Just found this site after 10 years of having PMR / GCA

[Micheal1956]

hello Im Mike. Im 67 years old and live in Galway Ireland. have Ploymyalgia and Giant Cell Arthritis which are in control with medication with one exception

sometimes I get very strong pain which seems to be located behind my left ear. or it could be left side of my jaw. it is extremely sore and I cant move when I get it. Moving or holding my head in different positions will lessen or increase the pain. I try different head positions to find best one and take some tablets till it lets up. these episodes are beginning to get longer.

Im sending this in an effort to find out if anyone else experiences this and to discuss bettervways of dealing with this.

Im very grateful for any help.

Mike

[SnazzyD]

You might be having temporomandibular joint issues so it’s worth searching for that. This crops up fairly often here. However, someone needs t check that it isn’t jaw muscle claudication, so like a cramp from poor blood flow. Normally it starts with chewing and gets better when you stop, not go on for ages. However, not everyone fits the textbook. Also look up sternokleidomastoid muscle tension that can affect the side of your head, jaw, and the muscle attaches behind the ear. Problems with this can mimic some GCA symptoms.

healthline.com/health/stern...

healthline.com/health/tmj-d...

[Micheal1956 in reply to SnazzyD]

Thank you so much for the reply. Chewing is not bearabke when I get this. My consultant suggested it could be a symptom of my GCA. I take ibrufin or prednisolene to get rid of the pain. I will do a bit more research into your comments, Thank you so much.

[DorsetLady PMRGCAuk volunteer in reply to Micheal1956]

. Chewing is not bearable when I get this

Then please consider it may well be GCA flaring.. and if so, it needs t be treated properly - to stop it, and consultant should be treating as such, not just suggesting it might be a symptom - see this advice -

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

What took you so long to find us?

 SnazzyD has given some advice on TMJ/TMD - but just make sure it's not connected to your GCA, although if painkillers help I doubt it.. but always wise to check.

What dose of Pred are you on at the moment?.. and a bit more info in your bio would be good please-

healthunlocked.com/pmrgcauk...

[Micheal1956 in reply to DorsetLady]

Thanj you for reply. To be hinest I hadnt looked before.

Currently only 5mg of Pred. My main meducation is monthly infusion of Tocilizumap (Reactra) . This has been working very well as no other pain and I have good mobility. Im 5'9 12 stone. Active

[DorsetLady PMRGCAuk volunteer in reply to Micheal1956]

Have replied further down [your reply to SnazzyD] - sounds like a flare - and just because you are on TCZ doesn't stop that happening...so think you need more Pred [temporarily] to get things back on track.

[Micheal1956 in reply to DorsetLady]

Thank you. Ive updated my bio. I take some extra pred when it flares up and sometimes ibrufin.

[DorsetLady PMRGCAuk volunteer in reply to Micheal1956]

You might take extra Pred when it flares up.. and that's okay.. but my point is -and I'm not nagging, - it shouldn't keep flaring up. That indicates it's not being properly controlled, and as you said in intro post "these episodes are beginning to get longer"- that's not the aim of the game.

I had GCA with not a very auspicious start, but it never flared once on Pred [no TCZ nor anything else]. I may have been lucky.

Think your consultant needs to be a bit more pro-active in getting your GCA back under control, if that's what it is [PMR sounds okay] - and/or you may need to look at your activities - what exactly do you mean by "Active"?

[Micheal1956 in reply to DorsetLady]

Thanks again. 2 other thungs that may (or may not be significant.1. Re Active. I go fir walks and play "walking football." . Recently I was given membership to a Gym/pool clunb. So I have been doing more exercise. Nothing too aggressive , brisk walk on treadmill , cycling 10 mins each and a 50m swim. Could this be significant?

2. The pain Im experiencing occassionally is nothing like pain that I had pre diagnosis and treatment. Now occassional pain is confined to one specific area ie behind left ear. Pre diagnosis the pain was all over body except for extremities (feet/ hands). Mainly shoulders, chest , thighs.

I really appreciate all the time you are spending on thid. Please respond when you can but I dont want to burden you. Micheal

[DorsetLady PMRGCAuk volunteer in reply to Micheal1956]

No burden, it's why we are here - to help others as we have been helped.

Exercise is good, but after each activity you do need to give more time for recuperation... so maybe not the same routine every day - vary it a bit, so difference muscles/parts of body are used. .. although it does sound as if your PMR is being troubled, so that's a positive.

But you do need to chase up the jaw/ear issue... hopefully it's not GCA [and not saying it definitely is or isn't], but once that can either be ruled in or out, then you can go on to other causes.

[Micheal1956 in reply to DorsetLady]

im trying to limit Pred with consultant knowledge due to possible sideveffects

[DorsetLady PMRGCAuk volunteer in reply to Micheal1956]

I appreciate that... but if you read my story you'll know why I'm concerned about undertreated GCA..

healthunlocked.com/pmrgcauk...

[Micheal1956 in reply to DorsetLady]

Thank you for sharing your story. You have been through alot. Ican see many similarities and differences with my own stories including the stress at the beginning except in my case it was caused by my sons health problems. I have learned a lot this morning.

Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Micheal1956]

You're welcome- and please do keep us informed of how things go, now we know you, we care...

[Micheal1956 in reply to DorsetLady]

this artucle is very useful. Thanks. I was wonderung if anyone else gets similar pain to mine. Its in the same place everytine. Always on left side behund ear. No wgere else. I might not get ir for months. Then get it 3 weeks in a row. Thankfully the pain episodes dont last long.

