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April 2003

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April 2003

Saturday April 19th, 2003 - Currently I'm up to the 44 microgram (.5 ml) injections of Rebif.  When I switched to the 22 mcg there was a bit more discomfort due to the slightly increased volume but not much.  The 44 mcg stings a bit more than the 22 mcg since it's the same volume - just a higher concentration of the drug.  The needle stick doesn't really hurt much at all.  In fact, if I get lucky and chose the perfect injection site - it doesn't hurt at all.  Conversely, I've picked a couple of sites that really stung when the drug went into the skin.  Even at it's "worst" it only stings for a few seconds.  As I sit there with the needle in and count to 10 - the pain ebbs as the drug spreads out.  

I've had mild flu-like symptoms - mostly on the first day of the increased dosage.  I pre-treat with Tylenol and that helps, but for the most past I'm spared the symptoms.  I've only had one injection site area that reacted - just some mild redness where the injection dissipated into the skin - no pain, no swelling, no skin thickening - just a bit red.  I'm still amazed that I'm able to inject myself (I can't even look when I get a shot or blood drawn).  

The Rebiject autoinjector really makes it very easy - don't have to see the injection take place and it spares me the step of sticking my skin and them depressing the plunger to administer the drug.  

Otherwise I'm doing pretty well.  Still get fatigued if I overdo things, have some pretty annoying facial tics that come up when I'm tired or stressed (this is new for me - never had but the occasional short lived tic.  These guys last for days!)  My husband jokes that it's my neurons trying to reconnect in my brain :) 

April 26th, 2003 - About 4-5 weeks after I started the Rebif injections, the neurologist drew labs to check my red blood cells, white blood cells and liver function.  A week after the labs were drawn, I get a phone call from the nurse.  Two of my liver enzymes are high  - AST and ALT (GPT) (twice and four times normal respectively).  I'm set up for an ultrasound of the liver, more bloodwork and a consult with a GI guy (for an hepatic workup).  I'm also back down to the lower dosage of 44 mcg per injection.  My "liver" appointments are April 6 & 7th.  

It seems that asymptomatic elevations of liver enzymes were common in the clinical trials of Rebif and that adjusting the dose can often solve the problem BUT they just want to make sure they aren't missing something else that may be causing the liver enzyme elevation.  

What does this mean for me?  Well for now we don't know for sure, but it could mean that we have increase the dosage more slowly to develop tolerance, it may mean I can't tolerate the higher dosage of 44 mcg and need to stay at 22 mcg or it could mean I can't tolerate Rebif at all.  We shall see....

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