Last 30 days on tx :)

[sunshines76]

Ok, my daily infergen tx is almost over, only 1 month left. I am doing great, feeling great. Now, I wonder is there anything I should be aware of while finishing the treatment? We all have bunch of questions before we start tx, but now when I am almost there (and hopefully SVR is in my nearest future too), should I know something that would help me clean up my body from all the meds? What should I ask my doctor about? Something to watch out for?

Also, from what I understand, I will have PCR and TSH/CBC tests done right after tx and then in 3 and 6 months. Should I ask for some other tests too?

Thank you in advance! This forum has been a blessing. I remember how scared I was to start tx, but this forum helped me tremendously, and the whole experience has been pretty good :)

[spectda]

Thanks sunshine, You seem to have a really good attitude about your tx experience.
wishing you the best - Dave

[sunshines76]

I don't remember now the exact number of my VL when I switched to infergen, but it was something around 200,000, I think. I was still detectable on week 16 of pegasys. First 4 weeks on pegasys were good, it was going down (although I didn't get that UND on pegasys), and around week 12-13 it started climbing up again.

[spectda]

I am amazed that you got through the infergen without too many sides. The stuff sound pretty nasty from what i've read about it. You obviously have a strong constitution handling the infergen and low hgb and still being able to say you have plenty of energy!  Do you mind my asking where you vl was when you switched to the infergen?
I hope you continue to svr, you certainly have worked for it.
Take Care - Dave

[sunshines76]

Hi Debbie! Just think of your 21 weeks left as 7 increments of 3 weeks. You won't even notice how soon they will fly by :) I'll tell you this though: the closer you are to the end of tx, the harder it is to keep this discipline and keep taking medications on time. But you have to do what you have to do, right?

[sunshines76]

I think everyone has different experiences with tx. I did feel tired, but it was not as bad as I thought it would be. I hope you will have a smooth tx, too, with no major sx. I do feel like I need to check my eyes soon - for the last 4 weeks I noticed my vision got worse.
To answer your questions: My starting VL was 1,060,000. I started tx with weekly pegasys shots and 1200 riba daily in June 2009. By September it became clear that pegasys didn't work for me - my viral load started going back up around week 12. By week 16 we decided to switch to daily infergen, without a break.
By week 5 on daily infergen (15 mcg) and 1200 riba I became UND. My doc was impressed, he didn't expect this result. He said that in his experience very few pegasys non-responders with geno 1b responded to infergen.
I had my riba adjusted in January this year - when my hemoglobin dropped below 8. I was told to stop taking riba (but continue with infergen) for a week. I instead kept taking only 400 of riba for that week. Then when my CBC got better, I increased riba dose to 800 and in February went back to full 1200. In May they adjusted my dose down to 1000, as I lost quite a lot of weight by then. My hemoglobin stayed around 9 all this time, no procrit, no blood transfusions. I do feel ok though - tired but not totally wiped out, still have plenty of energy, no major side effects: just some moderate hair shedding, some drop in vision, and occasionally some dry skin rash. I am sure my hair and skin will improve after tx, just hope that my vision comes back too.
Good luck with your tx! I wish you to get that UND soon!

[Deb9991]

Congratulations Sunshine!  It must be a wonderful feeling to only have one month left to go. I start my 3rd week of treatment tomorrow, and then only 21 more weeks left (I've started the countdown a little early).  When I hear people are nearing the end of tx, I'm so excited for them.  It is a long haul, but one well worth it.

Debbie

[sunshines76]

Thank you, Trinity!

[pennylanem]

Congrats on being almost there! I am on week 3 of daily infergen and other than tiredness I don't seem to have any other sx yet.as far as questions the only thing that comes to mind is whther to have a final eye exam? I know with peg my eyes got worse towards the end...
I do have questios for you I hope you can answer. How many weeks did you do? What is your riba dosing? Did you have any dosage adjustments?when did you go und? What was your starting vl? What's your geno? I know everyone is different but I just want to get an idea as to what may be in store for me. Hopefully like you I'll be UND soon! Thanks in advance and congrats on reaching the home stretch!

[Diane12855]

I have read that it can take up to 6 months to get all of the meds out of your system. Some people still have sx until then, so don't get down if you feel rotten for a while. I have also read that a few people are sure that exercise helped them get back to normal faster so if you have no health issues preventing it, that would be something to think about. I'm not done yet, but it is in my plan.

Hope things go smoothly for you,
Diane

[Trinity4]

Good Luck sunshine.  Looks like you've got all the bases covered for a good post tx recovery.  You're a tough nut to have gotten through treatment with Infergen.  I admire your tenacity.

You will gradually start feeling better and your energy level will increase along with  blood values becoming stable.  It takes a little while but you'll get there.

Good Luck, hoping to see that SVR post,
Trinity