Jaw pain

[lyndamcw]

Anyone have any info..I have right sided jaw pain on moving my jaw..nothing at rest and I can not open my mouth wide..? I am having to cut my food small to get it in!!! It is sore to yawn. I have PMR GCA and currently on 9mg pred after a year.thanks

[DorsetLady PMRGCAuk volunteer]

Hi lyndamcw

If it's one sided and you aren't having problems swallowing wouldn't think it's connected to GCA - although one never knows!. It does sound more like a mechanical problem with your jaw itself. Think you need to see doctor and/or dentist.

[Alfryd in reply to DorsetLady]

Hello, I have PMR only (so far!) and I have the exact same thing although it has switched sides. I can barely get my mouth open enough for a sandwich. My ear on the same side hurts. I feel like I have a bad tooth - and I have even had a sore throat on that side. Then it got better. Then all of a sudden I had it on the right side. I definitely think it is due to PMR. I am now on 20mgs of Prednisone. I had gone down to 6 and had a relapse and rheumy put me back up to 20 for the last month. I think he could have tried to put me up to the lowest number that worked but I must say I still have shoulder/neck/upper arm problems at 20. No headaches and eye doctor gave me good exam so far. Right now not suffering from jaw problems but since I seem to be following "the pain of the week plan" not sure when or if it will come back.

[lyndamcw in reply to Alfryd]

Thank you for replying..Yep mine is right side and ear pain..see my GP on Wednesday so see what he thinks...I was thinking arthritis...not arteritis of the joint..time will tell

[DorsetLady PMRGCAuk volunteer in reply to Alfryd]

Hi,

Have you had it checked by dentist? If not, think that might be good idea.

My jaw pain was bilateral along with aching teeth plus extreme difficult in swallowing, at its worst I couldn't even eat a sandwich - but as we're always saying 'not everybody is the same, nor gets the same symptoms' so can only suggest monitoring it, but obviously if it gets any worse you need to seek medical advice.

With your added neck/shoulder/upper arms symptoms it sounds as if 20mg is still not enough. Have you had your bloods tested since the increase in symptoms - that's always assuming yours were raised at the beginning. Those figures should give you an indication of what may be occurring.

[Cinka in reply to DorsetLady]

Were your problems associated with GCA or Pred, DL?

I am experiencing unilateral jaw pain and stiffness and some difficulty swallowing.. 😊

[DorsetLady PMRGCAuk volunteer in reply to Cinka]

Hi,

GCA , it was pre diagnosis so no Pred.

I know you have GCA and started at 40mg, not sure what you’re on now, but you may have gone below the level of Pred you actually need. Do you have any other symptoms, like fatigue or joint pains?

Think you need to touch base with doctor to rule out other things, get ESR checked etc and maybe suggest an increase in Pred to see if that helps.

It may be GCA, but just as likely to be something else, so best get it checked.

Please let me know

[Cinka in reply to DorsetLady]

Hi DL!

On 20, using your plan: first week on 20 was looking good and was hoping to taper by another 0.5 this week then probs started..!

I do seem to struggle with niggles when on around 20 -have been up and down a few times due to this but will get it checked out..

Jaw is stiff and some swallowing probs.. sometimes feels as though I have a ball of cotton wool stuck in my throat.

I am tired all the time - not getting enough sleep!

Some muscle tenderness comes and goes.

I am taking gastro-resistant pred and find that the effect wears off relatively soon with the return of residual scalp tenderness - nothing like it was, tho'

PMR pro had mentioned that coated pred doesn't peak as effectively as non-coated but am unable to go back to those even with Lansoprazole as stomach badly affected.

Added to that my Rheumy had said that any return of symptoms when tapering means it is not GCA so he would not be offering me the support I need.

I am seeing my GP again to ask about seeing a vascular consultant instead..

Wish I could just walk around without my head l

Thanks for replying - much appreciated as always.

Hope everything fine with you, DL. 😊

[PMRpro Ambassador in reply to Cinka]

"Added to that my Rheumy had said that any return of symptoms when tapering means it is not GCA so he would not be offering me the support I need."

