GCA confirmed after Ear pain

[kalgoorlie]

Just to let you know that the result of my temporal artery biopsy has been confirmed as positive today. I had the biopsy on monday, just 3.5 weeks after initially going to the GP with earache. I am amazed actually as it was a result of knowledge on this forum that prompted me to go back to my GP, after one week on antibiotics appeared to cure my inflamed eardrum but not the persistent pain around the front of and in my ear, and jaw claudication. The pain was radiating only slightly higher up to my temples. This did seem to get worse after the ear infection had cleared...maybe the ear infection was a trigger, or the antibiotic....but who knows....

I asked my GP to discount GCA. They took me seriously and I had blood tests (result was high CRP) and was put on 60mg pred straight away.

I feel so lucky that I was so well informed and would like to re-iterate that earache and pain in front of ear should not be disregarded. I had no eye problems and only slight temple pain further up my head. But it was mostly the ear. Do not discount how well you know your own body. I never suffer with ear infections nor do I suffer with headaches. This felt very unusual for me.

My rheumatologist reduced my dose to 40mg and wants me to take alendronic acid weekly. I discussed the downsides of this as per this forum but he was pretty insistent although obvs up to me. He said he would be happy for me to have infusion instead but I will see how I go. So I will start taking it and will go for a dexa scan, privately if nec. I have a vibration plate so will use that too.

My latest blood test taken just before the biopsy ( just less than 2 weeks on pred) now shows normal CRP. Interestingly, apparently my calcium levels are high. The rheumatologist told me to stop calcium for one week then start taking half the dose. I do eat very nutritiously, in fact have been following Zoe and Tim Spector for over a year ( for what it's worth...🤔...obvs hasn't stopped me getting immune disease...).

But the main thing is to thank this forum! And ear pain should decidedly be out there!

[DorsetLady PMRGCAuk volunteer]

TAB - sorry to hear you have GCA, but good that you now know what it is, and are being treated accordingly.

Would hold on the AA until you know you actually need it.

I know there’s a bad rap about it, and for some it does cause issues, but I took it for 4 years with no issues… but would always say ‘if you need it, take it, if you don’t need, then don’t take it’ . It’s in the guidelines for a reason, but it’s a blanket assumption is required by all - it isn’t.

The ear pain connection is out there - partly funded by the charity - but study results came out just before COVID, so maybe it hasn’t filtered down to all as it should have.

GCA nor PMR are not respectful of many things… much like many other diseases . If it in the genes, it in the genes, and there’s not always a lot you can do about them!

[PMRpro Ambassador]

Result - and you will never have someone trying to make out that it wasn't GCA!!! The TAB is unequivocal when it is positive.

And well done the GP for listening to you.

[Grammy80]

As a fellow GCAer, so sorry to hear you have it but twice as glad that you were listened to and have started treatment before any permanent damage. This forum is amazing in the knowledge and support it gives us.

When I was diagnosed in 2019 I took the AA for a few months and stopped. About six months ago I had a bone scan; it showed no osteoporosis. As DL said, it is an individual matter.

Keep listening to your body and I wish you all the best~! 💞

[Dochaz]

I didn't experience ear-ache, but I did have a persistant dry cough for a couple of months (no fever, no fluey symptoms) which was worse lying down and at night. None of the health care professionals I saw seemed to pick up on it, but when reading up about GCA, I learnt that a number of patients present with an unexplained dry cough.

As you say, you know your own body and you know when something isn't right.

Re AA, I was prescribed Risedronate once a week along with Pred for the first few months with no ill effects. I've no idea whether it was necessary or not and hadn't yet found enough info to make an informed decision so just went along with the doctor's advice.

Good luck with your treatment and I hope your journey is a quick one ☘

[random901]

Horrible to have diagnosis ... but what a relief! Ear pain then positive biopsy is exactly what happened to me. I stopped taking alendronic acid which was routinely prescribed after 3 tablets, upping kefir and yoghurt instead. I wish you all the best!

[Gimme]

I am sorry for your diagnosis, but on the other hand, thank goodness that you persisted and got it checked out, so that it can be treated. That must be a relief to you to get to the bottom of it, even if not good news.

[Birdfriend]

ear pain was one of my first symptoms leading eventually to my GCA diagnosis. Doctors kept saying you must have a migraine whereas I would plead with them to consider my extreme ear pain. Finally , a neuro ophthalmologist reviewed my chart and immediately ordered biopsy. He said the extreme ear pain was indeed a symptom of GCA. Ugh. I can’t tell you how may times I’d say to ER doctors, in addition to searing head pain, my ears hurt so much!