painfully jaw when chewing

[Lacelady]

over the past week it has become painful when I chew. I don’t have a headache, tender scalp, or blurred vision . I was wondering if it is connected to my GCA.

i have been trying to get an appointment with a doctor and if i took the trouble to explain the hoops i have had to go through it would fill a book .

I still don’t have an appointment but someone is supposed to be ringing this afternoon so I thought I would ask your advise so that I have something to discuss with them.

Thank you for your advice

[DorsetLady PMRGCAuk volunteer]

Does it stop aching when you stop chewing -as per this -

sydney.edu.au/news-opinion/...

It does need to be considered a GCA symptom - but could also be a TMJ issue -

nhs.uk/conditions/temporoma...

[Lacelady in reply to DorsetLady]

Thank you for the information. It does stop when I stop chewing and if I clamp my teeth together it is not painful

[PMRpro Ambassador in reply to Lacelady]

Is it an aching, tired sort of pain? It does sound sufficiently GCA-ish to be taken seriously.

[Lacelady in reply to PMRpro]

No it is fine when I am not chewing . I can eat less hard foods with no trouble but even crunchy serial can hurt . I am going to treat it like GCA until I know otherwise as you suggested.

Thank you for getting back to me so promptly .

[DorsetLady PMRGCAuk volunteer in reply to Lacelady]

As PMRpro says does sound GCA-ish so please take that tack when you are called.

[SnazzyD]

My GCA jaw pain felt like the muscles were cramping and running out of steam when chewing. It was more like a cramp. TMJ issues felt more like a cocktail stick in the joint that could radiate out sometimes. It was worse the more work my joint did and if I opened my mouth wide or tightly shut.

[Lacelady in reply to SnazzyD]

Thank you all for your input. The doctor rang and he sent me straight away for a blood test and also sent some 5mg tablets. I will take 10mg will that be enough? I will see what the bloods say and go from there.

[DorsetLady PMRGCAuk volunteer in reply to Lacelady]

Do you mean an increase of 10mg? Or 10mg in total… not sure what you are on at present…

I’d be inclined to take an extra 10mg for a few days… .untilyou get something back from GP - and hope it helps…but you’ll have to see.. it it’s doesn’t then you’ll need to speak to him again.

[Lacelady in reply to DorsetLady]

At the moment I am at 3.5 mg so I am suggesting going to 10 mg as soon as I get the pills . I will take 5 mg tomorrow as a precaution.

Do you think that is a good idea.? Or should I take more ?

[DorsetLady PMRGCAuk volunteer in reply to Lacelady]

I think you need at least an extra 10mg for sure, even an extra 15mg wouldn’t hurt for a few days but if you don’t feel a real improvement after 3-4 days - you may need more.. so see how weekend goes.

Better to take a bigger dose for 5-7 days than not enough - and as it’s only short term as a trial you can drop back down no problem if it’s not GCA.

Did the GP suggest a time scale or is he waiting on bloods?

[Lacelady in reply to DorsetLady]

No the doctor didn’t give a time scale and I am cross with myself that I didn’t ask. I am hoping he will get back to me when he has the results. Were you suggesting that I take 10mg plus the 3.5 I am on ? Or just the 10mg. ?

Unfortunately it is the weekend and I might not know until Monday which worries me. I don’t like the delay.

Thank you for your help it is such a relief to know there is someone out there who knows what it is like and willing to help. I keep struggling along on my own without any medical help , I sometimes despair.

[DorsetLady PMRGCAuk volunteer in reply to Lacelady]

Either 10mg or 15mg [whichever you fedl happiest with] on top of your usual 3.5mg… 😊

[PMRpro Ambassador in reply to Lacelady]

If you get any worsening of the symptoms - above all, visual symptoms. but jaw claudication is also a red flag symptom so any worsening - get to a big A&E asap. GCA with visual symptoms is a medical emergency,

[Lacelady in reply to PMRpro]

Yes I will. I think I have been a bit lax as it is . Not a to act sooner. I have been suffering with lower back pain for five months but couldn’t get an appointment with a doctor , just nurses but this jaw pain finally got results.

