Anyone else withdrawn from Hep C Treatment with Incivek?

[Mum1253]

I was diagnosed with Hep C Geno type 1 three months ago.  Only made it through 3 1/2 weeks of triple therapy with Incivek because of grueling side effects.  Has this happened to anyone else?  Feeling whimpy and alone.  

[his3707]

hah hahah  how did that happen.  I know what an hour glass looks like dont I?  Wonder what happened to MuM?

[Dee1956]

ARGGH Old post so sorry

[Dee1956]

Oh gosh, you are so right.  I am so sorry. I guess I was trying to be supportive and just put my foot in my mouth.
That is me, heart on my sleeve, foot in mouth.

There are new drugs in the works that look very promising.

His has a good point about staying on the SOC

[his3707]

How long have you been off treatment?  have you considered carrying on without the inciveck and staying on the riba and interferon until 4 weeks and seeing if you are detected or not?  

[doncheery]

I lasted three weeks. Please don't feel bad. It was not for lack of courage or effort of that I am sure. This is all really toxic stuff and every body reacts differently. Everybody. Never quit. Be in the moment. Good Luck

[streamline569]

I had to use a lot of helper drugs, which I'm still working on getting off. If not for that I would not have been able to continue and clear the virus, but I also have to say I was fortune not to have had any of the horrible anemia, that was able to be maintained, or stomach upsets, even the rash wasn't that bad for me. It sure is a drug treatment that is an individual experience. Personally, I think if it gets that bad, you may have been better off stopping. Hopefully you be able to take the new drugs with little to no side effects.The last 10 days were horrible for me, but thanks to my doctor, he got me through. I

[zako7]

Mum, folks here have said it all. That is why this forum is very important to treatment. You read about people experience before you start and you see the kind of support folks here give to each other, then you know the reality of treatment and prepare your mind towards that so nothing will be a surprise.
This treatment is hard. But you have to elevate your mind over your body. Know that the sx are temporar and keep your mind on the ball which is clearing the virus and svr. This treatment is not a piece of cake. I am a very strong physical man but my second interferon injection made me forget the way to my house I lived for 5 years. Folks here support me every step on the way. I advise you should be active on the forum and talk to your doctor to get back to treatment.

[nan535]

So sorry you weren't able to stay on treatment. You are not alone. My husband had Stage 4 Cirrhosis (decompensated) due to Hep C infection over 30 years ago.  His hepatologist decided to try the triple treatment with Incivkel (though most drs wouldn't).  My husband wanted to quit after only one week because of the side effects but we spoke to the doctor and he told us iif he quit he would not be able to go back on. He was able to stick it out for another 4 weeks but then had to quit because he became severely anemic and needed several blood transfusions. His hepatic encephalopathy also grew worse.  We were so upset and disappointed because his week 4 blood work came back <43  "unquantifiable". The doctor told us the virus would likely return quickly. But the story doesn't end there.
   HCV blood test after blood test for 8 months the results came back "unquantifiable"   He finally had a liver transplant on June 3 and as expected, the virus has finally now returned. But at least he got the  benefit of  the treatment for the 8 months he waited for the transplant.

Have you had a follow-up HCV test?  Did the time you were on the treatment have any impact on your viral load? Based on my husband's experience,  I don't believe it was a total loss for you.

Hang in there. Try to stay positive.  Continue to visit this forum as you will find the support and information you need here.

Wishing you the best.
Nan

[dontworry_behappy1]

Dee, or anyone correct me if I wrong......if you took Incivek.... you
can't then take Victrellis later.   That was my understanding anyway.  

[Dee1956]

Please do not feel wimpy or alone, there are many wonderful people on here who can help.
It is not your fault that your body could not handle the Incivek, it is a hard drug for some to take.  There are others who could only take it 10 weeks and had to stop
I hope you have little damage and can wait for the all oral drugs or perhaps you can take a break and try the Victrellis in 6 months or so
My best to you
Dee  

[JasmineT]

I am afraid I have not seen anyone say they stopped so early either.  I expect this is the same for others or you would have more responses.   The meds can be harsh.  It is unfortunate you could not continue.  It's not an easy road.  Hopefully the new drugs will come out and you can try again with less sx.  Although very few may have stopped so early, you are not alone.  This forum is filled with heppers who all have unique circumstances in their lives.  You tried, it didn't work out for you, enjoy life and watch for the next opportunity.  You are not alone and will always find support here.  Best wishes.

[pooh55811]

I am sorry you had to stop treatment due to grueling side effects.

As long as you are on this forum, you are not alone. People here will support you. There are several very knowledgeable forum members and there is a wealth of information on the forum.

To be honest, I cannot recall anyone posting that they had quit triple med treatment as early as 3.5 weeks except maybe 1 person who quit after 2 weeks but, after visiting the forum, restarted the meds. (She was off the meds only a very, very short time and then decided to continue with treatment.)

I do not know which side effects you had. Some of them can be pretty severe. No one is going to judge you.

I did find that for most of the severe side effects there are prescription medications to combat/alleviate them. Some doctors/many doctors are clueless about the side effects and treatment of the side effects so a person has to be very assertive sometimes in order to get the correct medications and the correct dosages to treat the side effects.

I hope you can retreat in the future with some of the new meds now in trial.