR diagnosis), and has put me on 40 mg daily. I am due for an ultrasound scan of my temples on Thursday and am seeing him with results on Friday 14th. He mentioned a possible biopsy but said we should do this first.

Apologies for the long report. I would be interested in any thoughts ( does it sound like GCA even with no headaches or temple pain) and what questions would be useful to ask, particularly if the blood tests and /or scan are normal - I will have been on the increased steroids for 7 days when it’s done ( could that affect results?). After this shock I’m trying to educate myself on GCA and side effects of high steroid dose , including Kate’s excellent book, but any other info welcomed, so I am well informed and prepared for Friday’s appointment.

So grateful for this site which I read regularly and has been a source of comfort, knowledge and support. Thank you.

[DorsetLady PMRGCAuk volunteer]

There’s a lot of symptoms in there to point towards is being GCA…. not everybody has all the symptoms listed in the guidelines etc. and your Rheumy has taken the correct action until proven-or not!

Even if ultrasound and blood markers come back as normal [which I doubt] then having had GCA myself.. would say that’s what you have.

Maybe have a look at this -most of it you will already know, but it’s a reminder if nothing else -

healthunlocked.com/pmrgcauk...

And this specific to GCA -

healthunlocked.com/pmrgcauk....

It might be a new experience for you, but there are plenty of patients on here with a raft of knowledge of GCA so just ask when/if you have anything you aren’t sure about… and please let us know the situation after your next appointment.

[BadDancer in reply to DorsetLady]

Thanks so much DL for your swift and helpful reply, much appreciated - I will read the links and update after next Friday…

[PMRpro Ambassador]

Not much to add to DL's reply - but what you describe really does fit with needing to be taken seriously in case it IS GCA. Better to think it might be and act accordingly than to dismiss it because "You don't have ..." Headache isn't seen in all patients and is amongst the presenting symptoms in less than a third of patients. Jaw claudication, the pain on eating, is also a red flag symptom.

Let us know what transpires - whatever, they have taken the right precautions.

[BadDancer in reply to PMRpro]

Thank you so much PMRpro, really appreciated and interesting about the headaches.

Forgot to mention, for completeness, my tinnitus seems more noticeable and having lost my appetite I’ve lost over half a stone in a month - which I’m pleased about as I needed to!

Yes, as you say, my Rheumatologist seemed most concerned about the ongoing jaw claudication.

Thanks again for your swift and helpful reply. I feel so fortunate in having a good care, having read a few horror stories. This Forum is invaluable. 👏🏼

[PMRpro Ambassador in reply to BadDancer]

Ears can also suffer in GCA

healthunlocked.com/pmrgcauk....

and weight loss is also a symptom so do mention both to the rheumy. The evidence is mounting!!

[BadDancer in reply to PMRpro]

Oh dear. Thank you. I will!

[ubaoz]

I was diagnosed with GCA after 2 years of PMR. In my case it was a horrendous headache as the main symptom, but I also had scalp tenderness and some jaw claudication. And incredible tinnitus! I had very little in the way of optical disturbances, although my eyes definitely weren't "quite right". Plus, in my case, my inflammatory markers had gone sky high, but as you've found, not everyone has those raised.

One thing that helped me a lot at the time (and continues to help BTW!) was information from this forum, which meant I was much better informed. As a result, I was better placed to advocate for myself at the ED department in particular. Who actually tried to send me away because I'd managed to walk in the door by myself! In fairness, it was in the middle of Covid, the hospital was bedlocked and they didn't have a rheumatologist. But still…

However, despite all the uncertainty at the time, in my case it was actually a relief to be diagnosed with GCA, to explain what had been going on and was what I thought I had. And as the first IV pred gave me massive relief from the symptoms within a few hours, that in itself was highly diagnostic as well. I still clearly remember just how wonderful it was to not feel like someone was trying to shove a bolt through my head from one temple to the other!

So I can sympathise a great deal with your current situation – knowing something isn't right, hoping it isn't GCA despite the evidence, but also wanting an explanation as to what is causing your symptoms and wanting relief from them. The uncertainty is the worst part in some ways.

The other side to this of course is knowing that if it is GCA, then the advice and empathy from this forum can be invaluable for helping you to deal with it all.

Good luck! I hope you get some answers and relief very soon.

[BadDancer in reply to ubaoz]

Thanks so much Ubaoz for your helpful and full reply. You had it far worse than what I’m going through, as the headaches sound so awful but, as you say, wonderful to finally get a diagnosis and some relief. I agree the uncertainty is one of the worst things. I’m on day 4 of the high dose and my head and jaw symptoms have almost totally disappeared which is great. If not for the insomnia, I’d been feeling better than I’ve felt in a very long time! We’ll see what the blood tests and Power Doppler ultrasound reveal….

Thanks again for taking the time to share your experiences. This Forum is certainly invaluable!

[ubaoz in reply to BadDancer]

That's wonderful that your head and jaw symptoms have all but disappeared! Must be such a relief. I agree that the side effects of the high dose pred can be somewhat "challenging". I know I felt like I was on Planet Zorg for quite a while and was really hyper, physically shook all the time and, like you, sleep was somewhat "elusive". All those will improve when your dose starts coming down once the initial inflammation is controlled and you can start tapering. So hang in there. And good luck with all the tests and scan. Hope they add useful information to the overall picture and you continue to feel well.

[BadDancer in reply to ubaoz]

Thank you 🙏🏻😀🤞🏻