[jessy99 in reply to Lacelady]

Unless your numbers are off the charts (in which case they will likely get in touch) it might not change much — my jaw frequently aches during PMR flares w/o it being full on GCA… Hope you can rest & enjoy the weekend feeling better with more prednisone. Get emergency help if it escalates acutely (massive head/jaw pain, vision disturbances etc). Feel better 🙏🏼🙏🏼🙏🏼

[Lacelady in reply to jessy99]

Thank you for replying. I will be aware if things deteriorate. After a disturbed night tossing and turning I am hoping to calm down now that I have the medication.

[Obscureclouds]

For about couple of weeks before diagnosis i had a lot of pain in my jaws which made it really difficult to eat or clean my teeth. But mostly it wasn’t an issue talking or keeping my mouth shut. Although I had blurry eyes ( but something I’d often had for years) I had no headaches or discomfort around my temple or ears. I was diagnosed with GCA although my illness has subsequently been referred to as LVV.

[Lacelady in reply to Obscureclouds]

Thank you for that information. It is interesting to hear you didn’t have the usual headaches and sore scalp. I think I wasn’t worried as it was only my teeth that hurt.

[Obscureclouds in reply to Lacelady]

Yes I can’t remember how many years it’s been since I had a headache I didn’t have any joint/muscle aches and pains either. On diagnosis I was put on 60mg Pred for 2 weeks then 50mg Obviously I was just starting out but I think it took about a week or so before the jaw pain began to ease. Good luck on getting it sorted and hopefully it won’t turn out to be GCA

[Hobbitses]

Cautionary tale: the original symptom that drove me to the GP was that I couldn’t finish a bowl of granola because chewing wore my jaw out. Pain was only while chewing. I was already on 5mg Pred for PMR and, after feeling the arteries in my temples, the GP told me “up your steroids x 12 (ie 60mg) to save your sight”. I thought she was nuts but took her word for it. My Rheumie gradually took the steroids down to 9mg - evidently too fast as it turned out, because I lost most of the sight in my right eye permanently 6 months later.

[DorsetLady PMRGCAuk volunteer in reply to Hobbitses]

So much for Rheumy being the expert in that scenario then… disgraceful.🤦🏻‍♀️

[Sophiestree in reply to Hobbitses]

I'm so sorry this happened to you when clearly your GP was on the case. I hope you now see a different rheumy and that the original one is hanging her head in shame.

[Hobbitses in reply to Sophiestree]

Not so much was understood about GCA in 2016…

[DorsetLady PMRGCAuk volunteer in reply to Hobbitses]

Probably even less in 2010 by GPs -but no excuse from Rheumy , it’s been around a long time!

See this -

Abstract

In 1932, Horton, Magath and Brown reported two cases of a "new form of arteritis affecting the temporal vessels ... which probably represents a new clinical syndrome". In reality, several publications, devoted to the same pathology already preceded this article. The most ancient is that of an ophthalmologist from Baghdad, Ali Ibn Isa (940 to 1010). In his memories, translated and published in english in 1936, the author states that "he undertook excision and cauterisation of arteries to treat patients who were suffering from heat and inflammation of their temporal muscles and which sometimes ended in loss of vision ...".

[Hobbitses in reply to DorsetLady]

Fair enough, no excuse!

[Lacelady in reply to Hobbitses]

That is so scary. I do feel for you that is a terrible thing especially as you were put on a high dose to start with. It goes to show they don’t always get it right.

Thank you for sharing

[Afibflipper]

Sorry if I repeat anything already replied as in a rush & have only read a couple. I had TMJ clunking cracking jaw on one side for years - eventually it dislocated. Once that was fixed ( by applying warm hot water bottle (not hot) then massaging in an anti inflammatory cream it eventually settled.) This advice followed by a maxillary facial consultant. I now have issues on other side. I jaw clench in my sleep and wear a night guard. Definitely go to your dentist, try eating things that don’t require a lot of heavy chewing, rest your jaw. Hope this helps

[Lacelady in reply to Afibflipper]

Thank you. That is very interesting. I know I am looking on the black side but I think it is connected to GCA unfortunately. But then it is better to be on the safe side with this disorder.

