GCA Flare or irritation of the Trigeminal nerve

[hbp01]

Hello

I have been suffering from Stabbing/sharp pains in the right temple since mid September, and have been treating it a GCA flare and have increased pred on a couple of occasions. CRP was 11 and stayed win 25mg Pred and had further blood tests and CRP down to 3.

I tapered to 22.5mg pred for 3 weeks and have had more blood testa and CRP still 3.

I had a telephone consultation with my Rheumy about a month ago and my notes have just been updated so I can see full details.

Regis is what she said

" phoned this lady today, she has been on 25m Prednisolone for around 3 weeks now and has been getting sharp, shooting pain on the right side of her forehead but no headache. It can happen around 10 times a day, not associated with any other giant cell arteritis symptoms such as headaches, scalp tenderness, jaw claudication or polymyalgic symptoms such as aching and stiffness in shoulders and hips. We repeated her CRP which has come back as normal, I don't think this pain represents a flare of giant cell arteritis, it is most likely irritation of the trigeminal nerve. She can reduce the Prednisolone to 22.5mg for 2 weeks then reduce to 20mg for 2 weeks and reduce by 2.5mg every 2 weeks until she gets to 10m and then reduce by Img per month. If there are any concerns she can let us know and we will arrange blood tests to recheck CRP. If she is unable to reduce any further due to headaches we could initiate consider Methotrexate after further discussion."

She thinks that the stabbing pain is due to irritation of the Trigeminal nerve.

Does anyone have any experience of this ??

Thank you in advance

[SnazzyD]

I had trigeminal pain due to a viral attack of either early shingles or herpes simplex that was on my nostril and lip. It was sorted with a week of antivirals after the corner of my eye started to feel prickly on the skin. In the run up to this I was having stabbing pains in the temple that would make me jump. I had had it before when I had a large cold sore on the other side and resolved over a couple of weeks. I had also had it without a cold sore after being laid low from a viral infection previously. The pain wasn’t quite in the place of my GCA, it was lower and just forward of the ear. I can’t say my GCA pain made me jump like this did.

It is very difficult to know from one person to the next what one’s own particular cause is. I believe some people get trigeminal irritation with GCA too. It is possible that Pred reduced inflammation of a viral cause if the symptoms reduced with an increase. Has it got worse with dose reduction?

[Sammo47]

I've had GCA for 2 and a half years and have, like you, experienced sharp stabbing pains in my right temple area. My doctor told me that it was due to nerve damage or irritation. It gradually stopped happening.

[hbp01 in reply to Sammo47]

Thank you that isa reassuring, hopefully mine will reduce !!

[SnazzyD]

Did you have a biopsy done at any point?

[hbp01 in reply to SnazzyD]

Hello

I didn't have a biopsy as in A&E they put me on Pred very quickly and then referred to Rheumatology and by the time I had appointment I had been on 40mg pred for over a week and they said inflammation would probably not show.

[PMRpro Ambassador in reply to hbp01]

Actually - not entirely correct. The chance of it showing is reduced - but the residual signs of the inflammation persist for some time. And the halo sign in the ultrasound persists better.

[hbp01 in reply to PMRpro]

Thank you !!

I also think that the fact that I had a suspected TIA 3 years ago meant that they did not want to do it ??

[PMRpro Ambassador in reply to hbp01]

Can't see why - do they refuse to do surgery on you? Are you on an anticiagulant?

[hbp01 in reply to PMRpro]

On Clopidogrel

[Nextoneplease]

Hi, I have had this sort of pain since a few months before I was diagnosed with PMR, and then later diagnosed with GCA.

As Snazzy says, the pain is severe, enough to stop me in my tracks and induce sharp in take of breath. It only last a few seconds though, so I’ve tended to think “oh thank goodness for that”, and try to put it out of my mind. I had around half a dozen episodes before PMR showed itself, and the pain was so different, I never linked the two things. Same with GCA, that pain was more diffuse (though nasty) and reduced vision was the most worrying symptom. Like you, there has not been any apparent link between raised CRP and ESR, and this pain.

Once I was on prednisolone, the pain stopped. Now that I’m down at 6mg, I’ve had a couple more very brief but severe episodes.

Honestly I never thought to link it to PMRGCA - but maybe I should?

Good luck and thanks for raising this 😊

[MiniSpec]

One question I would ask is about your eyesight. Have you had any tests done to see if you need glasses? I know that when my eyes are strained I sometimes get shooting pains in or around one eyeball or the other.

When that happens I normally go for another eye test to see if my prescription has changed, as eye strain can lead to all sorts of odd symptoms.

My next door neighbour had fainting fits when he was young due to eye strain, but they were cured by fitting him with glasses. He now wears contacts but told me he is aware that eye strain can lead to symptoms that seem out of place for the cause.

[Nextoneplease in reply to MiniSpec]

Interesting! I have lost a lot of sight in my left eye due to macular degeneration, so my right eye works overtime. I have six monthly check ups and often have new prescription glasses, but the strain could be part at least of the problem.

[ubaoz in reply to MiniSpec]

I occasionally got strong, sudden, shooting pains in my eyeballs, similar to what you describe, and my optometrist said that if eyes get overly dry without us realising, this can sometimes cause such pains. Regularly using Manuka honey eye drops has solved that particular problem for me.

[hbp01 in reply to MiniSpec]

Hi

I do wear glasses and have had 3 eye tests since end of August all different !! In have ordered new glasses but I'm not sure if they will fix the trouble focusing and the blurry vision !!