I have just discovered that I have stage 4 cirrhosis with HCV 1b. I'm only 40 with wife and three young kids, so I want to make a good decision as I consider treatment. I'm looking at a traditional three therapy option, but I'm concerned about the side effects. Has anyone tried Daclatasvir in a clinical trial? What about the side effects of telaprevir (Incivek) or boceprevir (VIctrelis)? And has anyone tried the new lambda interferon treatments that are said to have less side effects than traditional interferon. I feel normal and I haven't noticed any symptoms, but it's a little scary to face bone marrow problems and the 101 side effects listed in the medication guides when I feel so healthy.
sorry to read that you are experiencing cirrhosis. i don't have any information on the trials you are interested. i was diagnosed with cirrhosis 7 years ago and started treatment with incevik in september and am now in my last week. i think the most annoying side effect of the incevik was the rash. i posted photos of the rash on my page. i also experienced vision problems, cotton wool spot on the retina, which was from the interferon. Also i had mental and emotional difficulties including sadness, anxiety and attention deficit. that said, i count my blessing because my hemoglobin did not drop below 10. if you haven't already done so, i would seek out a hepatologist that specializes in the treatment of HCV and management of cirrhosis. one thing that may work in your favor is age. most of us that are treating are in our 50s or 60s. my heart goes out to you and your family.
I am sorry to hear that you have cirrhosis. Hopefully you can get successful treatment for it.
There are members on this forum who have cirrhosis and who can give you much more information about the treatment and your cirrhosis. Some are very knowledgeable.
If you have cirrhosis you should be under the care of a Hepatologist at a large medical center/transplant center. With cirrhosis, you need a Hepatologist to manage your liver care, treatment, and any complications.
If you are able to do treatment, then it would be best to treat soon. Time is not on your side. The worse your cirrhosis gets, the harder it will be to treat.
I see you are located in TN. It looks like you are about 100 miles from Nashville.
Here is a link to Vanderbilt Med. Center in Nashville:
Hector, a forum member, can give you a great deal of information about cirrhosis, complications of cirrhosis, managing and treating cirrhosis and Hep C.
As far as treatment goes, I treated with Incivek. Just finished week 48 today so I am done, done, done. It was no picnic, but it was doable. However, I don't have cirrhosis. Cirrhotics can potentially have more complications from Hep C treatment than someone with a lower stage of liver damage. However, many on the forum are cirrhotics and they have successfully treated or are in treatment now. Some have attained a cure.
I would recommend reading up on the side effects and on the trial studies. With Incivek you take Incivek for 12 weeks and then continue with Interferon and Ribavirin for another 36 weeks. With Victrelis you take it for a longer period of time.
Both have side effects. Rash and anal problems are more common with Incivek. Anemia is more common with Victrelis (according to the studies).
You most likely will not get all of the side effects and not all of the side effects will be severe. My worst side effects were rash, nausea, and anal problems. All three of those side effects can be managed with prescription medications (nausea, rash) and some over the counter and/or prescription meds for the anal problems. Depression can be treated with antidepressants if you get it. Anemia can be treated with Procrit or Epogen. Neutropenia can be treated with Nupogen. Low platelets can be treated with Promacta.
Many people do not get bad side effects, but some of do get some bad side effects. The key is to get on top of them right away before they snow ball out of control.
Some of the more common side effects are flu like symptoms, aches, fatigue, malaise, no energy, no motivation, head aches, brain fog.
I am hoping some of the forum members with cirrhosis will respond.
Welcome. I hope you are with a good gastro and maybe even a liver transplant specialist since you are stage 4. Finding a doctor you can trust is the most important step. You've obviously read about the treatments. Most of what I read scared the heck out of me. The treatment is just not easy for stage 4. However..... there are those of us on this site who have completed the treatment and are now getting lab tests with no virus detected. A lot of us started incivik as soon as it was FDA approved. Others were part of a study or are on current trial drugs. I'm sure you can search, but somebody will chime in soon.
Long term side effects? It's a risk for sure. I'm happy to say that I've had few side effects so far. Treatment was rough, but I'm getting stronger every day. Just did a power walk - 5K. Hitting a 14 minute mile most days. I was happy for the opportunity to treat and be virus free. I hope your experience is as good. Stick around and search the site for tons of information. They are personal stories, but there is a lot of great advice.
Pooh55811, that was a great overview of the options. I guess there's no way to get to the other side but through this. I'm a little concerned about adding drugs on top of drugs to manage all the side effects, but there doesn't seem to be any other way. My wife is worried I'm going to get irritable, but I'm hoping I will remain my calm self. I've never had much depression, so I've no idea what that might be like. Thanks for the advice and support. Glad you're done!