[cmToddy]

I had this and sometimes when eating, I could not open my mouth. My doctor diagnosed me with TMJ ( temporal mandible jaw). The other symptoms for GCA followed very soon after. Then P increased to 60 Mg. Am fine now just struggling with cortisol levels. Good luck.

[Lacelady in reply to cmToddy]

Thank you for your reply. It is interesting how different people progress through this illness . At the moment I don’t think my doctor is taking it very seriously so it is a good idea that I have this forum to guide me.

[cmToddy in reply to Lacelady]

I had an idea what the jaw problem was leading to straight away. Can you believe next came face and neck pain followed my sensitive scalp.

[Lacelady in reply to cmToddy]

At least it sounds as if you were caught in time for your sight. I must admit I am feeling like a bit worried

[cmToddy in reply to Lacelady]

You will be fine and get through it one day. Your doctor will put you on high doses if P to protect your eye sight. At this point, might seem like a long journey but never forget , there is an end to it.

[Lacelady in reply to cmToddy]

I wish he had put me on a high dose but he only recommended 5mg. And only gave me one 28 box of pills. I know that isn’t enough so am taking 15mg.

[DorsetLady PMRGCAuk volunteer in reply to Lacelady]

Hopefully they will be enough to take you through until you get a response from him..but if in doubt then either call nhs111 and explain situation or if necessary then A&E. Hope that won’t be the case.. but don’t sit worrying all weekend. Easy said I know.😊

[Lacelady in reply to DorsetLady]

That is the problem I am worrying and not sure where to go or do. I know you are not medically trained but I feel you and the team are more knowledgeable than the doctors. Will 15 mg be enough ?

Thank you

[DorsetLady PMRGCAuk volunteer in reply to Lacelady]

To be honest, I can’t say whether an extra 15mg will be high enough IF It is GCA.

However, as an ex GCA patient if it is that, then I would want more.. but as you say I’m not medically trained -and we are not allowed to give medical advice-which is why I suggested contacting nhs111.

So please ring them -explain situation and say you’ve read the information from the charity (not just the internet) -and would like their input as to what you should do.

Has the increase made any difference? I know it’s very early day.. That’s probably an indicator..

[Lacelady in reply to DorsetLady]

I quit understand about not being able to give advice. I thought it might be like that.

As you say it is early days so I will wait until tomorrow and consider ringing 111 if there is no improvement.

Thank you for your prompt reply it is much appreciated.

[DorsetLady PMRGCAuk volunteer in reply to Lacelady]

Have replied to your new post.

[PMRpro Ambassador in reply to Lacelady]

Sometime waiting until tomorrow is the wrong thing to do. If you have ANY visual symptoms get to a doctor somewhere - GCA won't wait and one person on the forum was seen in the ED and told to take pred NOW - after it had been decided not to put them on an infusion in the ED. They decided to wait until morning and take the pred with breakfast. When they woke, the sight was gone in one eye. The advice used to be to take 60mg pred and seek medical advice - in that order.

[Lacelady in reply to PMRpro]

So far I don’t have any problem with my vision but I must admit that I am scared. My doctors seem very lax but I do blame myself somewhat as I put up with my lower back pain when I wasn’t being taken seriously. I should have been more assertive. Isn’t hindsight a wonderful thing?

If you were me would you ring 111 for advise?

Thank you for your concern

[Lacelady in reply to PMRpro]

I have rung 111 as suggested and I am so glad I did. I got this amazing out of hours doctor who went through everything and decided I needed to go to 40mg. I told him about the blood test results and he was surprised that no one had contacted me. Any way he is writing to the surgery and has sent more pred to the chemist for me. I can at last relax a bit.

I told him that I have been slowly reducing through the past 5 years with the help of this group and he complimenting me on knowing about symptoms and such. All down to you guys. I can’t thank you enough

[DorsetLady PMRGCAuk volunteer in reply to Lacelady]

Good news -d virtuous like to boot this response to your new post -so people are aware .