trigeminal neuralgia

[jmfmwc]

Hi everyone,
I had been doing quite well on Rebif since diagnosis (Nov 2011). This past April I started to have real facial pain that sent me to the dentist and then to an ENT. I was finally diagnosed with trigeminal neuralgia.

I was started on a combo of amitriptyline and carbamazepine. These controlled my pain pretty well and then 3 weeks later I woke up with a horrible rash and fever. Come to find out, I was having a serious reaction to the carbamazepine! I spent 5 days in the hospital and now am on no treatment at all.

I had to stop my Rebif as well since my white cells had been decimated. I'm now staying off any DMD for a few months while my immune system recovers. I'm wondering if I should start on Gilenya or maybe something else. I have a month of doctors appointments coming up so I'm hoping we can everything back on track!!

Any suggestions or recommendations would be greatly appreciated!!

[22cyclist]

Hi: I also have TN and take Tegretol. It didn't really do much for me, so they tried Trileptal, which is a cousin to Tegretol. It works great. If it is too close in ingredients to Tegretol, you can try Baclofen and Neurontin, or Lyrica.

I also had the same reaction to Rebif that you did except it was with all of my blood cells. My neuro put me on Tysabri, but the pills were not out yet. I love the Tysabri, but am also JCV-. It is a personal choice. You have to read about the drugs out there and decide which side effects you can handle, and how the efficacy of the drug matches up to the others.

I wish you luck and am sorry you have had such a hard time.

Take care
Lisa
Moderation Team