Entry 11: Things continue to go reasonably well...

posted 2000-Jun-6

2000-June-6 : Long time since my last update. I'm halfway through week 8, my Anemia has gotten better, but now that I'm attempting to live a normal life, I'm noticing the nausea and its impact much more.

I met with my Philadelphia doctor (Dr. Santiago Muñoz) about 3 weeks ago and he seemed excited about how little the treatment was affecting me. (Partly he was, I think, infected by my exceeding good attitude having recently gotten home and been with family and friends.) He did not say, but seemed to imply, that he felt that the lack of symptoms was indicative of a good chance for full recovery from the hepatitis. While there I got blood drawn for my 4 week checkup, and a few days got the results (read to me by a secretary)--my hemoglobin level had gone from 11.1 to 11.7, a Good Thing.

Also while in the meeting, I recounted to Dr. Muñoz the story of Dr. DiBisceglie dropping my dosage under the influence of a faulty pounds-to-kilograms conversion, asking whether or not my ribavirin should return to 1200mg/week. He said that what may have been influencing the decision were recent studies showing that 800mg and even 600mg may be just as effective at treating the hepatitis as 1000mg or 1200mg, and so many doctors are now looking for excuses to drop their patients' dosage. That made me feel better, because while I was enjoying the reduced anemia, I didn't want to be endangering the chances of success by being under-medicated.

I have had repeated problems getting the Rebetron prescription filled. Briefly:

Right before I left St. Louis, I got a new prescription (since my initial one had no refills). Dr. DiBisceglie gave me a new prescription with 6 refills, which the Walgreen's said they even had in stock. Going to pick it up the next morning (right before leaving to drive to Philadelphia) we discovered that one of the 2-week boxes would expire before I had finished using it. So the Walgreen's only charged me half, and I went on my way (wondering why the box looked wrong). Halfway across the country, I discovered that the medication (now wet from leaking ice in the cooler) was a syringe and 6 vials, not my (now beloved) multi-dose pen!

Upon arriving at my parents on Saturday, I started hunting down a Walgreen's to fill the other half of the prescription with the pen, since I had to give myself a shot Sunday night. Finding one, we explained the situation (again and again) and discovered that it was my doctor's error for prescribing the incorrect medication. Further, despite it being identical except for the injection tool, we were told that 6 refills on a syringe kit is good for 0 refills of a multi-dose pen. I tracked down the GI fellow on call in St. Louis and got him to call in a new prescription. I was told that it would be in Monday morning. [I suppose I was lulled into a false sense of security by the local (in St. Louis) Walgreen's which was able to fill the prescription in 1 day with no warning.] I decided it would be OK to skip 1 day (the GI fellow on call agreed).

Monday morning I arrived to find an unhelpful pharmacist who eventually (long story) found the medication and, hearing my repeated explanations that I HAD to give myself the shot that night, repeatedly told me that she understood, but would not give me the medication because the insurance company wouldn't cover it until Wednesday. Finally a more intelligent pharmacist stepped in, called the insurance, overrode the hold, and gave me 2 weeks' worth. (So thankful was I, I decided not to quibble about her charging me the full $15 for only half the medication.)

2 weeks later I realized that I hadn't gotten a new prescription, tried using a CVS, had delay problems, and was only saved by my darling Lisa spending many many hours tracking down a pharmacy at the last minute who had some (1200mg flavor) in-stock. (Apparently it was for another patient who found they couldn't afford it.) And now I'm going to soon run out and despite my efforts today still have no prescription called in, nor a timeframe on how long it would take to order the kit once filled.

Morals of this story--Walgreen's seems better than CVS, and believe your nurse when she tells you to give the pharmacy more than a few days' notice to get the medication in.

Anyhow, other things I've learned in experimenting with the shots:

And finally, a few other things I've learned on dealing with the medication and side-effects:

Anonymous
02:41PM ET
2000-Jul-24
Please continue to post your progress, I have just started therapy, am just past my second shot, and you are helping me so much. I am frightened. How are you doing now??
Gavin Kistner
04:56PM ET
2000-Jul-25
I'm so glad this is helping you! I've just posted the next update (Entry 12) with the latest information. As always, please feel free to write me directly at gavin@refinery.com if you have any questions or comments!
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