Four months into GCA and now suspected trigeminal neuralgia

[Wildlifephotographer]

This is my first post/question. I am almost 5 months in, from first becoming ill, and 7 weeks from a diagnosis with GCA. I think my profile charts the full story to date (hopefully).I am currently on 17.5mg Pred having started at 40mg (for 4 weeks). I have fared pretty well with the taper, to be honest. Even starting to feel like my legs are my own again (though I still could use some more muscle). And I don't miss the initial brain fog!

But this week I started with what I thought was toothache. Dentist declared it 'not dental'. GP is convinced it's Trigeminal neuralgia. Jaw movement, wind (of the weather variety), and hot drinks, even lying down can trigger a wave of 'face ache'. Yet not direct 'food to tooth' contact. I am now on Naproxen plus 10mg Amitryptiline. Fingers crossed.

But I also saw a comment on a recent post with a link to a medical case study about a side effect of steroids being tooth/gum nerve pain. I am open minded (and inquisitive 😉). Whatever the cause, I just want it gone.

Has anyone else experienced something similar? Was it linked to GCA, steroids or just an unlucky coincidence?

[HeronNS]

It seems more likely that oral corticosteroids would help ease the pain of neuralgia rather than trigger it. Would also be interested in learning more.

Your profile bio describes a very interesting life!

[Wildlifephotographer in reply to HeronNS]

Thank you. I, too, thought the steroids would help. Interestingly, the first day I woke with it I popped a couple of paracetamol and then took my Pred with breakfast as usual and I didn't need anything else until 3am when I was woken with it again. But the 2am-4am window seems to now be a common theme! Plus multiple episodes in the day. I am going with the GP diagnosis for now. Because convincing the dentist he missed something is not how I want this to pan out either.

[SnazzyD]

Do you mean steroid induced dentine hypersensitivity? I had that but it was set off my temperature change, particularly going from cold to hot. Drinking a cup of tea whilst having a cold face from being outside would set it off in an instant. It felt like all my teeth were hurting all at once and it was awful for a few minutes. I also had one sided facial pain from temporomandibular joint dysfunction and it lasted until my muscles regained some strength it seemed. I lost a lot of muscle mass due to Pred. Pain from wind against my face was a symptom of GCA for me along with scalp tenderness.

Are your new meds helping?

[Wildlifephotographer in reply to SnazzyD]

Hi. It was your recent comment on someone's post alerted me to the steroid induced link. I can't comment on the new meds as I only started tonight. It's been keeping me awake at night so hopefully tomorrow I will have a better idea.

[SnazzyD in reply to Wildlifephotographer]

Why does the GP think it isn’t GCA?

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

My thoughts exactly ..

[Wildlifephotographer in reply to SnazzyD]

Because the pain doesn't extend to my head/temples. And she feels the symptoms are reflective of neuralgia. But then she also admits the potential for GCA to be causing it is not outside her field. I should have said I am also waiting for the vasculitis clinic opinion on that.

[HeronNS in reply to SnazzyD]

Ah, that reminds me of my super-sensitive teeth, but that started while I was still undiagnosed, therefore not taking pred. I believe Vitamin K2 supplements are what cured it in my case.

[Koalajane]

it sounds awful to have this pain. I don’t really know what=it is but I am concerned that you are being prescribed naproxen whilst on steroids. This is something I was told to be very careful of

[Wildlifephotographer in reply to Koalajane]

I have just read about the interaction. I am on 20mg Omeprazole as a stomach protector and she is only suggesting this as a short term measure to see if there is improvement. I was offered cocodomol but was worried as it once put me in a codeine cycle