Possible new GCA symptom?

[Marijo1951]

When I started with GCA in 2017 I had the severe headaches and scalp tenderness, as well as the chronic fatigue and general unwellness. However I didn't have jaw pain. After taking pred I developed tooth sensitivity as one of the side effects.

In recent weeks I've experienced much stronger painful sensations in my jaw when eating, which at first I took to be the pred side effects. Now I'm wondering if in fact it's a flare up of a fresh GCA symptom, even though it isn't one I had originally. The pain is dull and intense and doesn't feel like nerve pain, unlike the normal sensitive teeth sensation. It goes away after eating.

As always, any useful comments or advice would be very welcome.

[jinasc]

Little bit more info please.

You don't get 'jaw pain' once you are on pred and the correct dose. What dose are you currently on.

Were you prescribed AA?

[Marijo1951 in reply to jinasc]

I'm now taking 5 mg pred per day - have been fora few weeks (from an original dose of 60 mg). I was prescribed AA but only took it twice.

[jinasc in reply to Marijo1951]

AA good that you dropped it. It can cause jaw necrosis.

Your Rheumy should be taking calls - no harm in leaving a message with his Secretary and ask s/he can call you.

You say 2017, (late or early) which ever it is 3 years and down to 5mg is fast in my eyes.

I had GCA for 5 years and I did not get that far down until around the beginning of the 5th year. Now we are all different and I recognise that all the time.

I would up your pred to 10mg for two or three days, and see if the jaw pain subsides. If it does, then it looks to me that you are on too low a dose to keep it in check.

It won't done you any harm and if it does not do the trick you need medical advice.

What ever you do, watch out like a hawk for a blurred vision or intermittent vision.

Meant to add, try this for your acid reflux, take one unwaxed lemon, microwave for 1 minute (triples the juice) then divide juice into three and take with water before meals.

A Yoghurt with a teaspoonful of honey with your breakfast helps.

[Marijo1951 in reply to jinasc]

The GCA started in March 2017 and was diagnosed in July. As for AA a little bit of research into its potential side effects determined me to tackle my bone density problems by lifestyle choices. I have taken an extra 5 mg of pred today and will again tomorrow. I'll also give the hospital a call.

Thanks for the lemon tip. It seems a bit counter-intuitive to take an acid to deal with an acid, but I've just googled it and a lot of people seem to agree with you, so I'll certainly try it. It has to be better than taking medication on a long-term basis. Plain full fat yogurt is one of the staples of my diet.

[sara44 in reply to jinasc]

What is aa

[PMRpro Ambassador in reply to sara44]

alendronic acid

[SheffieldJane]

I had severe tooth/ jaw pain as part of gastric symptoms after being prescribed high dose steroids. This has gone following Lansoprazole and Entric Coated Prednisalone being prescribed. Headache and general unwell symptoms were my only GCA symptoms apart from indicating bloods and Ultrasound results. Like a roar of heartburn travelling into the jaw - I don’t know if this is similar. Or is yours more like aching whilst chewing?

[Marijo1951 in reply to SheffieldJane]

It only happens when I eat. I think this is why I thought it was a worse version of tooth sensitivity at first. But it definitely seems to be in the jaw itself as well as the teeth. Actually I have had incidents of acid reflux recently after a long time of being free of them, so I'll try to work out if the two things are related. This morning, while eating breakfast, my jaws were bad and an hour later I had some classic acid reflux symptoms - heartburn and a nasty taste.

[SnazzyD]

As Jinasc says, a bit more detail would help. I can’t see any reason why you couldn’t have different GCA symptoms second time round and it does happen. Keep a very good eye on it and perhaps see if you can discuss it over the phone with a doc.

However, it could also be Temporomandibular joint dysfunction. Have a read of this and see if it rings true.

mayoclinic.org/diseases-con...

For me, jaw claudication felt like an increasing tiredness, stiffness and ache like in my legs if I’ve gone up the stairs too many times. By that point I also had other symptoms as well like increasing scalp tenderness, temple pain and base of skull neck pain. I also had TMJ problems during Pred (prob muscle weakness) but it was more like a graunching pain with a gristly feel with a deep ache as well but mainly around the hinge. It has now gone but now if I eat hot food I get an eye watering deep tooth jaw pain which is improving over time.

As a longer shot, but still worth knowing about is sternocleidomastoid syndrome

healthline.com/health/stern...

[Marijo1951 in reply to SnazzyD]

Thanks for bringing these to my notice. I'd never heard of either condition before. The pain I get is all along the jaw right round to the front teeth (mainly left side) more than in the hinge, and it definitely happens with eating rather than at other times. That pain you describe when eating hot food sounds very similar, although the temperature of the food doesn't seem to have any bearing on mine.

[Horrified in reply to Marijo1951]

I have PMR, awaiting results of TAB for GCA confirmation. I had excruciating jaw claudication 24hrs/day, while eating or not. Dentist x-rays showed no dental issues. Turned out to be one of the symptoms of my PMR, GCA(?). Completely resolved after first 2 days of taking Prednisone 10mg (low dose due to low body weight & small frame)

[PMRpro Ambassador]

An Australian group tested this as a diagnostic test in GCA:

Chew gum at 1 chew per second for 2 minutes. Development of faw pain as a result which resolves once you stop chewing should be taken as an indicator of possible GCA.

What you describe certainly fits jaw claudication - and warrants a medical opinion.

[Marijo1951 in reply to PMRpro]

Thanks for that tip. Unfortunately I haven't any gum and for reasons I won't bore you with, I can't go out and buy some! I just pretended to chew gum for 2 minutes staring at my kitchen timer, but there was no pain. However I suppose you must need the 'resistance' of the gum for it to work properly. As I mentioned to jinasc I'm going to give the hospital a call. There's usually a rheumatology nurse available if not one of the doctors.

[PMRpro Ambassador in reply to Marijo1951]

Can't think of a substitute! I think the idea is they can use it as a standard low resistance thing. I get jaw "tiredness" when I eat hard things (more than a single bite of carrot) or a chewy bit of steak! Not really pain though. But it still makes me wonder ...

[SnazzyD in reply to Marijo1951]

A rubber band?

[PMRpro Ambassador in reply to SnazzyD]

As long as she doesn't swallow it!

[Marijo1951 in reply to PMRpro]

I'm so dopey at present I probably would - nasty thought!

[PMRpro Ambassador in reply to Marijo1951]

You that bad?

[Marijo1951 in reply to PMRpro]

Slightly better now - I've had a nap. I haven't called the hospital yet. I'll try tomorrow and, if of any interest, I'll report the results.

[PMRpro Ambassador in reply to Marijo1951]

Of course it is of interest!!!!