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Avatar universal

Triple Therapy w/peginterferon alfa-2b, ribavirin & VICTRELIS info & side effects

Hi there. My name is Ashley and I am 28 yrs old. I was diagnosed with Hep C (geno:1b), AND cirrhosis of the liver when I was 19. My mom passed it to me at birth not knowing she even had it. I have been waiting to start trtmnt for a long time! Problem was, nobody would treat me unless I was on a transplant list b/c of the Cirrhosis. According to several dr's that I've seen in my area, since I already have cirrhosis, I run a higher risk of the trtmnt worsening my condition causing me 2 need a transplant stat. Anyhow! So after a week of procedures, bloodwork, tests etc..I was approved to be put on the transplant list at the Mayo hospital. About 2 yrs ago the gov. of Az decided liver transplants would not be covered thru state ins. anymore, leaving not only myself but many many others to be taken off of the liver transplant list. Fast Forward to- Now they have the trip. therapy and my dr is putting me on Peginterferon alfa-2b/Ribavirin/Victrelis and I will start in the next 2-4 weeks. I'm scared and excited! I really wanted to ask what kind of side effects everyone(not sure how many people are on Victrelis instead of Incivek) is having so I can prepare myself. Also if there is anything anyone would reccommend I do b4, during or after treatment, I would greatly appreciate any tips or advice:) Thank you!!
16 Responses
Avatar universal
Hi ashley and welcome to the forum, its great that your going to treat and maybe rid yourself of Hep-C. I also have cirrhosis, and treated with Victrelis and now I am cured. For me the worst side effect was the anemia so I would talk with your doctor right off about how he will treat it. Hopefully he's not afraid to use procrit. These meds run you down after a while so be ready to pace yourself, make sure you drink plenty of water and just take it easy when you need to.

Being your cirrhotic I would guess your platelets run low, that can also be a problem during treatment as the interferon will drag them even lower. Find out your doctors comfort point on how low he willing to let them get.

The best adivce is just do it, you should be looking at 48 weeks being cirrhotic, before you know it they will be over with.... Wishing you the best going forward.
446474 tn?1446351282
Vertical transmission of hepatitis C from an infected mother to her child occurs in less than 10% of pregnancies. The is a tough break to have got it from your mother.

I'll let others comment on typical side effects of treatment.

So you are on the transplant list at Mayo correct?

Your hepatologist at Mayo is going to treat you? Correct?
FYI: I've never heard of cirrhosis in less than 20 years and being in someone so young. Is hepatitis C the only cause of all your liver disease/cirrhosis?

What do I recommend? Talking to your doctor.
You should be asking your hepatologist what to expects not only with side effects but "Adverse Events" that is where the serious issues are for you as Adverse Events can be life threatening in a person with cirrhosis.  As the doctors said treatment can cause your liver to fail. Are you ready practically and psychologically for a transplant now if in the 5-10% chance the treatment causes your liver to fail?

Some important questions:
What is your platelet drops to a dangerous low level? Dosage reduction? Promacta? Transfusions?

What is your doctor prepared to do for anemia? Drug dosage reductions?Procrit? Transfusions?

What if your treatment causes your liver to decompensate? Are you ready for a transplant? Is your primary care giver in place?

When will the doctor stop treatment? In what circumstances?


Best of luck to you!

Hector
Avatar universal
Well congrats on clearing the virus!!  Was this your first and only round of trtmnt that you have tried?  This will be my 1st time! Yep, my platelets are always on the low side! Currently at 60K.  I'd be willing to bet I myself will have problems with anemia. Thank you so much for getting back to me so fast! Hope to chat again in the near future! Have a great weekend:)
Avatar universal
Hector,
  Thank you so much for all of the advice and tips you have given me!  No, I am not currently on a transplant list:(  I was taken off when my insurance stopped covering liver transplants.  So ever since I was removed from the list, I haven't been back to the Mayo Hospital.
  Yeah once I did a liver biopsy, TAH-DAH, there was the Cirrhosis. Every dr I have been to cant believe that I already have developed cirrhosis. I am definitely scared about the adverse effects!
2004810 tn?1365157211
Hi and welcome to this club! As you can see from the answers you've got here, people are very well educated about hep c and treatment so you are in good hands here ;) we are all in the same boat and support each other and it has helped a lot for me.
I'm in week 17 with triple treatment with Victrelis. Since reading posts here, I must say that my impression is that people have different side effects from treatment. I see that a lot of people on Victrelis seem to manage the side's ok. In my case I think the anemia has been the hardest sx till now. I think you got good advices here from Hector and can-do-man when it comes to asking your doctor how he/she will handle this. Make sure that you and your doctor have a plan for this so you don't have to use energy on this later. I myself have been struggling with this because in Norway (where I live) we don't seem to give as much rescue drugs (Epo/Procrit). I have therefore had some blood transfusions that have helped me from having a low hgb. Other side effects that you might prepare for are the depressions that comes with this. Some might not have it, but if you do, talk to your nurse/doctor about it.

I really feel sorry for you having this desease from your mother. I myself am a mother of two healthy kids and can only imagine how hard this must have been both for you and your mother. You are young and have the future in front of you and I really hope that you will get well and reach SVR. When I hear about young people struggling with this I really feel pain in my heart. But being young and on treatment must be a good thing. You are stronger than "us old folks" in here, and therefore maybe treatment won't be as hard for you.

Wish you all the best. Keep posting here and you will get all the answers and support that you might need on your journey to SVR!
Avatar universal
Hi, no i first treated in 2005 when i was Dx. Back then it was just Peg and Riba, after 86 weeks i relapsed 1 month post treatment. So for me it took the added boost of Victrelis.

Starting treatment with platelets at 60,000 is low, I was at 80 and dropped to the upper 20's. Find out from your doctor what his thoughts are as for now this is your best chance at beating this.
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