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Joined: May 04, 2006 Posts: 3395 Location: Mid-Michigan
Posted: Wed Aug 06, 2008 4:55 pm Post subject:
Probably someone has mentioned before, but what is the amount of time that people are expected to be on Copaxone after Revimmune treatment?
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Glad to know you made it back to CA ok. This is Steve from NC. I just returned the Copaxone forms this week so I guess I'll be injecting by next week. I guess the Copaxone will be bittersweet in that it'll hurt but it might prevent this stuff from coming back again.
Joined: Apr 27, 2008 Posts: 82 Location: Los Angeles, CA
Posted: Wed Aug 06, 2008 6:57 pm Post subject:
Hey Steve and Chris! How are you guys?
Chris - I'm way too pudgy to have it set at 4! LOL
I just sent updates to the docs at Hopkins. I've been doing pretty well! Returning to work today - just to see 2 clients. (no more this week, then next week, 6 I think.)
My blood counts are still low (in my opinion) - my white was ~5000 and neuts were ~3900. I was reading on Mel's blog that she was up to 10k by the time she left Baltimore! Do you know where you guys are at?
Bob - I think the estimated length of time is one year on the copaxone, but I could be wrong.
I was a quick responder to the human growth hormone. My white cell count actually shot up to 19,000 briefly! But by the time of my last IPOP appt last Thursday they were back down to 13,000. They told me that wasn't unusual though. I just had blood drawn at my family doc yesterday morning and I'll find out tomorrow what the verdict is on that. I will say that my red cells are slow to come back. They should be at least 41 and on Thursday they were at 32.
I actually ended up spending another week in the hospital due to a fever that was related to the hickman line. But to be honest, it was easier on me to do the usual IPOP stuff from the hospital room than to go back into Baltimore each day.
In terms of MS, I can't say that I feel any difference yet but I was one of the more disabled people who were there that week in terms of mobility so my gains might be limited or at best, stability. I was relieved when I spoke to Dr. Hammond yesterday though when he told me that a month out was still very early anything at this point would be a bonus.
Keri I think you're right about the year on Copaxone. That was the number of refills that was listed on the Copaxone form that we sent back over the weekend and I remember Dr. Kerr saying one year.
Keri, I also wanted to add that I'm sorry I wasn't very conversational the two times we met but I ended up getting really pounded by the Cytoxan. When you came to my room that one time, I was pretty drugged up but still very sick. When we met in the IPOP that one day, that was the first day out of the hospital for me and I was still nauseated! I ended up using the little yellow bed pan in the IPOP that day. Don't get me wrong, I'd do it all again though. I still feel very privileged to have been able to do the HiCy even though it was the toughest thing I've ever done. It was all I had left.
Oh, are you totally bald yet? I went bald the day I went back in the Hospital. I was losing hair so quickly that my mom brought a razor and shaved it. I hate it but they told me that maybe a month after it fell out that it might start growing back.
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But by the time of my last IPOP appt last Thursday they were back down to 13,000. They told me that wasn't unusual though. I just had blood drawn at my family doc yesterday morning and I'll find out tomorrow what the verdict is on that. I will say that my red cells are slow to come back. They should be at least 41 and on Thursday they were at 32.