Any experience with trigeminal neuralgia with wegeners?

[Lamama]

Hubby dx wegeners for 2 yrs now and treatment going well

For the past week has experienced extreme pain and after checking teeth and other nerve problems now waiting for MRI after px of tn

Wondering if another vasculitis surfacing?

[karens62]

I have Trigeminal Neuralgia as well as EGPA. It appeared about 4 years ago. It was hard to diagnose because I have a rare version as it is quite mild, confined largely to one side. When I'm under stress, the trigeminal neuralgia can be worse but it is controlled by carbemazepine. It was very unusual - as is EGPA. Karen

[Lamama in reply to karens62]

Thanks Karen

Hubby has started on carbamazepine but is finding it makes him woozy but seems to be starting to give some relief - what dosage are you on ? He is cautious as it says can cause kidney damage

Also are you on the meds constantly or as needed

[karens62 in reply to Lamama]

Hi, I'm on 200mg twice a day. I recently increased to that amount after a flare of the tgn. I've been on a constant dose ever since I was diagnosed. I sometimes go back to 200mg once a day but then increase when it flares. I am monitored by my rheum for creatinine through regular blood tests. I've taken this amount for 4 years with no problems. But you do need to get regular blood tests - I get them at least 4 times a year now, but in the early days I was getting tested every 6 weeks.

hope that helps!

[Lamama in reply to karens62]

Thank you Karen

That is very helpful!

All the best - hope you have a merry Christmas (if you celebrate) and a very healthy and happy new year

[jayf]

The only thing that suppresses that awful pain for me is Diclofenac (Voltarol)

50 to 100 mgs a time as a suppository. But its not great for the heart. Thats the downside.