GCA and Ear Swelling, Pressure

[Pamk1949]

Can GCA cause ear swelling ? I have GCA and constant ear pressure, soreness. My general practitioner couldn’t find any thing that would cause it, nor could an ear-nose-throat doctor. Even did a hearing test and all said everything is good. Would this be a flare? I’m on Actemra and 4 mg prednisone.

[SnazzyD]

Which bit of the ear is swollen?

[Pamk1949 in reply to SnazzyD]

Both ears on the inside

[SnazzyD in reply to Pamk1949]

Do you mean your canal is seen to be narrower due to swelling? Or do you mean someone has said there is swelling on the other side of the eardrum?

[Pamk1949 in reply to SnazzyD]

I went up to 10 last week for 5 days, thinking it was a flare. It seemed better so after 4 days I dropped to 4, but now it’s back. I’m thinking maybe go back to 10 if it’s a fare?

[PMRpro Ambassador]

It is possible - Actemra only gets about half of patients entirely off pred. There are at least 3 different mechanisms that can create the inflammation in GCA, Actemra only works for one, the IL-6 - biologics are extremely specific, If your GCA involved any of the others, you will continue to need pred to control them.

When you say "on the inside" what do you mean? The ear canal?

[Pamk1949]

yes deep inside —I feel silly, having had GCA since 2017, and maybe not knowing this . They say GCA can present with ear pain—but should I treat it as a flare? My blood tests were normal and I’ve been to too many doctors lately—

[Pamk1949 in reply to Pamk1949]

I’m not expecting anything from Actemra at this point It doesn’t seem to work, or maybe I’m not doing this right

[PMRpro Ambassador in reply to Pamk1949]

What has it done? What do you expect? It should allow you to get to a much lower dose of pred but, as I said, it only gets half of patients off pred altogether, the other half need a much lower dose of pred.

But it doesn't work instantly, some of us need a few months before we can reduce the pred easily. I have reduced from just under 20 to 5mg in 16 months, I think that is a pretty good result given the previous 13 years on pred. Maybe it is more difficult to appreciate what it may have done if you go on it soon after diagnosis.

[Pamk1949 in reply to PMRpro]

Yes, I realize I should have had Actemra right at the start.

[PMRpro Ambassador in reply to Pamk1949]

It wasn't available then as it wasn't approved until 2018 and even then only for relapsing or refractory GCA, i.e. after repeated flares.

[DorsetLady PMRGCAuk volunteer in reply to Pamk1949]

GCA can affect ears, but I don’t think it’s usual to have swelling as you describe…

[Pamk1949 in reply to DorsetLady]

doctors don’t know either. Maybe I’ll go back up to 10 mg. Inside of ears feel hot - cool compresses seem to help. It just feels like a stuffy cold,without the conjestion

[DorsetLady PMRGCAuk volunteer in reply to Pamk1949]

Always worth trying an increase -and seeing if it helps….hope so. 🌸

[Pamk1949 in reply to DorsetLady]

Thank you DorsetLady for your reply. I’ll do that starting now, as I did get a little relief last week. 😉

[SheffieldJane]

Are you sure that it isn’t a bad ear infection? I used to get infections that caused the swelling you describe, at one point my ear was completely closed. The ENT consultant put antibiotics directly into the ear and thereafter did regular ear syringes, which kept it healthy. When he retired his successor didn’t see the point in the regular syringes and the swelling and infections returned. When my PMR was diagnosed the psoriasis in my ears cleared up with the Pred and never returned.

[Pamk1949]

Thanks ShedfieldJane, yes I was hoping for an antibiotic for the ears to clear up a possible infection, but doctor said ear canals were swollen but no infection. I was worried it might be a flare. My lab markers are normal, so maybe it’s something else, like yours.

[SheffieldJane in reply to Pamk1949]

Good luck with finding out what it is. My consultant was an old fashioned angel.

