Continuing jaw claudication

[allykat]

I was diagnosed with GCA 8 weeks ago and am responding well to treatment. All symptoms disappeared within hours of taking medication. My symptoms started with what I thought was a headache in late March. What I didn't realise was that I actually was suffering much earlier having had a very sore jaw since October 2014. I notice that my jaw although much better continues to get very sore when chewing food items like almonds. Does anyone else suffer with this and is it possible I may have had some permanent damage in this area? What complicates this issue slightly is that in July 2014, I had a tooth pulled rather clumsily and wonder if some of my continuing problem is connected to this extraction.

[Hidden]

Hi allycat,

I have jaw claudication but not connected with GCA, I have another type of vasculitis called Behçet's syndrome. Unfortunately my jaw/ facial pain whilst much improved is still troublesome. I have had to change my diet, I automatically cut my meals up into small pieces and avoid foods like steak and nan bread etc.

My face is extremely sensitive to cold, I have a scarf on permanently so I can wrap my face if needed! The only good thing is it stopped me putting on weight whilst on high dose prednisolone as I still have to eat fairly small amounts.

I do wonder if I have had permanent damage as you say. The most useful person I have seen about this was an oral medicine Dr who I was referred to by my dentist, it may be worth seeking a referral.

[30048 in reply to Hidden]

It is over three years and I still cannot eat almonds. It took a long time for me to be able to chew again. I also grind my teeth and had a mouth piece so , like you, there may be some overlap but it does take a while to recede.

[PMRandRA]

Don't mess around with GCA Alleykat. Try and get an urgent referral to a Rheumatologist who will be able to tell if the continuing jaw pain is extraction or GCA. The difference is huge because you could lose your sight with GCA, good luck.

[PMRpro Ambassador]

I wonder why almonds in particular?

If there was nerve damage done due to poor blood flow at the start the nerves will take some time to recover - if they do recover. I'm assuming you haven't reduced your pred dose too fast? There is study evidence of the inflammation still being present in GCA even after 6 months on high dose pred (above 20mg) and if the high dose pred was reduced too fast there may still be some giant cells left that are still causing symptoms.

[Runrig01]

Hi Alleycat, I have had GCA symptoms for 2 yrs, but only diagnosed officially in March ( don't ask). In the 2 yrs I have had both jaw and tongue claudication, and like you I find if I chew nuts it sets of the jaw cramping, like Keyes I have modified my diet and avioud steak, crusty bread etc. the difference being though that due to being atypical and having gone on over s long period I'm not allowed the high dose speed. Been on low dose as had PMR 18 months before start of difficult 2 ye journey, so attribute a lot of my problems to taking low dose Pred. If you are not seeing a Rheumatologist I'd request a referral. Good luck x

[allykat]

Thanks everyone for your comments. I am doing so well with reductions and have no other serious issues or side effects that for the time being, will stick with my doctor's advice. Have just been reduced to 20 mg as of yesterday so will see. We are keeping an eye on the jaw to see if it is just taking a long time to settle down or whether it is as good as it is going to get. It certainly gives me little or no problem with normal "soft" chewing. Seeing a Rheumatologist is not so easy as it means a 6 hour round trip on the train and then of course there would be the same for follow up appointments.

[PMRandRA in reply to allykat]

Ahh. with my GCA even chewing soup would switch on horrendous pain. All the best for yours not being GCA but something much simpler.