GCA and deafness

Hi guys. How's things? Can you help? I keep getting a stiff throbbing jaw (left side) when I eat. It just feels numbish the rest of the time. No headache but increased tinnitus (which is loud enough already thank you) and hearing reduction. I have pmr and am on my second week of 14mgs. Doing quite well really but should I be concerned about hearing loss. I have always had bionic hearing and like a lot of people blame getting older for the reduction in ability to hear but there is a lot of tenderness around the jaw joint and ear across to the eye. My ear gets sore inside occasionally . Nothing spectacular but not especially comfortable either. No problems with the eyes. Ta very much for listening, all the best cc 😎 ps months before I was diagnosed with pmr I had bad heads with very tender scalp at back but it all went away and pmr symptoms kicked in well and truly with no head problems since January. Bye for now.

11 Replies

  • The symptoms you describe are all suggestive of GCA - especially since you mention the fleeting scalp pain. I too had scalp pain which went away after a few weeks and also jaw pain which went once I was on pred. I had also had tinnitus for the entire 5 years I had had PMR before being put on pred. I have never been on a dose above 20mg (Medrol and it didn't work too well, with other pred 15mg was fine) even when I went to the rheumatologist about double vision and it all cleared up with no problem. He was of the opinion that, without visual symptoms, 15mg should be enough.

    I would mention this to your doctor as soon as possible and also not reduce any further for the moment, maybe even discuss going abck to 15 or even 20mg to see if it helps. If you get any headache or even the slightest visual symptoms go straight to your doctor or, if he isn't available, go to A&E. And like Monopoly - do not pass go! Straight to A&E. Just in case. Better once too many times than one not enough.

    And do keep in touch - we want to know how you get on.

  • Thanks will do. All the best cc

  • Hi pmrpro

    You asked me to keep in touch re possible GCA symptoms. Last Monday I phoned my doc he told me to come straight down to see him. He listened took a blood test whacked my dose up to 60mgs and said he would fax the hospital re a biopsy. Had to go back two days later for update. As the blood test didn't have raised ESR (think he said it was about 9) he told me to go down to 40mgs until my hospital apptment. When I went back on the Wednesday he hadn't heard from the hospital so he phoned the consultant there and then who said that the hospital (Nuffield orthopaedic Oxford) don't favour biopsies anymore but have a dedicated PMR/GCA clinic on a Tuesday and I would be given an immediate apptment to attend the next one (tomorrow). Because I had hearing loss he did say it might be an ear/jaw problem instead of GCA but on looking that up I don't feel it is. The 60mgs started to improve my tinnitus and a layer of hearing came back. Some of the tenderness and numbness has improved but I don't feel so protected on the 40mgs. He did say continue to look out for eye symptoms and contact him immediately if anything changes. New tenderness appeared last night so I took an extra 5mgs as I have lots of floaters etc. will be glad to get to the apptment and have a definite answer. My only concern is the fixation on the ESR result. I expected it to come back normal as I was on the steroids anyway albeit 15mgs. I understand there can be false negatives with this test so I gape the team I see will take that into account and not assume it's a separate jaw problem. Will take extra this morning again to feel safer. Thank you for your help and concern hope you are well, cc 😎🌻😎 the above word "gape" should read hope! xxx

  • One in 5 GCA patients have a normal ESR/CRP. But I imagine it is your GP who has the fixation.

    I do wish they'd get over the eye symptoms too - ears are very close and can be involved in GCA!

    And gosh - a fast track clinic in Oxford, I must remember that! Now looking forward to the next instalment! Good luck in the morning.

  • Hi

    My first blood test back in March had an ESR of 53 and CRP of 70 which rapidly went down to 20 after six doses of 15mgs so I think he was thinking that these are new symptoms so it should all go up again. To me they were just a continuation of all the weird and wonderful other symptoms that could not be explained away by PMR alone. I reminded him of the headaches in December and January but he felt it was too far away to be relevant. I hope I get a bright spark tomorrow. Will keep you updated. Stay well. cc 😎 i have to say that my doc has been pretty good considering what others have been through and the peculiarities of this condition, how can they know everything. What makes anybody become a GP, seems a thankless and exhausting task if you ask me! ☀️🌻☀️

  • Well yes - but they are the gatekeepers and are meant to know when they are out of their depth. Trouble is, too many don't.

    The ESR can lag behind when something new appears - and once you were on a decent dose of pred it could be kept down. Some people have a raised ESR at first but then it never rises again - no-one knows why.

  • Hi PMRpro

    Carrollee here. I attended the GCA clinic and saw a very pleasant rheumatology specialist. Being a teaching hospital (JR Oxford) she had a med student with her. There didn't seem to be any rush to get me out of her office as there is at my health clinic which was pleasant change. She listened to everything then used a stethoscope to listen to neck temple and under arm, I assume she was listening for blockages etc. as it all sounded fine and my ESR was normal she favoured a biopsy as it was the only thing left to try and get a definitive result. There was no suggestion that I didn't have it but I guess when giving such damaging levels of a drug (40mg) to a patient they like to be sure that it's for very good reasons.

