Hi everyone, I am new to the site. I was diagnosed with GCA and PMR last November with all the symptoms, headache, scalp pain, jaw pain, episodes of loss of vision and PMR related symptoms. Fortunately my GP figured out what was going on and after a massive dose of prednisone all the symptoms went away except for the jaw pain. My inflammation numbers have come down but I am still on high dose (55 mg) prednisone as I don’t seem to be able to get rid of the jaw pain when chewing. Has anyone else had continuing jaw pain, I wonder. I tried reducing to 50 mg but then also started experiencing hip and joint pain which has improved once I went back to 55 mg. Of course, I am experiencing all the “joys: (!!!) of high dose prednisone .... insomnia, swelling, and the like ... so would really like to start tapering and am not sure if I should wait until the jaw pain goes away completely. I have lived with MS over half my life and been in a wheelchair for 20 years. However the MS has not stopped me from doing anything. I was a full time teacher before I retired and still did some speaking and teaching before I had to deal with this latest challenge of GCA. It has been very helpful to find others who are living well with all this. Thanks for any advice you can give.
Jaw pain: Hi everyone, I am new to the site. I was... - PMRGCAuk
Jaw pain
Welcome Charka to the site no one ever wants to join.
Before I go any further can you put your story in your Profile, just after your Hi Charka, this helps when people can look at the history and answer, hopefully the question. Ask away however odd the question may seem to be.
I had GCA but did not reduce my pred until all the symptoms had disappeared.
Did you get any add-ons at the same time, ie AA, Adcal etc.?
It might be that your continuing jaw pain could be tooth related - perhaps a visit to a Dentist just to make sure. If you have been given Alendronic Acid, before you take it it is a good idea to visit your dentists as they are not keen to do work on people who take AA.
Now hold tight others will be along soon who know much more than I.
Thanks for the helpful advice. I didn’t get any add-ons but also think seeing the dentist might be a good idea. I wondered if it could be TMJ but the symptoms of TMJ are different than the jaw pain in GCA and not confined to the process of chewing so it does seem to be GCA but a trip to the dentist certainly wont hurt!
I took Alandronic Acid for 20 years before my dentist told me my jaw was crumbling and the only help I could get was to have my teeth removed, am still deciding whether to have it done but my Xray shows that my teeth are empty, so I obviously have necrosis of the jaw. please take AA with care and only short term !!
So sorry to hear of these troubles. I haven’t been recommended anything but prednisone at this point but will certainly keep in mind what you have shared about Alandronic Acid. Thanks for the information.
Not recommended for more than 4 years now without a revision ….
Thanks for letting me know.
My jaw pain went along with all the other symptoms…so bit surprised that you’ve had it all the time ..but the return of other issues indicates that 50mg was a step too low, so returning to 55mg was good move. Suggest you stay there for about 3-4 weeks to see if the jaw pain can be sorted.
You might like to look at this, in case it not totally GCA -
hopkinsmedicine.org/health/...
Thanks much. I will have a look at the site you gave me and I will stay on this dose and see what happens!
The fact you had a return of symptoms with such a small reduction does make me wonder if you could actually do with a bit MORE pred. Some people need up to 80mg or more to get things really under control. Another approach is to give a 3 day pulse therapy of 1000mg per day as an infusion - and afterwards it is typical for patients to be able to reduce more easily and despite the massive starting dose, the cumulative dose of pred over time can be much lower.
Have you just seen the GP - or have you had an emergency referral to a rheumy? GCA is a medical emergency and really does need input from an expert rather than a GP.
Is there any chance the MS could be playing a role?
I do have an appointment with a rheumatologist but couldn’t get an appointment for a couple of months. The only MS related issue seems to be worsening of muscle weakness especially in one leg. Thanks for the input. I will see if I can ge the appointment to the rheumatologist moved up.
It is an emergency - like a heart attack or a stroke (to all intents and purposes, loss of vision with GCA IS a stroke) so an emergency requires an emergecy response. No-one would have to wait for 2 months after a heart attack would they? It is the wording the GP uses that is critical - urgent just means sooner than routine, not what most people think of as being urgent. And with current waiting times, urgent can still be months.
Hi Charkha. I was dx with giant originally in May 2019. Had to go to 80 mg prednisone, then 60... a few times to get jaw, tongue & other gca related symptoms under control.
Please get earliest appointment or ER visit with unmanaged gca symptoms. I've been on vit d2 and d3, calcium, dexilant ( or other ppi MAY be needed) have dexa scan asap to determine bone density status (biphosphonate MAY be needed - careful consideration and for sure dental care prior to bone drugs if you go that route. ). Actemra (tocilizumab) may be very helpful and should be seriously considered.
