I wasn't going to continue with a journal but I received an email from the sweetest lady asking me not to stop so here we go. They have already begun Phase II studies on Interlukin-10 although it is a very small study and only the first one. It looks like this will be my next option - about 2-4 years from now! Pegelated (Schering's product) is not an option for me as I already tried IntronA alone and Rebetron with no response from either. Pegelated is just IntronA with a time release factor added in. It is NOT a newly manufactured form of Interferon. Roche also has a Pegelated Interferon but it hasn't been submitted to the FDA for approval yet. If you are looking into it, talk it over in detail with your doctor. If you did not respond to the combo, you won't respond to Pegelated Interferon.
 

******UPDATE******
On February 17, 2000, the FDA anounced that it is refusing to place Schering-Plough's product Pegelated Intron on the "Fast Track" for approval. It was submitted to the FDA in December 99. The Fast Track would have had an approval time of 6 months or less. It will now be processed and possibly approved by the end of 2000, or the beginning of 2001.
 

I was OK with the doctor taking me off the Infergen...or so I thought. I did not want a PCR because if it showed undetected it would have made no difference. I was finished. Kaput! No More! My Dr. was so concerned about my WBC and Platelets dropping so dangerously low that he wouldn't have allowed me to continue, even if I begged. I know in my heart of hearts he is right. He is such a great doctor. I don't know how many Dr's actually allow the patient to fiddle with the dosage as much as I did or allow the patient to stay on a drug for as long as I did the Infergen. Daily was my idea. I just KNEW I could make it. I probably could have, but it may have been the last thing I ever did!  You know, we were all raised being told to take our medicine. It will make us better. What a shock to find out that that isn't always the case.

The only "withdrawals" I seem to have encountered so far are the terrible headaches that even the darvocet doesn't help and my old insomnia is back. It is 3 AM California time as I write this. I sleep for 4-5 hours then wake up. It's been hard to adjust to that with me babysitting Arianna all day. Thank goodness she naps so I can too! The headache lasted about 2 weeks then was gone. Now I get them only once in a while.

About 10 days after stopping I started thinking about not doing treatment anymore. It hit me that I had gone as far as I could go treatment-wise. There IS no more out there for me right now.  What a blow THAT was! I had a great ole pitty~party about that. It only lasted a day, though. That's what I like about those kinds of parties. They don't last long for me.  I also notice the pain in my right side again. I'm having it quite a bit, but then, I always had that before treatment!

I'm eating again! I still haven't gained any weight back but that's ok with me. Going from a size 14 to a size 6 has been great! I have the feeling I will stay down below or at 120 now. I've wanted to lose weight for so long, and thanks to Interferon I did, so something good did come out of the last 2 years!

Actually I think a lot of good things have come from all of this. It has changed my life but definitely for the better. I appreciate life a lot more now. The things that used to really upset me, just don't anymore. Heck, the little things aren't worth stewing about. I am so blessed and now I realize that. I've got that beautiful little granddaughter, who lights up my life everyday. I've got a wonderful daughter, who has been a huge help to me. This has brought us so much closer together. My family supports me and I don't think they even know how much that means to me. Larry has become more understanding as well. He still has his moments but that is a "man" thing I think! I've come to realize that family and friends are so very important. I can't imagine what it is like for those people whose families and friends have deserted them in their time of need and my heart goes out to them.

I've been busy this month. I'm raising money to send 3 people from our support group to HFI's Annual National Congress in Washington DC in March. I was able to raise $1,855 and that has paid for our airline tickets, (with the help of priceline.com), our hotel rooms, and registration for the conference. I'm real excited about going to this one, as I am not on treatment this time, and they will be talking more about the Interlukin and other anti-fibrotics they are working on. I think that is going to be the next wave of treatments - treat the fibrosis more than the virus itself. It sounds like a logical step.

My biopsy should be sometime within the next month. As soon as the insurance gives it's okie~dokie, we will be doing a post~treatment check to see if the past 2 years made a difference. I'm not so sure I am convinced that interferon actually reverses fibrosis, but I do think it can stop the progression to cirrhosis. If we have slowed it down at all I think I will be happy with that. I've done a lot of thinking about transplantation, and I just don't know if that is an option I want to explore. At least not in the near future!

My headaches have all but disappeared now. I very rarely need to take a darvocet for them. I am starting to get tired out in the afternoons again, so I'll have to go back to laying down and resting. My appetite is doing pretty good too, but no weight gain as of yet. My skin is still pretty dry, but it was always dry so that could be from anything. I did notice that I have no sores in my mouth anymore and I don't itch like I did, especially the way I did while on the combo.

By the end of February, I was feeling much better. My hair still seems to be falling out, but not like before. The headaches are gone. The taste I had lost in my mouth is back and food is appealing again. I still don't have alot of energy and am extremely tired by the afternoon. I haven't noticed any difference in my concentration levels or memory though. I was hoping that would improve, but it hasn't as of yet. It even feels as though it is slowly getting worse. Some days are better than others. I'm still waiting to hear from the doctor to set up the biopsy.