What to do....

[jmfmwc]

Hi Everyone - I need to make a decision as to what to do for a DMD. I've been on Rebif since I was diagnosed in Nov 2011. All had been going well until I ended up with Trigeminal Neuralgia this year. I was given Carbamazepine as a treatment and ended up hospitalized for a week and half with a life threatening reaction.

During this time I had to stop my Rebif since my entire immune system crashed. It's been two months and I still have severe blood abnormalities. I'm waiting to see hematology on Aug. 19th but I'd like to start back on Rebif if possible.

I see two separate neuros (one being an MS specialist) and usually they agree - this time not so much. One believes it would benefit me to go back on Rebif as my MRIs show no progression. The other neuro is against not only Rebif, but every other interferon, leaving Copaxone as the "drug of choice".

I guess my question is, what would you do? The oral medications are out for me as I'm a gastric bypass patient as well and I can't take capsules or anything time-release.

[Kimba22]

Wow. So sorry, and really do hope you completely recover soon!

I'd follow the advice of your MS Specialist. I know mine sees over 1,000 MS patients. They know more about the drugs & their potential side effects than a general neuro who treats several conditions. And, I'm guessing that's the one who wants you off interferons. Now you have a history of your immune system crashing and a blood abnormality. IMO, that's serious.

I have had two different bad experiences when a general neuro kept me on a DMD, when the MS Specialist would have pulled me off. Both times it was during a hospitalization when I was under the care of a general neuro.

I ended up in the hospital for 3 months, with dangerously high fevers, all because the neuro refused to believe I was developing a new reaction to an interferon I'd been on for years. Once I started refusing the drug (and ignoring his lectures), the fevers finally stopped. I never could convince that neuro I was reacting to the drug, even when it happened again the next time I took it My MS Specialists have never questioned it.

Another time, a neuro kept me on Gilenya when I was in the hospital with a UTI. He had a lower wbc count cut-off than my MS Specialist, and I ended up getting a much more serious infection. Again, I ended up in the hospital for months.

For me, it's a no brainer whose advice I should follow. I just ended up in hospitals where he wasn't on staff.

Best wishes,

[tracibk]

hi! I would follow the advice of the ms specialist! Best of luck!