PLEASE READ MY POST TODAY 9/2/07, I AM GOING THROUGH THE SAME THING, JOE
It's so strange but I feel grateful to my anemia in a way because I know that I won't have to wait around on a doctor to decide when or whether I can get a scrip to increase my red blood cell count. I am a huge control freak and I like the fact that I can handle that on my own without having to wait. I hadn't factored in my white blood cells though, that could prove to be somewhat problematic. I'll have to wait and see. Whatever the case, I know I'm going to feel much better once I finally get underway with treatment.
My ANC (whites count - absolutel neutrophil) dropped all the way down to 756 from around 2,000 after my first shot. I had to take a tiny reduction for the second shot with the hopes of my count going back up without having to be pulled off tx before even got started or having to do a 50% reduction. Fortunately, after shot 2 my ANC went back up to 1000 and stayed there for the remainder of my 48 weeks. I had more problems with my hemaglobin but it would go below the 10 mark so I could get the rescue drug. I was a walking zombie mos of my 48 weeks from the anemia but I made it to work 90% of the time.
Keep on keep'in on.
Mouse
Genotype 1a, Stage 3, Grade 3
Finished tx 4/13/07
Hoping for SVR 9/20/07
God. You guys are making my eyeballs bleed. My wbc's are ALREADY 3.5 before even starting treatment. My wbc count never even hits the bottom of the parameter - it's always low. I think its related to whatever causes my anemia. All of my cell lines except my platelets just seem to be a bit retarded for whatever reason. Of course, I take the epogen for my red blood cells so they are ok right now, but I've never had a reason to up my white cells so I've always just let them stay low. Umm. until NOW that is.
So when I start the combo therapy that means I not only have to worry about keeping my rbc's up, I also have to worry about it tanking my wbc's? Lovely. Just lovely. So really, I need an emergency appt with the hemo also to talk about the neupogen. Might as well get a standing scrip for it ahead of time so I don't have to waste time waiting for it when I need it.
Ok. So... Is there ANY OTHER bad news I should learn to get over or prepare for that anyone can think of? I just want all of it up front. Exactly how bad does the interferon/riba mixture make you feel. Will I be able to work at all? I work from home anyway. I'm a food commodities broker. I am a terrible patient. A big whiney baby. Just sayin'. Will all of my hair fall out? That's kind of ok. I have way too much anyway. But seriously. What do I need to prepare for. I hate delays.
My WBC and ANC dropped 75% in the first month and just like you, i got a call from my Dr. telling me I had to go to a hematologist immediately. He even made the appointment, got me directions, and called back later that day to make sure i'd gone and find out what the hemo had said.
He also had told me NOT to do peg or riba until I'd gotten bloodwork results. They were pretty low, something like1.3 and .8 but since hemo had given me neupogen my gastro told me I could continue shots.
I've been on it twice a month ever since. my counts never have gotten back up more than 50% of their original levels but at least they stopped dropping.
there seem to be a lot of different opinions about what is TOO low. the Janis and Friends site has a lot of info.
About fatigue . . .yup, got that and a host of other sx.
Wyntre
When did you start tx? How low are your wbc ( white blood cells)?
I spent my first 6 weeks of tx so fatigued that all I could do was go from the bed to the bathroom or to eat and then back to sleep. Fatigue is the number one side effect of tx. How can your doctor say it isn't related to your treatment? If you can, get another opinion. And ribavarin made me short of breath and I am used to doing lots of walking and don't smoke cigarettes.
After my first monthly lab, my doc was concerned about my low wbc and platelets. He lowered my interferon dosage. When the next week, my blood work hadn't improved, he wanted me to stop tx. This was after 5 or 6 weeks of tx.
I panicked, came here and was given the e-mail of a great heptologist. I went to him for a second opinion. He agreed that I shouldn't stop tx. I continued on the lower dosage and began neupogen. It is supposed to raise white blood cells.
Ask your doctor what he thinks of you doing neupogen. I should warn you it made me even more winded than before. Neupogen is very expensive. If there is any problem obtaining it, let me know. I have 31 unused shots of 300mg each. Feel free to e-mail me: afront2day at yahoo dot com.
BTW: Make sure you get copies of all your lab work. Insist on it.