[DorsetLady PMRGCAuk volunteer in reply to Micheal1956]

Ears can also be affected by GCA... but think you need to find out exactly what is causing these issues... we can only hazard a guess at the moment.

[Micheal1956 in reply to DorsetLady]

Im on 2.5mg of Pred maybe thats not enough

[DorsetLady PMRGCAuk volunteer in reply to Micheal1956]

Maybe not, worth trying 5mg for a week or so, and then down to 3mg again - but as episodes are intermittent, it's a bit difficult to know as you don't seem to have any other symptoms.

Sometimes we have to put our Poirot hat on to sort out things... 😊

[SnazzyD in reply to Micheal1956]

The trouble is no one person’s ear pain tells you what your is, obviously. I have pointed out common causes that crop up here amongst those with your condition. BUT, as DL says, these are just things to consider in the meantime whilst you are getting GCA checked out. Just because you on a biologic doesn’t mean your GCA is covered because it only covers one sort of inflammatory mediator, Interleukin 6. Pred deals with the rest. If your GCA is driven by other mediators and the Pred dose has got too low for your autoimmune activity it’ll flare. Giving the pain a hit with Pred will only help temporarily until the inflammation build up again. If the pain is 100% cured by Ibuprofen it may not be GCA, but we can’t say for sure.

In the meantime, get a dentist to check your TMJ. Have you tried shoulder massage or a good physio or osteopath? Pred and PMR can make the muscles less tolerant of repetitive actions, especially new ones so the exercise might be relevant. If this keeps happening and you are having to increase the Pred each time, you may end up with a larger dose over time than if it was increased, sustained and then reduced slowly.

[Micheal1956 in reply to SnazzyD]

Thank you the good advice. I just checked again and Im actually only on 2.5mg of Pred.

[SheffieldJane]

Another possibility could be an oesophageal spasm. I get the occasional one but they used to happen quite often. I suspect it was damage done to the oesophagus by long term Steroid use compounded by Actemra. Mine involves feeling like I have swallowed a pebble then a pain extends around my jaw-line and behind my ear. It is pretty alarming. It is helped by keeping calm, taking sips of cool water and then over the counter indigestion medication. Nothing significant was found during a camera endoscopy, although there was a little blood around the oesophagus which the doctor dismissed. I think it is triggered by gastric acid. Mention it to your doctor, it should be investigated. Welcome! I am glad you found us.

[Micheal1956 in reply to SheffieldJane]

thank you so much for that

[PMRpro Ambassador]

Hi and welcome - better late than never!!!

It doesn't SOUND very GCA-ish with it being so localised but it is something and needs to be identified if it is getting more frequent.

In the context of GCA, Ro-actemra/tocilizumab (TCZ) works to get half of patients entirely off pred but GCA can have at least 3 different mechanisms underlying the inflammation, only one of which is tackled by the TCZ. This means that if YOUR GCA involves the other two, they can continue as before and require pred to control their inflammation. It was not uncommon for patients in the clinical trials to be stuck in the 8-10mg/day range and it is possible that 5mg isn't quite enough for you at times.

But it sounds possibly nerve entrapment to me so maybe a neurology appointment would be worth it?

[Micheal1956 in reply to PMRpro]

Thanj you so much.

[Micheal1956 in reply to PMRpro]

Thanks. I checked and Im on 2.5mg of Pred

[Shiv14]

Hi Michael. If at any stage you want to look at another opinion I recently discovered a Rheumatologist in Ireland who has a special interest in GCA and PMR. Richard Conway, who works public at St James and private at Blackrock Clinic. Rheumatologist that would choose GCA/PMR if in the Mastermind chair are few and far between in any country so it’s a name worth having in the back pocket.

[Micheal1956 in reply to Shiv14]

Hi ShivThank you for that.

[Cobnut]

Hi MichaelLike you I have GCA and have experienced severe pain and stiffness behind my right ear. I order to explain this I had an all round x-ray of my head done by my dentist and a head scan at the hospital. Both proved the pain was due to temporalmandipular disorder. I was advised to rub volporol into the area or take a pain killer and eat soft food until it goes away. Mine still happens occasionally but dental work taking a while sometimes brings it on. I have been recommended to take a pain killer before I go. I have osteoarthritis all over my body plus osteoporosis and cervical spondylitis so movement is not so easy but I am now 82 and nearly nine years with GCA so am doing quite well really. Take care, keep taking the pills and walking every day if possible. I an now on 6mg pred and have been told to stay there as it it helps arthritic pain. Good luck

[Micheal1956 in reply to Cobnut]

Thank you so much for that.

[watercolours in reply to Micheal1956]

Hi Michael, glad you've found this site, everyone is so good in doing as much as possible to help out. I'm from Limerick, so not to far from you, I go to Dr. Kavanagh in the Galway Clinic. He a very nice man, easy to talk to and very good to investigate issues and try as many things as possible. Only problem is he does have a hefty waiting list. I'm wondering, as PMRPro has said, would the pain be more nerve related, maybe you should ask your doc to send you for an MRI or CT scan to see if anything shows up. Hopefully you can get to the bottom of it!

[Micheal1956]

Hello , Thank you for the reply. Hope the storm didn't affect you too much. It was very bad here. I attend Dr John Carey and find him very good.