rituxan/ofatumumab

[Guest guest]

I'm very curious why the dosage of this comparison has been changed

from the 2000mg of ofatumumab for 8 weeks (well, 7 really, the first

is only 300) and then every month for 4 months which adds up to quite

a bit more of O than in the clinical trial.

I've been on O for the 8 weeks and next week will start the monthly

for 4 weeks but I have serious side effects of neuropathy and extreme

fatigue. I called Glaxo and they said no side effect in trial of PN.

Of course the fatigue is one of the first symptoms. But could the

extremeness of the fatigue be because the dose is so high? I then

called the FDA because Glaxco said they didn't have follow-up side

effects after the trial was over. I think that is probably not true,

but couldn " t get any info from them and they said to try the FDA. FDA

of course never called me back.

I'm extremely concerned about continuing the O treatments because of

the neuropathy. Will it go away or will it not? If I stop now will

this help it to go away or at least not progress. No one knows. I

had an email from one person who also had PN but my doctor cannot

understand why a CD-20 targeting agent could cause PN. so i'm left

with not knowing what to do. I think these trials and follow-ups

really can be very sloppy with side effects. If my doctor refuses to

believe this is an O side effect and then does not report it, it will

obviously not appear anywhere as a side effect and then he will have

more reason to not believe it is one. I seriously think that side

effects need to be taken more seriously, lots of seriously here! For

those of us going through them, we need to know what happens down the

road. Where is the followup? Carol