[ncfaaeos]

One of the symptoms I had before being diagnosed with GCA was a sore feeling on my face just in front of my ear. I was also advised to see an ear, nose and throat specialist, which I did, but he found nothing wrong.

[Pamk1949 in reply to ncfaaeos]

Thanks for your reply -same here—doctors don’t find anything wrong

[Paradisso]

Good morning all, i am sorry i have no helpful respinse but your post peaked my interest. I was diagnosed with GCA october 21 and been on tapering schedlue down from initial60mg pred to being on just 1mg currently. For a couple of years prior to oct 21 , i periodically got a pulsating type pressure in my right ear, i joked that it felt like a heart beat deep in my right ear, no pain just a strange pressure sensation. EnT found nothing. Fast forward it seemed to stop when GCA manifested on the same right side only.However i have noted it has returned within last couple of months not as strong or as frequent but just an occasional bout if i climb the stairs or hold my head in a specific position. Mentioned it to Rheumy and they have suggested maybe a scan, the matter is in debate.

[PMRpro Ambassador in reply to Paradisso]

At least they haven't just dismissed it!

[SheffieldJane in reply to Paradisso]

I had Pulsatile Tinnitus for a while on the higher doses of Pred. it sounds similar.

[Broseley]

Hi, I have been getting sore ears since and before diagnosis with GCA. They get itchy inside the ear canal and the soreness wakes me up at night on the side I sleep on. It is relieved by turning over. I put steroid cream in my ears about once a month, and this really helps, till it builds up again. GP and ENT specialist couldn't see anything and rheumy doesn't even comment.

[PMRpro Ambassador in reply to Broseley]

Blowed if I can see why the GP doesn't offer steroid spray/drops if steroid cream helps. Getting cream into ears is fraught with problems.

[Broseley in reply to PMRpro]

He's useless. I usually tell him what I would like and what I think is wrong and he agrees! When I told him about putting the cream in he said good, carry on.

[PMRpro Ambassador in reply to Broseley]

Useless is a bit kind ...

[Pamk1949 in reply to Broseley]

Thanks for your reply. Yes I have itchiness too. The doctors said that was a symptom of inflammation

[Whatawonderfullife]

I think they just don’t know. When I’ve had pain in my ear, at the beginning and during a flare and mentioned it, it’s just dismissed.

[Pamk1949 in reply to Whatawonderfullife]

Same here —just dismissed!

[Pamk1949 in reply to Pamk1949]

thanks, didn’t see that side effect listed before

[Maxslady]

One of the listed side effects of Actemra is ear congestion.

[Chopin002]

I have always had sore ear , left only. Personally I believe nerve damage from GCA. Specialists see nothing. Face around ear slightly numb as well. Feels better the lower pred dose but don’t expect to ever be gone completely.

[Gardening2811]

I also have a problem with ear pressure!

GP tried various nasal sprays but the best thing was Otovent. It’s just a little gadget with a balloon that helps open the Eustachian tube .Yawning also helps. Also taking a deep breath, holding your nose and puffing out your cheeks. You can feel your ears pop! I think it might be a side effect of Actemra as it can affect sinuses but that’s just a guess.

My problem started around Easter time and is just beginning to improve with using the Otovent

[Gangley]

Hi Pam. I have GCA and the first symptoms I had were sore hair and I was unable to wear my custom made ear plugs in the right ear. I planned on getting another one made but with other things happening I never got around to it. Of course at the time I didn't know about GCA and a severe headache led to the diagnoses. After I was diagnosed the Dr. started me on 60 mg prednisone and about 2 weeks later I was able to wear my right ear plug again. Good luck.

[allofaquandry]

Hi Pam,

following on from Gangley's comment, a few years ago I found I also struggled to fit my hearing aids in my ears. Not long after I had a GCA relapse, was returned to 40mgs prednisolone and low and behold not long after became aware I could wear my hearing aids again with no problem. Best wishes and good luck