    She put my mind at rest regarding the biopsy as I had heard of complications. They only use vascular surgeons who are used to working on the aorta so this is child's play for them and have never had any complications. The surgeons set aside two slots a week on a Friday. I felt it was the only answer so agreed. Anyway long story short the first one had to be cancelled due to an emergency (aorta more important than temple!) Anyway had a phone call from a very pleasant surgeon last wed eve saying can u come in tomorrow at 7:30. So I did and it's over. He had three of us to deal with that morning so they put in an extra day for it. Was treated wonderfully and everything explained along the way. He was able to take out parts of two arteries. Was looked after and fed and monitored etc so nothing but praise. Will take three was for results which is the only sad thing but as it won't affect how I am being treated I will just have to be patient. I don't doubt I have GCA but it would be good to have summit on paper to quell any doubters.

    She wants me to be on A acid but am not keen. Have bone density scan in morning. Also aspirin. The only worrying thing is she St out a plan to reduce and it wasn't til I got home and worked it out that I realise it's set out to go from 40mg to 0mgs in 14 months! She also favoured methotrexate to assist the reduction if need be so I may have a bit of a battle there. Altho many of the symptoms have now gone on the 40mgs it hasn't completely resolved but am exhausted thru lack of sleep and have had swollen feet which have been left painful when they go back down. Still feel positive tho so that can't be bad. I need to correct something I put at top. The clinic is at the Nuffield orthopaedic hospital in Oxford (affectionately known as The Noc). The surgery is gone up the road at the John Radcliffe Hospital. Am experiencing nasty muscle pain in left buttock near to spine (just where it splits of down the two legs) really really sore to walk and lift leg or put weight thru it. Fine when not moving, sitting makes worse. I didn't think I was gonna make it back from the shops on Monday (no car) it got tighter and tighter and more sore with every step. Had acupuncture yesterday which brought relief. Could this be sciatica, it's not in my leg just left cheek. Had it on right side last month but no where near as bad and it resolved itself.could it be the steroids making it worse?. What about the periformis? muscle or this myofacial pain u speak of? I seem to have prattled on but it's been quite a wk and lots to say/ask. All the best to everyone out there. Keep smiling. 😎 I will if u will cc

  • That all sounds good - any reduction scheme will be subject to what happens so it may take more than 14 months! Often GCA is quicker to deal with than PMR - they don't know why since they are so similar but it just is. Many specialists also speak of "cure" with GCA whereas it is only remission for PMR. Some people never have PMR symptoms with GCA and their course can be smoother once the inflammation is well under control.

    Needless to say I would suggest trying Bowen therapy for the low back pain - it could be either of the things you mentioned and Bowen will help with both. It would be a good start if you can afford it - I do realise that is a limitation for many people.

    Now rest - if it is GCA it is a serious illness, even though you can't see much, it's all hiding beneath the surface. Rest and sleep (if you can on 40mg pred!) are nature's healers and give your body its best chance to sort itself out.

    Looking forward to an update when I get back from my trip to China.

  • Sorry me again. Encouraging to know that GCA responds more quickly being the more serious but it was more the fact that I have pmr as well that made me surprised/concerned that she even considered it could go in such a short period of time. Time will tell. She did go on to say that 20% of GCA patients go on to develope an aortic aneurysm at a future date so constant monitoring is on the cards. Another reason I am hoping this biopsy is positive so that there isn't a question mark over future care. As I said before I feel very positive about it all which helps ( despite swollen feet at mo, a new challenge ). I hope you remain relatively symptom free for China, sounds like an amazing adventure, I have Chinese friends and two mates living over there they love it and wouldn't change it for the world despite the pollution. Zaijian. Enjoy cc

  • She does sound very realistic since she mentions the risk of aneurysm and monitoring - I suspect she does the reduction plan to encourage hope in her patients and there are people who would probably manage it. The secret is to avoid a flare that then results in a struggle to control it again so if you notice any sign of the symptoms you had at first reappearing don't hang around but contact her immediately. Have you been given a rheumatology specialist nurse? Or other contact? Don't bury your head in the sand if anything happens - get right back to them.

    Good luck.

  • Hi Carrollee,

    All your symptoms get a tick from me, but I never had tinnitus. I had exactly the same issues (on right side) over four years ago. My deafness came a bit later. Sudden deafness in right ear on waking up one morning... it came back... then went again, and again and again... and eventually after three months settled with about 90% hearing loss.

    When first diagnosed I was prescribed 30mg pred... immediate relief, and then on seeing the consultant he increased this to 40mg, and I never had the return of pain until my pred was tapered to too low a dose. The ear and jaw pain you are experiencing suggests too low a dosage of pred. I would increase it on your next dose to 20mg for one day only, to see if things improve.... and then inform/check with your GP.

    On the hearing issue.... get it checked out.... if at all possible you do not want to lose your hearing... wearing hearing aids is only as a last resort, and comes a miserable second to normal hearing.

    Good luck.

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