end of the road

[sule610]

I have been asked by my doctor to stop treatment because Iam not responding.where do I go from here?

[sunshines76]

If you can wait for the new drugs, that's great. If you feel like you'd prefer to keep fighting now, then check out this link and ask your doctor about infergen: http://www.infergen.com/healthcare.php?id=hcabout
It's not a new drug and most insurance companies approve them for those who failed initial tx. Some people report that infergen sx are much worse than those from pegintron, however, it wasn't true in my case. I wasn't tired more on infergen than on pegasys.
Good luck!

[ivgirl]

if u r only in stage 1 you might be ok to wait for the other treatment   i hear this one is murder for us  stay away from booze and fatty foods they say also i hear pot is supposed to be bad for our livers  i live in calgary  stage 3  about to start  scared  about the depression and the success  i will pray for you  take care  there is promising news about the new treatment and it is not supposed to be as hard to do

[sule610]

am genotype 1b and the bopsy i had just before commenting treatment showed stage1 to 2 liver damage. have asked if the doctor could try any other drug for now but he says  have to wait for new drugs for non reponders.Ilve n wnnpeg, canada.my are is food and nutritional sciences

[sunshines76]

You didn't respond to pegintron? Have you asked your doc about infergen? It's a much more powerful interferon. I didn't respond to pegasys, but on daily infergen became UND after 4,5 weeks. Finished my tx in August, got my first PCR a week ago, still UND. Hopefully, my 3 months post-tx PCR will show the same.

[spectda]

Do you know which genotype you are? The new meds will work well for geno 1,2 and 4. We don't know when they will be available yet, but it seems like there is a pretty good chance of 1-1.5 years. They will be used with interferon and riba as nygirl mentioned so perhaps that won't be best for you, I would want an expert opinion personally. Eventually there will be combinations of new drugs that probably won't need to be used with the ribavirin and interferon though. I would guess we are 5-7 years away from that.

Have you been seeing a hepatologist? it would be good for you to have a biopsy so you know the true condition of your liver. If you don't have a lot of damage or you have no damage you may be able to wait for new combinations of drugs that won't include what you used already since the disease generally moves very slowly. Many of us had no damage to our liver until 20-40 years after being infected. And many of us waited for years for new drugs to treat and increase the odds. There is hope.

Having seen many friends go through phd programs and I know how tough it can be without the extra stress. what is your subject?

Take care, you can get a lot of support and information here. Many people on the forum have relapsed or not responded, I don't know how much it helps but you are not alone.

if your doctor was not an experienced hepatologist, I would personally change doctors when you have the time. if you have a university teaching hospital near you or you give us a general idea where you live you may get some good advice on a doctor to see.

- Dave

[nygirl7]

I'm very sorry it does seem that you are a real non-responder and will need to wait for the new drugs - if you can even take them with the amount of problems you have experienced.  The meds will take a little while to be cleared out of your body (the ribavirin has a very very long half life) but once it is hopefully you will begin to sleep once again and your thought process will clear.

Again like the others I am very sorry this happened to you.

[sule610]

Thank you you for your concern.I was on pegetron for four month and there was no drop in the viral load.i suffered almost all known symptoms durin the treatment.It was hell for me.Irequsted my doctor to request blood works and biopsy but he has asked me to come and see him in 6months.Iam in a PhD program and wth all that is going on,dont really know what else to do.Iam not concentrating in my work,always thinking and have not been sleeping well too.do you advise,i request from my doctor to try pegassy or so.

[portann]

This is a good time for non-responders compared to just a couple of years ago. The STAT-C drugs that we hope and expect to be added to current SOC will impact so positively on those who've had to face the harsh disappointment of being non-responders.

My heart goes out to you and please let us know what happens and what happened.

Hugs and best wishes,

Susan

[spectda]

Hi-
I am very sorry to hear that you didn't respond to the treatment. Being on treatment currently I can only imagine what it is like to go through this and not respond. It's better to stop then keep taking the meds that aren't helping though.

How long did you treat for? Did you have any change in your viral load? Did you take weight based riba and which interferon did you use?

Have you had a recent biopsy? There are many new meds being developed and telaprevir and boceprevir should be out first. We hope in about a year but no one can be sure.

- Dave

[nazzareno]

I, like many others, am waiting for Telaprevir. Hang in there.
Roy