We have a number of members who have cirrhosis and were successful in doing treatment.
Many of the new oral interferon free treatments currently in trial look very promising. However, having cirrhosis could disqualify you from participating and nobody knows for sure when they will actually be approved by the FDA.
Unfortunately, your liver is already scarred, meaning you can't afford to wait for years.
Although stage 4 is cirrhosis, whether you have compensated or decompensated cirrhosis can mean the difference of having a successful treatment.
Serious long term side effects like bone marrow problems are possible but highly unlikely. Most people have side effects during treatment that make them exhausted and grumpy but we are all different and respond differently.
Even those who experience horrible side effects, find that a few months after treatment, they feel fine.
For more on trials, check out this web site;
This is the time to educate your self about hep C and treatment options. When you see your doctor, be sure to write down all your questions and bring them with you. It's important to be informed and we all have to be our own advocates.
Here's a list of questions for newbies to consider when seeing their doctor.
* * *
It is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist.
Questions for the doctor:
How experienced are you in dealing with Hep C ?
Do I need a biopsy before treatment?
How often will I be doing labs during treatment?
What is your protocol for dealing with low wbc or rbc?
What about other side effects?
How often will I be seeing you during treatment?
Who do I contact in an emergency ?
Very helpful questions, thanks. I am compensated and hopefully it's early stage 4. I see two specialists this week, just to get their different perspectives. Unfortunately, the rewind button on this disease seems to be missing. It's great to find a forum where I can get helpful advice and support.
I don't think you will find any all oral clinical trials for cirrhotics at this time. Hopefully there will be some coming up soon, but in the meantime, your doctor will probably recommend that you treat since you have cirrhosis and you probably shouldn't wait.
Try googling NCT01516918- current clin trial for comp cirrhotics. Its also recruiting in TN. Its a quad study incivek+Vx222+SOC. Expecting quite good results from this trial-I'm lined up for it over in the UK.
I am sorry to hear that your liver disease has progressed to cirrhosis (stage 4) which is the final stage of liver disease.
"What is Cirrhosis?
Compensated cirrhosis means that the liver is heavily scarred but can still perform many important bodily functions. Many people with compensated cirrhosis experience few or no symptoms and can live for many years without serious complications. But it is important to remember that HCV disease progression is not linear; that is, the process speeds up so it is
critical for people to take the necessary steps to make sure that they are receiving the appropriate medical care, which may include HCV therapy to help slow down or stop the disease progression process.
Decompensated cirrhosis means that the liver is extensively scarred and unable to function properly. People with decompensated cirrhosis eventually develop many symptoms and complications that can
be life threatening.
Symptoms and Complications of Decompensated Cirrhosis
Patients with decompensated cirrhosis develop a variety of symptoms such as fatigue, exhaustion, loss of appetite, nausea, jaundice, weight loss, stomach pain, impotence, bruising and bleeding, and other potentially life threatening symptoms."
As others have said you need to be treated at a liver transplant center by a hepatologist. You have a serious illness that can only be treated properly by a hepatologist and the other specialist at a liver transplant center. They have the expertise and experience of treating patients with cirrhosis on a daily basis.
Call Vanderbilt Med. Center in Nashville as Pooh has mentioned.
Get an appointment for an evaluation. They will tell you what you need to do.
As you say, you feel fine. This is common with compensated cirrhosis. But don't mistake feeling fine with being healthy and not having an underlying very serious medical condition that if not treated properly will progress to a life-threatening illness. You also have had hepatitis C for many years, probably decades, but you also felt fine. Both of these conditions have had a serious impact of your health. The hepatitis C has damaged your liver so much that a good part of your liver is no longer functioning because it has become scar tissue. The more advanced your cirrhosis is unfortunately, the harder it is to successfully treat your hepatitis C and the more side effects and adverse events you are likely to have during treatment. We only have one liver and if your liver disease progresses to the point were it can no longer maintain all of its functions you will start to feel and see the full effects of not having a healthy liver. You need to treat your hepatitis C soon, before it can damage your liver to the point where you will no longer be able to treat your hepatitis C and will need a liver transplant to continue living.
By going to Vanderbilt you will have the best treatment options available to you. If there are any clinical trails that you qualify for, Vanderbilt will will be able to make sure you have a chance to apply to participate. But your focus should be to treat and treat soon. They will tell you the same thing.
