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Day 4 of my campath infusion!

PostPosted: Thu Jan 08, 2009 7:17 am
by Alli
I'm on day 4 and it's going MUCH better than expected. I was diagnosed in Sept 08 and started campath off-label Jan 5, 2009. Only minor side effect was hives, which goes away with benadryl, and other antihistimines. no major aches, pains other than some tiredness and aches day 1. Each day takes about 5 hours in the infusion area. I am very hopeful for the future and thrilled i was able to get infusions. no more shots! and the hope of progression being off the table.
:D

PostPosted: Thu Jan 08, 2009 8:06 am
by patientx
Alli,

I'm curious - where did you find a doctor to prescribe it off-label?

Also, you mentioned no more shots. Were you already trying one of the injectables, or is the Campath your first treatment?

PostPosted: Thu Jan 08, 2009 6:08 pm
by CureOrBust
Good to hear its going well for you so far, and all the best for the future. Please keep us updated.

PostPosted: Fri Jan 09, 2009 6:28 am
by Alli
I started copaxone in Sept 08. Then, after reading the reports on Campath published 10-08, my husband and I prayed for some answers! Everything I read made it clear that campath has the best chance of working early in the disease, as much of the disabling progression is caused by early inflammation and nerve damage (even before the damage appears as a lesion on MRI). I decided that I would search for a neurologist who would be willing to prescribe off-label. My treating neuro was not willing (she's very conservative). I found a doctor who is involved in clinical trials, and was willing to prescribe on an off-label compassionate basis. He didn't exactly recommend the campath (tried to talk me out of it due to risks), but understood why I would want to be infused this early in my disease. He sent the order to an oncology/infusion center, which basically acted as the pharmacist and administrator. It seems miraculous to me that it all fell into place so quickly. I guess we were very insistent that we would take this route, even if we had to go overseas.

PostPosted: Mon Jan 12, 2009 3:03 pm
by freiguy
Alli,
Good to here things are well. I got my first infusions in July 2008 and so far everything is going well. I wish you the best.