HALT-C Journal
February 2001


February 5 ~ Well, I still haven't gotten my PCR back so I have no clue where I started, but Susan has told me I'll get it soon, so I won't worry about it. I'm starting to feel even more crabby and irritated. My liver enzymes aren't dropping, and even though I know in my mind that they really don't mean alot, I also know that if they are elevated, damage is occuring. I was truly hoping that they would go into the normal range while on this treatment. It would give me incentive to continue. At this point, I'm just plugging along. My hair is starting to fall out in bigger amounts. Even running my fingers through it will pull out 4 or 5 strands at a time. It's a vanity thing, but it's a depressing one too. I'm itching something terrible. The main spots are behind my knees and my lower legs. I'm using Gold Bond Medicated Anti-Itch Cream now and it's helping alot. It's funny, but I itch the most at night. My skin is really becoming dry too. It's naturally dry, but now it's much worse. At month 3 I see alot of the same side effects beginning to show up. My appetite is still ok, but everything has that tinny taste. The diarrhea comes and goes, and I'm still not losing weight!

February 12 ~ I'm feeling really lousy these days. Like I could implode at any second. I want to quit the study. I've lost all faith in the drugs working for me and I'm just not wanting to continue this. I want my life back. I've been doing treatment since March 98 with only a 10 month break in between. I've done all the interferons that are out there and haven't responded to a single one. My headaches are back and just as bad, I'm losing control of my temper and emotions constantly. I sent a letter to Susan at USC telling her I want to stop treatment. I don't know if they understand what it is like to do this stuff for such a long time and see no improvement. I can't see myself doing this for another 3 years either. I am snapping at Larry and Erika constantly, and even yelling at the poor puppies. I'm lethargic, and can't remember what I did 5 minutes ago. The "brain fog" is worse than it has ever been and is becoming extremely frustrating. My eyes are blurrier than ever too. I'm having pain in my liver quite alot now. My legs are so tough that I can hardly get that little needle into them. When I do get it in, I bruise for at least a month. Quality of life is becoming more important to me than quantity at this point. I can't see living like this....just to be living. I'm unhappy, no fun, grouchy, unsure of myself, and I don't want to live my life this way. I've never been like this and I don't like it. I have an appointment on the 20th to see Susan, Dr. Lindsay, and the psych doc and I know they are going to try to talk me into sticking with it. I feel guilty for dropping out of a study, because I know how important it is for us to be guinea pigs for this stuff. I also know that Genotype 1 is not a good responder, and I've now come to the conclusion that interferon is not the drug for Genotype 1. I'm worried about what my family will think if I quit too. I know Larry and Erika will understand because they get the brunt of these mood swings, but I'm afraid the rest of my family will think I'm giving up...and that isn't what I am doing. I'm just trying to get my life back.
    We are planning to move in the next 4 months and with trying to get this house ready to sell, pack everything to move, get all the paperwork done that is necessary, and help Erika and the baby move, the treatment is just dragging me down. I don't have the energy to pack a box! I have to sit down and rest after taping a box up to fill it. Nothing like a load of stress to help matters!

February 19~ Well, I was right!! They talked me into taking a week off from the interferon, staying on the Riba. I will go back in on the 26th and give them a final decision. They say that the Peg dosage we are using (1ml) is high and they don't even know what the right dosage is. Many others on this study have had to lower their dosage as well. I don't think that is going to make any difference to me. The psych doc wanted to put me on Ritilin!! Just what I need is a stimulant. She upped my Zoloft by 25 mg but I have to get my regular doctor to do the prescription. I took everything in with me to the appointment...the bag, the diary book they gave us, the needles, the Sharp's Container, and the drugs. I came out with the Riba. I did finally get my PCR's. Talk about depressing! I've never seen my level so high. Susan had me stop the Darvocet for my headaches and try Aleve, but Dr. Lindsay said I could go back to using the Darvocet. The Aleve didn't do a thing for them. I haven't changed my mind, though. I want to have some semblance of normalty back in my life, and I can't have that and be on treatment too.
    Dr. Lindsay did paint kind of a bleak picture for Genotype 1 though. She said she doesn't see much in the way of new treatments coming out in the next 5 years at all, and nothing new to help Genotype 1 because no research is being done on that specific genotype. I know I am in advanced liver disease, and am moving toward cirrhosis, but I still can't see continuing this treatment. The toxicity level in my system is on overload from these drugs. Larry called me a chicken when I got home! So....I will take their Riba until the 26th, but I'm still going to stop. Heck, if I go into cirrhosis and end stage, then so be it. I want to enjoy my life until that point.
    I stopped the Riba on the 22nd. I decided that if I am not going to do the study, why continue to take the pills. I haven't told them at USC yet, but have an appt on the 26th and will tell them then.

February 26 ~ I'm starting to feel a bit better this week. We were having some real bad rains so I didn't make the appt at USC. It's been rescheduled until the 7th of March. I still didn't tell Susan that I stopped the pills. I should so that I don't have to go back down to see them. I'm kind of afraid they will talk me into starting it up again. I'm feeling good about my decision to stop, and even though I know there aren't any new treatments in the near future, I believe I have made the right choice.
    I already feel more energetic and have gotten a lot done in the way of getting this house ready to sell. I've gotten so much stuff packed up in boxes. Even this room is empty, and it hasn't been this clean since we moved in here 5 years ago! I'm looking forward to feeling real good when we go to DC next month. It will be the first time I've gone without being on interferon. Mom is coming with us and her and I will have a 10 day vacation. She has never been, and I can't wait to take her all over to see everything. I know now it will be a real good trip for both of us, and productive for HCV Awareness as well.
    I had some labs done on March 1 to find out where I stand with everything. We are checking PCR, thyroid, AFP, you name it! As soon as those results come in, I'll post them on the lab link below. I don't plan to even think about another biopsy until 2003. I've had enough of those too for awhile. It's time now to get my body back to it's normal self, whatever that is, and enjoy life!!!
 
 

 MARCH 2001 UPDATE!


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