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June 2003

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June 2003

June 7th, 2003 - I got my bloodwork back and spoke with my neurologist's nurse - not good news.  Both my AST and my ALT were 10 times the normal limit.  I have to quit the Rebif immediately to recover from the insult done to my liver.  Fortunately the liver is a very forgiving organ and should bounce back well after only a few months of being irritated by the Rebif.  The nurse did say that my neurologist wanted me to switch to Copaxone as it had no noted adverse liver reactions.  I was surprised that he wants to get me started on a new DMT (disease modifying therapy), but I'm reading in  to it and considering it.

Part of me feels like I failed this.  I know logically there was nothing I could do - either my body would tolerate it or it wouldn't (and it didn't) but it's still a hard defeat.  It was so hard for me to confront my MS recently and then to start DMT - the whole idea was hard to accept - but I did.  Now I feel like I gambled and lost.  It's going to take me a bit to get my head around this.  I was very hopeful for Rebif and really didn't have any side effects (except some reddened areas around some of the injection sites).  Hopefully Copaxone will work just as well for me without the liver insult.

One thing I am happy about is that the Copaxone's delivery is similar to Rebif - pre-filled glass syringes with an autoinjector.  I still have yet to have injected myself without the autoinjector.  It just makes things so much easier for me.  The downside is that Copaxone will mean alot more injections since it's a daily regimen, but I think I can handle that.

One thing I do hope for is that the support system for Copaxone is better than that of Rebif.  Rebif has a nice, pretty, promising web site, but when you go to sign up for MS Lifelines, you get a broken web page.  When I emailed them (several times) about it, it wasn't fixed nor did I receive the courtesy of a reply. Another disappointment was that they say that they can have a nurse to follow up with you periodically to check in on things (which I said I wanted) yet I've never heard from anyone in the almost 3 months of paying for their drug.  Hopefully Copaxone's support system will be much better.

On a side note, we are moving from Arizona to North Carolina June 16th - 20th.  I expect it will take me a couple weeks to get settled and established with a new neurologist.  I don't expect to have anything to start in terms of the Copaxone until I get settled there so for now I am treatment free resting up and tackling this big move :)  Take care!

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