Giant cell and neaurlgia

[Dancingrosie]

I’m new and this is my first post. I’m on 3mg but just gone back up to 4mg. My question is does anybody get nuaralga. I have gca and PMRGCAuk for last 3years 6 months

[DorsetLady PMRGCAuk volunteer]

Hi,

Where Is your neuralgia? One side of head or face, or both, jaw, on your scalp?

My GCA pre diagnosis felt like neuralgia. If it’s bilateral it could be that you have gone too low on on Pred.

Have you tried paracetamol or similar? If that helps it may be “just, neuralgia - but a bit more detail might help us give advice.

[Dancingrosie in reply to DorsetLady]

I have it both sides of my head pain shooting up from ears and head tender to touch. I did have it when go diagnosed gca/PMRGCAuk but my vision was also affected but this time it’s just neuralgia. I upped my prediction from 3 to 4 but wasn’t sure about going higher?

[DorsetLady PMRGCAuk volunteer in reply to Dancingrosie]

Try other painkillers first then if you're sure it is just neuralgia.

If they don't work then I think you will need to increase. Maybe to 10mg for a few days, and then drop back down to 5mg.

Please keep in contact and let us know what happens.

Obviously if you get any other GCA type problems, then a trip to A&E or ER (depending on where you are) may be necessary.

[Dancingrosie in reply to DorsetLady]

Dear Dorset lady, thank you for your speedy reply. I will do as you suggest and try a different painkiller first. I think it could be start of a flare? I think I see light at the end of the tunnel then it creeps up again. Over the 3plus years had a few flares. Hope this isn’t one. Thank once again

[DorsetLady PMRGCAuk volunteer in reply to Dancingrosie]

No, I hope it's not as well. But you know what to do if it is!!

[Marijo1951]

If it persists, do as Dorset Lady advises and go to A&E at the hospital where your rheumy is based. Have your hospital number and their last letter handy so they know you're their patient and ask to see one of the rheumatology doctors. After 3 and a half years, you definitely don't want to have a serious flare up of GCA. I went twice to A&E when I flared and was taken seriously and treated very well.