thought symptoms got better.. not worse w/ tx

[mommaglow]

I am 9 weeks into tx and I seem to be getting worse and worse. My neutrophil count won't even come up above 200 and now I need to start the neupogen 2 times a week. The neuop nocks me on my but for 2-3 days, I cannot even get out of bed becouse the pain is so bad, I had two days a week I was OK and able to do things- Monday and Tuesday and now that is gone becouse I have to do the Neupo Sundays also. I am starting to freak out a little. The Tx has made my RA so bad I can barely even get to the kitchen on most days I cannot even get out of bed untill after 10- this is bad becouse I have 2 small children- I do not know how I am going to do 15 more weeks

Anyone know what my odds are if I stoped the tx at 12 weeks, I have been SVR since the 3rd week- I just do not know if I can keep it up- I think some days it would be better ti have hep C- I know I am just frustrated, I could not evn get up today untill 3 from the Neupo yesterday and then tonight I had to do te interferon, and I already have chills and have started vomiting (every week the night of the shot all night) I am just so frustrated and feeling so helpless any advice

[geterdone]

Momaglow, have been reading your prior post and feel that you are genially between a rock and a hard place at this cross road in treatment. Most are past the child rearing years here going through this type of treatment and would hope that most would have compassion when question are presented relating to hepc and associated symptoms. Trying to understand the disease and the symptoms of the drugs being taken can be quite a challenge so…

Hang in there, the rolling thunder will subside when the nueop’s start coming up and they will as soon as the second shot starts kicking in. What are the intervals in which you are taking your shots? I had the same problem with Procrit when in your present time frame and sick as a dog most of the time also but started moving the Procrit shot away from the peg shot and it seemed to even out the sickness or at least made it bearable. Most here said they had no problem with the Procrit shots and the sx of it but unfortunately I did because the sx mimic those of the inf and the riba, not fun at all. Is it possible for you to move the shots apart and take them at night as opposed to during the day? Take the inf shot Friday, the first nueop shot Sunday and then the second nueop shot on Tuesday? At least the nueop will stay at a higher concentration in your system and get the neuop under control. I took the Procrit shot on Tuesday and the inf on Friday but with you having to take them 2x a week is a bit harder and know your frustration because there is no way around it at the moment. If you can, maybe try spreading them out say, INF on Friday, first neuop shot on Sunday and then the second nueop on Tuesday so that your system will have 2 days to build up the marrow production before getting hit by the next inf shot.  

jasper

[Odin999]

Not sure of your starting statistics, but UND at 3 weeks is very promising whatever they were. Worth hanging on another 15 weeks because you really have a realistic chance of succeeding. You don't want to have to go through it all over again.

I went for 14-weeks before I was advised to stop. GT1, not responding well enough, blood counts diving, sides so bad that I couldn't work, would have had to do minimum of 72-weeks with minimal chance of success. I did it pretty rough - thought the meds were killing me. I eased up a bit on myself from week 10. Things started to improve of their own accord from week 11. For some reason week 14 slammed me a bit hard, but in general my body really had started to cope better from week 12. If you get to week 12, you are half way there, things will get a bit easier.

I'll say this, if you know you were UND at 3 weeks then sounds like you are in better hands than I originally was. Hang in there. Get help from your specialist. Reach out to your friends and family.

I can't give you advice on your Neupogen, IFN, & Ribavirin dosages - but you might like to run your numbers by Dr. Dietrich and see what he says. Just an idea. Maybe tweaking things a bit might help. Dosage reduction is generally a bad thing, but I have seen some people who seem to be on higher or lower doses than they need to be. Worth asking an expert at least.

[Trinity4]

Here's a post from nency - even though she's a geno 1 and would have gone 48 wk she wasn't able to continue and the outcome was unfavorable.

nency
Member since Oct 2007  
  Apr 08, 2008 09:26PM
Hello everyone,
I would like to let you know and I hope you pray for me, because I stopped Tx after 24 weeks SOC for Type 1b ( I am 31y.o, almost normal biopsy, VL 252000 prior Tx and UND since week 8 by Heptimax! The reasons for stopping are severe side effects (transient episodes of loss of vision). I still hope for SVR no matter what! I would like to thank you all for your wonderful support and I would like to wish you all SVR and suffer free life! Without you guys all this time would be more difficult for me, Kisses!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Best regards,
Nency

, 9 hours ago
Dear all, I am back, wich means I have relapsed. Sorry, no much comments at this point---depressed...
And I hope you could help me with your point of view on using coloid silver!
I hope you all are doing well. Thank you in advance.

Nency

[Trinity4]

I just read your post and honestly I'm so tired myself right now I can't think straight enough to give you a good pep talk.  You can do it. You were UND at 3 wks - That is awesome - you're almost half way there and if you stop now you will not remain UND.  You have to go the 24 wks in order to give yourself every chance of SVR.  That's just the way it is.  No one can tell you what to do, just give advise and I'm sure everyone will agree if you can keep yourself going for another 15 wks you will look back on this and smile in your heart because you did it!!!  Weeks 8-12 were the worst for me.  Damn fatigue made me feel like I was in a constant melt down.  My ANC and platelets tanked  but I was lucky and so far haven't needed any rescues. The body adjusts to the drugs the longer we are on them.  I always say thank goodness we have rescue drugs or many could never complete tx.  Call on your friends, family, neighbors, clergy.  If you need some help ask for it.
Amazing what people will do for us if we just ask.  Keep going mommaglow - do it for yourself and your family.  You want to be around a long time to enjoy them.  Keep telling yourself it will get better - make it happen.
Trin