here is what happened

"I wish that I had known about this sooner".

Those were the words spoken today by the MS Clinic nurse when I told her about my injection troubles.

She asked me a number of questions about technique, prep, follow-up, and location, and concluded that I have "more than done my penance" with this drug.

I can't get in to see my doctor any earlier than October 22, but I can stop the drug immediately. Those words, "you can stop it right now" sent a whole jumbled up wave of emotions through me.

The nurse said that while the drug Copaxone boasts no side effects, the pain is not uncommon, however, it does usually go away...obviously not in my case.

So now I may have to make some decisions. I'm not sure why I am using the word "may". Here is the situation, as outlined by the nurse (the doctor may think differently):

I have the option of Tsyrabi - it is still not covered by Pharmacare (Manitoba Health) but some drug plans do cover it. I'm not sure if my plan will or not. If my plan does cover it, it will be 80%...and I can't afford the rest. It is the drug administered once a month by an infusion...I have heard good things about it..."night and day" daily living when compared to the other drugs.

We have the option of re-visiting the beta-interferons which I was not allowed to take from the beginning because of my elevated liver enzymes. So if my liver enzymes are elevated for what is considered a "benign" reason (which I'm sure they are...considering the liver doctor never followed up with me after the tests and ultrasounds) - then I may be able to take them. However, beta-interferons can have an affect on the liver (I would have monthly blood tests to monitor my liver) it depends on how high they are if the doctor wants to take that risk.

I have "sacrificed my quality of life for too long" why am I afraid to stop the Copaxone until I have something else in place? There is no need for a rest in between drugs - unless one of the drugs is Tsyrabi.

Hesitantly relieved,



Mom said...
October 2, 2007 at 8:11 a.m.

Call it selfishness but I am relieved. No hesitation.

I choose to believe that 3 weeks without any drug will do no harm.

Praying & crossing fingers at the same time,

Big hug, Your Mom

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