I have sometimes monthly labs, and always labs at least every 3 months.A good primary Dr, rheumatologist and ophthalmologist makes the journey tolerable.
The people that work this site will be a vital source of up-to-date and personal information and support. Not an easy journey but you can do this.
🥰
Thank you so much for all the information. I will definitely follow up with the dr. And also did not know about all the add ones except for calcium, magnesium, and vit. D. That is also very helpful. All the input from all of you at this site is not only helpful but helps me to know that it is possible to keep going with this wretched disease,!!!
I have had GCA since 2019. I am now having a flare and jaw pain is constant..would call it a jaw ache and has nothing to do about chewing. It is not teeth related. Also have bad headache, neck pain. I was down to 2mg Prednisone. Prednisone does nothing for me, I respond better to Methylprednisolone. I am on 8 mg now (for 2 days) and still miserable. Difficulty with Methylprednisolone is that the smallest dose is 4 mg and makes tapering below 2 mg difficult due to having to cut pill into quarters.
Hi Charkha,Your message prompted a thought about Trigeminal Neuralgia. I was diagnosed with that about 17 years ago - long before my PMR/GCa diagnosis.
I take gabapentin for TGN and it works even when I was on high Pred. Good luck.
Hello Charkha,I was diagnosed with TGN in 2005. Eventually in 2005 I was given gabapentin for the pain management. PMR arrived with classic symptoms in 2019. My hearing has got worse over this time and have been wearing hearing aids for 14 years. I take gabapentin for the fascial pain and now on a small amount of Pred after slowly reducing.
Best wishes.PickyQ
Thanks for this information. Hoping to see rheumatologist for first time next week and all this will help me to ask all the questions I have. Continued hearing loss has been one of the things I have definitely experienced since gca and I was wearing hearing aids before the diagnosis. All the best to you too.
You are aware of the link between GCA and hearing loss?
Yes. I read a very helpful link you put up for me earlier on this. I was sad to see that it said a percentage of patients don’t get it back . I am hoping, probably unrealistically, that high dose prednisone could also affect this and it may improve in the months when I am beginning to taper.
Like sight, depends how much damage is done before the Pred can get to work on the affected blood vessels.
Yes, I was afraid of that! The worst hearing loss is in my left ear and I wasn’t aware of the loss when I was first diagnosed at the time of episodes of loss of vision and immediately put on the massive dose of prednisone for 3 days which cleared up the headache, scalp pain and vision problems immediately. The jaw pain continued for quite a while on the then dosage of 60 mg prednisone for several weeks so maybe the damage was continuing on the hearing problem also at that time as you point out.
Yes could well have been….the 3 days doesn't always work, but obviously docs don’t want you on that for any longer.
I’d already lost sight in right eye before diagnosed - put on 80mg, and stated there for 2 weeks until Ophthamologist was sure other eye was ok…..but then another 8 weeks on 60mg.
Optic nerve completely starved of oxygen because ophthalmic artery blocked (although only 3-4 days of sight issues) - in that case nerve never recovered …I imagine similar can happen if/when 8th cranial nerve is starved because internal carotid artery is blocked.
I was sorry when I read in an earlier post about you losing your sight permanently. But you have been, and certainly are, an example and encouragement to the rest of us about carrying on no matter what. So, as I have been fortunate enough to keep my vision, I will get along with loss of hearing if I have to thinking of others like you who spur us on! Thanks for all you do!
🌸
Please stay on the Prednisone as long as they say, my husband had PMR in 2014 took Pred. and gradually went down to 5mg. However, had pains and exhaustion, headaches, etc. doctor said he didn't have PMR anymore so should get off Pred. however, pains returned and so was on Pred. for years. His doctor didn't seem to worry about all the different pains, exhaustion, headaches etc. just said you get exhaustion when older, all this led to GCA and it wasn't diagnosed in time no tests etc. lost one eye in hospital had massive doses of steroids and then home with one eye still seeing. within a week he was back in hospital for the same treatment for the other eye...didn't work so now he is vision impaired, basically blind and the doctor didn't even say sorry for your condition. So what ever you do get treatment right away and insist on seeing a specialist right away or go to emergency. Hope no one gets such an uncaring doctor like we had. good luck everyone. All our plans out the window now.
So sorry to hear about your husband….you must both be devastated…..hope he is now getting all the support he requires.
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