What a prat!

Beware: vascular consultants are usually surgeons and deal with vascular disease - not vasculitis. Different set of disorders. I'm afraid it is a rheumy you need - but you do need a different one.

Where are you?

[Cinka in reply to PMRpro]

Thanks for your reply, PMRpro.

My Rheumy did offer me a second opinion when I disagreed with his views, so it was clear to me that it was impossible for him to give the support I needed,

We all know that tapering is not straightforward but as he thinks it should be and that if it isn't it means you don't have GCA - well, you just can't work with that, can you?!

He was concerned about adverse steroid side-effects tho'..

I wonder how there can be such widely differing views among these guys - and gals!..

I am in Shropshire and seeing my GP this week to make a decision on a different consultant - here's hoping!

Hope you and your husband are well.

Thanks again! 😊

[PMRpro Ambassador in reply to Cinka]

Put a post up to ask if anyone has a sensible doctor. It is worth travelling to get a good one but the gold star award ones are in Chertsey and Leeds!!!! There are other good ones though.

[Cinka in reply to PMRpro]

Yes, thank you, PMRpro!

There were a couple recommended to me previously but, again, at a distance but I may find that I will have to travel.

Not ideal for me but I'm desperately in need of a Gold 🌟!

Really appreciate the time, effort and support you and DL give to 'US LOT' . . with apologies to Mark Benjamin!

Take care. 😊

[DorsetLady PMRGCAuk volunteer in reply to Cinka]

I was going to say same as PMRpro - so no surprise there then, where do some of these medical peeps get their ideas from?

I know it’s not really recommended for GCA, but if you don’t want to increase the dose (which I’m tempted to advise, even by just 2.5mg) then perhaps you could try splitting your dose if you’re finding it doesn't last 24hrs.

But you need to get your doctor to refer you you someone (preferably a Rheumy) who knows about GCA, which your current one obviously doesn’t!

Good at the moment thanks, although just been referred to surgeon for knee replacement. Not going to happen until next year now, but the decisions been made finally, and that’s a relief in one way!

[Cinka in reply to DorsetLady]

Thanks, DL.

I had thought of splitting, but wasn't sure if it would achieve the same effect?

I suppose if it improves. the answer would be YES!

I didn't want to increase again if I could avoid it as have just got down to 20 from 22.5 and I was so disappointed to get these symptoms again, after it looked last week as tho' the slow taper was going to plan - duh!

I might try splitting to see how that goes..

I don't think there is anyone locally who would know much about these conditions of ours, that's why I thought it worth trying someone from the vascular firm.. never mind..

Hopefully things will be a bit clearer by the end of the week.. lol..

Yeah, it makes you wonder, DL!

It does ease the burden, knowing a decision has been made.. wishing you well when the time comes for your op!

Thanks for your continuing help, you and PMRpro.. greatly appreciated.. Don't know how we'd all get through it without you two!!

Take care! 😊

[PMRpro Ambassador in reply to Cinka]

Remember - however slowly you reduce you won't get below the dose you are looking for: the lowest dose that manages the inflammation as well as the starting dose did. The slow tapers just make getting there more comfortable and, by eliminating the steroid withdrawal effects, make it more obvious if it is the symptoms flaring rather than steroid withdrawal. They can be so similar you think you are flaring when you aren't really.

You need what you need - and there is no virtue in trying to cope on less because the unmanaged inflammation is causing other damage if you leave it.

[Cinka in reply to PMRpro]

Thank you for that, PMRpro.

I have been a little unsure regarding what I am aiming for, i.e. to be 100% symptom free or as near to that as possible, which I have also heard stated?

On the initial high dose after a few days symptoms were gone completely but as soon as I hover just in excess of 20mg I do experience some return of symptoms, tho' not as bad as they were at the start.

I am thinking I will be on this dose forever because I am thwarted at this level every time I taper.

Must admit, it is getting me down just a tad!

