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!!
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.
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?
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:)
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!
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!
I'm also really sorry to hear of your degree of liver disease and at such a young age, but I do think you will probably have an easier time handling tx due to your relative youth. I'm 58 now, have had HCV since a transfusion in 1984, and am on my third tx now (first time with triple, but I'm on Incivek rather than Victrelis). I first treated around 1994, then was dx with cirrhosis in 2005 and promptly started my second tx at that time. I can say that from my experiences treating at ages 40, 51 and 58, that it was definitely easier to handle when I was younger. I think that is probably the only part of my own experience that is relevant for you. I just wanted to add, since you are new here and don't yet know the people, that you couldn't possibly do better than to rely on the advice you get from HectorSF and can-do-man. They are both extremely knowledgeable and careful - neither is prone to the dread disease of forums - that problem some people have where they pontificate in an authoritative voice while spreading incorrect information. You can put your full faith in anything coming from those two! Best of luck, and keep us posted.
Oh Hector, here you are. Don't mean to hijack this thread but it definitely speaks to me since I have steatosis and doubt I can treat with Incivek. I am trying to find info. on Dr. Robert Gish - does he still practice part-time in vegas - and do you have his phone number? Thanks.
Thank you so much for the welcoming support! All of the tips and advice are much appreciated and very helpful!
I truly believe that everything happens for a reason, although I have not enjoyed being sick in the slightest, the journey that has brought me to this point has taught me SO much! I know God has a plan for me and everyone else who is willing and open to it:) I wish all of you the best of luck too. It has definitely been more helpful to talk to other people who are or have gone through this treatment! I have to pick what day I want to begin the meds now and I'm struggling between going thru with it or taking the natural/healthy route.. Has anyone here ever previously tried the all natural remedies and if so how did it effect you? Thanks to all and have a good evening-_-
Yes, I have tried most of the natural routes. I took zinc, selenium, NAC, Alpha-Lipoiec Acid, vitamin E, vitamin C, SAM-e, and tons of green tea, milk thistle, etc
But for some reason, my platelets started dropping, so I decided to treat, before they were too low for me to have the choice, to treat. Hep C is harder to treat, once you are older, also, as over 50 years, and I'm 49 yrs.
When was the last time you had a biopsy? Also, are your plateletes low, and do you have other signs of cirrhosis, such as ascites, or verices...what are your cirrhotic symptoms?
"I'm struggling between going thru with it or taking the natural/healthy route."
You will be the person who ultimately decides whether to treat with the approved medications for Genotype 1 or if you will try natural remedies.
The only known and proven treatment that gets rid of the Hep C virus in Genotype 1 patients is the approved treatment (currently Interferon, Riba, and either Victrlis or Incivek). Even the approved treatment is not 100% effective, but a person has a very good shot at cure if a person treats with the approved triple med treatment.
There are no known "natural" remedies for getting rid of the Hep C virus.
You are already at Stage 4/cirrhosis. In my opinion, if you defer treatment with Inf., Riba, and Inc. (or Vic.) you are just wasting valuable time and risking worsening liver fibrosis. In addition, if you use the natural remedies instead of the approved triple med treatment, you will still have the virus wreaking havoc inside your body. The natural remedies will not kill the virus. If you want to get rid of the Hep C virus and prevent further liver damage, the approved triple med treatment gives you a very good shot at cure. In my opinion, a good shot is better than no shot at all.
"Has anyone here ever previously tried the all natural remedies and if so how did it effect you?"
I have not used only natural remedies to treat Hep C. Natural remedies will not cure Hep C.
I wish you the very best of luck and I do hope you are able to get rid of the Hep C. You are very young and have have your whole life ahead of you.
Like you, I also got the Hep C from my mother at birth. But unlike, you my progression of the liver has been slower. I too am on Victrelis and like Bovary said, it seems the side effects vary. I am in my 14th week and the side effects have been tolerable. I am also on the younger side (not as young as you) and I am 36 years old and besides the Hep C was in great health prior to treatment.
My SX have been feeling like I have a permanant hangover, I can get through the day but I always have that "icky" feeling that never goes away. My first 4 weeks lead in without the Victrelis was tolerable. The shot was difficult the first week and I learned quickly to take some tylenol PM a couple hours after the shot to keep from waking up in the middle of the night feeling awful. I also got a little bit of nausea but some ginger candies took care of that.
Also, when Victrelis was added I started to get more Anemic. My numbers are low but my Dr said if it is a gradual decrease there is less need for rescue drugs as my body is adjusting to the change and thus I have lower energy but manage to work full time and take care of my 3 and 8 year old kids (thank god for a helpful husband).
The Victrelis has also added a bitter taste that is constant, so foods that used to taste good no longer do and I find it more difficult to eat even when I am hungry as nothing ever "sounds good". I have since lost some weight but I was already pretty thin to begin with (could be considered a good SX). I've also had a couple of "sores" or red spots that seems to sprout up randomly and seem to take a couple of weeks to go away but other than these, I feel I have been lucky with the side effects. My biggest fear is as I progress with treatment, my side effects will compound and I will start losing my hair and continue to digress and be unable to work (which is how I get my insurance to pay for treatment) and unable to take care of my kids.
All in all though, I realize my SX have been minimal and my Dr says I am handling them very well compared to other people. I was treatment naive Geno 1A and was undetectable at 12 weeks thus I am going to have to do 48 weeks of treatment. :(
Feel free to contact me with any questions, I am not an expert in treatment but if you hang around the boards long enough you will learn invaluable information from the regular posters.
I realise that this is an old post, but I just wanted to answer a point in your post. I have cirrhosis at level 6 on the ISHAK scale (the highest level on this scale) that is well compensated. I know that I acquired the virus through a blood transfusion in 1995 so yes less than 20 years is possible.
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