Slow response to treatment

[christinaf28]

Hi my name is Christina and I have been on my 20 week of treatment with the interferon and the daily pills .. My nurse has told me that is working they couldn't measure the virus it was almost gone at the 14 weeks blood test but she told me that people who responded slow at the fourth week blood test , even though it's working I may get cured I may not ... And I will only know the end result by beginning of 2013 .. This is a long wait to know whether has worked .. I was getting stronger because I have put weight on and because the thought of getting cured now I mislead this information stupid me and iam so disappointed , negative the lot .. Iam trying also quit smoking cigarettes and pot too .. As the latter helps me eat and I can say Iam struggling with everything right now .. No many people know iam on treatment either .. Would please give me so advice . Some statistics something to go I will appreciated lots thanks

[Advocate1955]

Even though it may be scary and overwhelming to ask questions and get information, ultimately it is empowering.  It gives you the information you need to make decisions about your health and your treatment. I agree with the others above, it is best not to stop treatment for a week if at all possible.  It would be better to ask for medication that will help increase your white blood cell count and neutrophils (Neupogen).  It would be great if you could ask for copies of all of your labwork before and during your treatment and start a file so that you can be knowledgeable about your progress.  Hang in there.
Advocate1955

[desrt]

My understanding is that the PIs are not offered to patients on their first tx attempt in the UK. It may be that you've had a slow enough response that you could make a good arguement for adding a PI at this point. One of the protease inhibitors actually has a lead in time of straight Peg/riba, and though that lead in is generally only 4 weeks, I think this would be the one I'd pick if I were in your place. This is an 'off-label' idea with nothing in the way of studies to back it up, but I think it would beat starting from scratch.
As for smoking, a few studies have actually shown improved cure rates with pot smoking (probably due to better patient compliance with taking their meds - just don't space them out :-) Tobacco smoke is going to interfere with red cells ability to carry oxygen. Get off it if you can.
Good luck.

[Proactive]

I believe in the UK Incivek is called Incivo.
Best of luck, pro

http://www.hepctrust.org.uk/

[hrsepwrguy]

PI = protease inhibitor = Incivek or Victrelis which are the 2 new drugs approved for use on GT 1 patients by FDA in may, I believe they are available in your part of the world as well but from what I have read they won't presribe until you have failed on the Inf/riba treatment first. In the US they are prescribing them for treatment naive patients but not in the UK, this is just what I have read you may want to look into it futher in your country as I really am not familiar with your health care system.

[christinaf28]

What is PI ? Would you mind explain it to me please ?? Thank u so much

[orphanedhawk]

I have the same side effect of low white blood cells, though actually, it the absolute neutrophil count ( anc) that my doctor looks at. When its too low, they give me a medicine called neupogen instead of lowering my inteferon.
I've never heard of anyone just stopping treatment for one week, and starting again.

There is a forum in the U.K. called hepCnomads, someone there may have experience with dealing with these things in London.

Good luck,
OH

[christinaf28]

Thanks for ur response .. I understand what u saying now .. And I can't help but to feel low with the news ..what I have been doing with this disease is to pretend I didn't have it for almost 20 years I have this and I've got books I have Internet I have you guys .. But still didn't want to research it cause the less I know I think less I have to worry about and get upset .. How many days it took to read ur responses .. Cause iam scare to found out .. But I know I have to ..and more often .. I will find out everything u guys asked me as soon as possible .. Thank you and take care !!

[christinaf28]

Not on my own doing this .. I was so scared to start this treatment ...

[christinaf28]

Thank you so much for ur comments , I apreciaret it a lot .. Genotype is 1 ..and rivabirin and interferon .. I started the treatment on the 1 of august . Genotype i have to check cause I thought I knew but I don't for sure ..,my hair is completely falling out .. I am going to have to shave it cause it's really getting me down .. I didn't know u could continue to 72 weeks .. My white cells are low .. Once they got too low I have to stop the treatment for a week and started on half the dose !! Now they are from  30 to 80 and seem stable .. Hemoglobin it's been 10 to 11 ,, Thanks for ur help I will check thouse blood test prior treatment .. My nurse she is very good .. But she don't want me to know too much cause she thinks I easily get depress so I have been pushing for information from her .. But she does want me to relax and think iam going to get cured .. I have hep c since I was 18 Iam 37 now thanks for ur support .. It's very comforting to know that iam

[curiouslady1]

nygirl is certainly correct in all she says and you definitely have to stick with this.   This is not like treating the flu where you take antibiotics for 10 days and then you are done.  Maybe some day it will be like that but not now.  Stay on our site and many people can support you providing information and solace while you deal with this experience.  It sounds like your attempts to help yourself have really paid off so far.  Keep going.  People can help you more in your journey and understanding if you find out the information they ask for.  Good luck!

[nygirl7]

PS If you are positive after week 12 on regular old treatment but you are negative before week 24 you can extend to week 72 as many of us did.  If you are on a PI and are still positive I would rethink the equation and perhaps try again another time.

Are you on a trial? Do you know the answer to any of these questions or can you call your nurse and ask?

[nygirl7]

I'm sorry but just because you are UND does not mean you are SVR nor that you have been on tx long enough for it to have done anything to help regress liver damage.   UND is not SVR and if you have low level viremia it can still be causing damage to your liver while you appear to be UND.

Almost gone at week 14 is not UND. It sounds to me as if they did not use a sensitive enough test to measure the VL.

[curiouslady1]

It sounds like you are doing a lot of good for yourself and your liver.  Likely what is happening now is that you are clearing your liver of virus and the inflammation is subsiding.  It is a good thing.  Seems that you are feeling well too.  That is wonderful.  Many of us will wait for a long time, at least many months,  to know if we are "cured".  But we can know pretty soon if we are UNDETECTABLE.  That is the key word to ask your nurse.  If you are doing an experiment, they may not tell you anything for a long time but it doesn't seem like that from what you write.  Other than that I agree with nygirl and flycyclist.  

[flcyclist]

Along with nygirl's questions, can you tell us your PCR results, pre-treatment, 4 wk, 12 wk, etc.?  It would help to know how your viral load is responding to trt.  If you haven't done so, you should request copies of all your tests to file for your own reference.    Hope all else is going well for you.

[nygirl7]

Also what genotype are you?

[nygirl7]

So you are just on interferon and ribavirin? Or are you on a PI too?

That is the first question we'd need to ask.