😞😀

[PMRpro Ambassador in reply to Cinka]

As far as I can gather from a quick look at past posts you have had GCA for about 7 months? Is that right? I think you have probably tried to get too low too soon - and when you flare it always sets back the taper. 40mg was obviously enough at the start but while some people might manage to taper to 20mg in 6 months, a lot of others don't. If 25mg at present is doing the job and 20mg isn't you probably need another month or so at 25mg and then try a tiny drop. You cannot get lower until the GCA and your body are ready.

Your rheumy is ignoring the elephant in the room: you have GCA symptoms at 20mg so it is too low FOR NOW.

[Cinka in reply to PMRpro]

Yes, about 7-8 months.

So I should expect to be 100% symptom-free and not 'at least 70%' as I have seen stated a few times?

Thanks for your time, PMRpro.

[PMRpro Ambassador in reply to Cinka]

The "at least 70%" criterion is for the original initiation of pred - that's what they are looking for as being pretty characteristic of PMR/GCA. Other forms of inflammation causing the symptoms tend to respond but not as dramatically.

[Cinka in reply to PMRpro]

Thanks muchly! 👍

[PMRpro Ambassador]

As DL says - definitely sounds more like a TMJ (tempromandibular joint) problem. Check it with your GP or dentist.

[lyndamcw in reply to PMRpro]

Thanks that's my thinking.I am thinking TMD...as it is really the articulation of the joint that's the problem

[Judy211]

Hi Lynda. The very first symptom I had with GCA was jaw pain on one side...couldn't open my mouth wide and I found chewing really tiring. Swallowing was fine. I thought at the time I might have an abscess starting. Little did I know! Anyway, just might be GCA so be alert. Judy

[Asbeck]

Lynda: Me too. Same as Judy211. (Be careful when reading this. I'm not one of the experts.) One of my first symptoms of GCA was a pain which seemed to be in my ear. Apparently there are glands around the ear. If they don't get a good amount of oxygenated blood, you think that your ear hurts. But if you fly, for example, the pain does not increase as it would for an ear infection. When I'm too low on Prednisone, my "ears" always hurt. Jaw pain where it's difficult to chew is classic GCA. Apparently it's caused by a lack of a good amount of oxygenated blood, and the same feeder artery that causes this pain also affects your optic nerve. In the beginning I remember being so very sick and thinking: "Oh great. Now with all this pain going on I'm going to have to get braces to take care of my TMJ." Eye Docs always ask me if I have jaw pain. In my un-expert opinion it seems as if the "jaw" is right in front of the ear, or can hurt as if the pain is deep inside of your ear. But the symptom of difficulty having the strength to chew is the "jaw pain" which most concerns the docs. Also in my un-expert opinion I think that the "throat closing" and shortness of breath (along rapid heart beat, [for me] very high fever, stomach cramps) are symptoms of a temporary adrenal insufficiency. But my Rheumy said to take my blood pressure. Low blood pressure is a reliable symptom of some kind of adrenal insufficiency. If I wake up in the middle of the night feeling "very sick" then I take my blood pressure.

[lyndamcw]

Thank you so much for that....I was beginning to think it was just me.you describe my symptoms exactly and it does worry me it's connected to eye blood supply.thanks again x

[BonnyQuine in reply to lyndamcw]

In addition to other symptoms, I also had jaw pain and associated ear pain - quite a lot in the early days. (GCA since Nov '16) Most noticeable where upper and lower jaws meet, just in front of ear, sometimes on one side, sometimes on the other, occasionally both at the same time. More on the left than on the right. Made chewing difficult. It has improved a lot as the months have gone on, though I still get an occasional twinge. It never affected my ability to swallow.

So keep an eye on it.

Cheers!

[lyndamcw]

Thanks for your reply

[camerashy]

Hi Lindamcw

I had very bad jaw and tongue pain before I was diagnosed with GCA this April lost about 1.5 stone because I could only swallow soup.

When I started on the preds it helped enormously still get the occasional ache but nothing like I had before. Went to my dentist but all seemed oka