What you must realize is that concentrating of the side effects of treatment is not what you should be focusing your energy on. Many cirrhotics feel perfectly healthy when their cirrhosis is compensated. Because compensated cirrhosis can have no symptoms just like being chronically infected by hepatitis C can have no symptoms. Sometimes even our blood levels may be normal too, but make no mistake about it, you have a potentially fatal illness and if you don't get the best care possible you are gambling with your very future life. Having cirrhosis and not treating with the best treatment available can have consequences beyond anything you ever want to deal with. I am sorry you are in this position but you must be aware of the seriousness of the medical situation you are in. As others can a test to, treatment in no picnic especially for persons with cirrhosis, but to develop End-Stage liver Disease (ESLD) or liver cancer (HCC) and become disabled and have to wait possibly years for a life-saving transplant is not something you ever want to have happen to yourself and your family. Particularly at such a young age, as you are in the prime of your life.
Please educate yourself on the seriousness of cirrhosis of the liver. The decisions you make now can have an impact for the rest of your life.
I apologize for the bluntness of what I am saying, but I was once in the same position you are now. I felt fine. Thought I was gonna live forever...Then one thing after another happened and now I have been disabled and unable to work for 3 years don't feel well enough to have much of a social life and am waiting for a life-saving transplant. Fighting for your life everyday is no way you want to spend years of your 40s.
By the way... I hope you are having surveillance for liver cancer every 6 months. Ultrasound and AFP levels. Anyone with cirrhosis caused by hepatitis C , particularly males, has a increased chance of developing Hliver cancer/CC (Hepatocellular carcinoma). Liver cancer has no symptoms until it is too late. The longer you have cirrhosis, the greater the odds of developing HCC.
So contact Vanderbilt and get the care that you and your family deserve. They will help you find the best hep C treatment available at the current time.
just in case you haven't seen this site you might want to check out -
Hector has a wonderful suggestion. Vanderbilt would be a great choice for treatment. when i was evaluated at university of colorado, i was encouraged to consider a trial, although they did say they would treat me outside of a trial. it seems that in the university setting they like to do research. the trial i eventually got involved with was an open label trial with incevik, pegasys (interferon2a) and ribavirin. the same drugs i was planning on using anyway. since i am experiencing cirrhosis my platelets were a little below the level that the study required. but willing, treatment naive guinea pigs are hard to come by. i was the researchers blood puppet. the docs were interested in the blood levels of ribavirin, so for two days i sat in the hospital and had blood drawn at regular intervals. i am currently at week 48 and would do the trial again. picking the right trial can be dicey so if you do go that route choose carefully.
You may have to do 48 weeks with stage 4 liver. 48 weeks is tough. Something to consider about trials, they may limit helper drugs. Those drugs used for anemia. I couldn't get through tx without them. If your liver was in better shape you likely should wait given your young age, for a less toxic tx, but it's not and you should go ahead and tx with the current drugs and just get it over with. Do you know if you are CC, CT, or TT? If you work get short term disability if it's available, I didn't need it but good to have. You have family to support you, little kids are very hard during tx, but they will get through it too. I know deciding whether or not to treat is hard knowing tx side effects are so awful. But we all got through it one day at a time. Good luck. Lots of good info here.
Coming here was a first right decision! You will get a wealth of information and support here!! I learned everything I know about HCV and treatment from the knowledgeable people who come here and going thru treatment was so much more doable with them along side me. best of luck
opps, brain fog got me again. i was diagnosed with cirrhosis in 2007, so been living with it for 5 years.
pcd has an interesting point regarding the interleukin-28B (IL28B) polymorphism. if you haven't considered, it you might want to look into it. if you have insurance that would pay for it, you can ask your doc to run it. some of the trials may test it. if you do screen for a trial, you are under no obligation to enroll, so screening for a trial can provide useful for information.
see the following link for more information about IL28b
its easy to experience info overload, but at least for me i want to know everything that may affect treatment outcome.
Thanks everyone. I did take the IL28B blood test, but haven't heard back. And I already screened for Daclatasvir + PEG/RBV in a clinical trial, but won't know for three weeks whether I qualify. I was really hoping for an all oral treatment, but that's probably 18 months or more away and I don't want to risk waiting that long. I see two specialists this week, one locally and one at Emory in Atlanta. My liver is still heavily inflamed, so I'm hoping that I don't have an autoimmune disease on top of the hepatitis (a suggestion that came from the clinical trial doctor). Fortunately, I have insurance, so at least I have options. It still feels like I have to pinch myself to believe that I'm in this position. I'm the only one in my biological family who didn't touch alcohol, and I'm the one with cirrhosis! Such is life and I know I'll get through this. I just hate to have to go through all the treatments and side effects and then relapse at the end of it all. I kept hoping for some kind of herbal treatment, but there seems to be nothing out there that will kill the virus other than the nasty medication. I appreciate all the great information and I just have to adjust my thinking to a new reality. Alan
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