triple therapy with cirrhosis

[vjosi]

I started triple therapy on Friday and by Saturday I was unable to get off the couch. I am 57 and in great health except for the cirrhosis, is it normal to be so sick and does it lessen over time? I am so confused about wether this is going to help my liver or hurt it, will I be able to get a transplant if I still have Hep C?
So many questions...just really confused and need to care for a 4 year old so this being out of it is not ok.
thanks,
vjosi

[heart_in_the_keyes]

Hi. You didn't say what stage your cirrhosis is in and if your liver is compensated or decompensated.

I am stage 4  Meld 11 w/decompensated liver.  Was approved for triple x therapy and for the Gilead and liver specialist pulled me off of it due to my decompensation stating that even though I was in good health otherwise my liver couldn't tolerate either drug therapy.  It was stated that a liver transplant would be easier for me to tolerate than the drug therapy.  

I am working on the pre-transplant criteria tests right now.  The liver transplant center here does transplants at a lower meld point than most facilities.

The effects that you are having is what my doctor said would happen to me. He said I would or could,  even with my positive I can overcome anything attitude,  feel like I had been run over by a train.  So....good luck to you if you can over come this.  If my liver was compensated I would be on one of those trails too.  

New meds are already here.  It will the take the medical community to get the greedy drug companies who are fighting over the financial rights for this drug to stop it and be ethical.  It should be soon.  

[sirslic]

Hi there I am 61 same as you compensated but cirrhotic on tx with incivek i am on week 24 going to see my dr. in nyc next week,  I am so tired if this treatment I was going to ask the dr. if I could stop after 24 weeks have been UD since week 4 never been treated before. who is your dr in nyc i see Dr. Dieterich at Mt Sinai. Kevin

[crossroadsec]

You have come to the right forum. There is a LOT of caring and experienced people here. They held my hand through triple therapy and I am grade 4 cirrhosis. Like others have said, it's quite a ride.
It is frightening to think of more damage being done to your liver. The tx can be hard on your whole body. It can be like a year long flu. Are you going for 48 weeks?
That said, there were a few of us with severe side effects and cirrhosis who all made it through. Take it one day at a time and talk to your doctor about every side effect. Ask about how they will help you with medications as the SE arise. You'll have to be mentally strong, but don't try and be so tough that you don't ask for help. There are always options and how-to-survive-tricks for every side effect.
I hope you do well. My MELD score went DOWN and my liver enzymes got back to normal within a few weeks of starting Telaprevir. I truly hope yours do too.
All my best, Karen:)

[orphanedhawk]

Hep C is the number one cause of liver transplants in the US. You can indeed get one with the virus, and getting one won't get rid of the virus.

Nobody knows when the new meds will be available, nobody.
Treatment is a roller coaster, take it one day at a time. Some days are better than others.
Keep drinking lots of water, eating well and exercising.
Good luck.

[WOG1964]

Good Morning Vjosi,

I woke up thinking about you and praying for a better day for you today. I have no idea what treatment feels like yet but my heart goes out to everyone on this forum. I am preparing myself everyday with prayer and educating myself on this awful ugly virus we all share in common. But just know that today i will be thinking about you all day and sending lots of love and prayers your way. May God keep you strong and get you through this for you and your little person. You are still young and FAVOR is on your side. Fight, Fight, Fight. The Fight is Fixed and you have the Victory!

Blessings

[Advocate1955]

Agree with can-do. My hubby was one of those who was told in 2007 that what would later be called Incivek should be available by 2008. We all know that didn't become reality until 3 years later.
Advocate1955

[can-do-man]

I really hope you find a way to finish, being cirrhotic waiting would not be a good ideal....... And when people post new drugs will be here by the end of the year or early in 2014 I have only this to say....... We have heard all that before here and they were off by two and a half years. But of course all those people left this place, they didn't stick around to admit how wrong they were.... VRTX said this about what is now Incivek

couldn't think of a nickname

Oct 03, 2006

To set the record straight, VRTX has said they anticipate filing for approval in 2008 (mid at the earliest I think), and it would be subject to expedited review, which is 6 months, instead of the normal year that is taken. That would take place after phase 3 is completed.

couldn't think of a nickname

Jul 28, 2006

I think it is also important to point out that their NDA plan for filing in 2008 is for complete labeling, not just tx-naive. They did dose tx-failures in the very first trial, and it worked well. It is just a matter of time.

However, should they get transformational data, it is theoretically possible to speed things up further. Not something I would ever bet on though.

[pooh55811]

"I started triple therapy on Friday and by Saturday I was unable to get off the couch. I am 57 and in great health except for the cirrhosis, is it normal to be so sick and does it lessen over time?"
--------------------------
Treatment affects us all differently. Some have pretty sever side effects and other have milder side effect. I think it is pretty normal to feel wiped out when one first starts treatment. I know I was wiped out the first few days and I was also spaced out and a little light headed. The spaced out  feeling eventually left and I did not feel like I was having an out of body experience after about 3-4 days. However, the injections of interferon always wiped me out and I basically rested for about 2 days after every injection. I felt like I had a major case of the flu. While I was on Incivek, I felt pretty crummy most of the time and Incivek caused me to have some aggravating problems which then snow balled into other problems. After getting off the Incivek (at week 12) I felt a lot better, but still not great.

You don't say which side effects you are having other than feeling wiped out. Unfortunately feeling wiped out is not something we can do much about except try to rest when we can and try not to expect too much of ourselves. The side effects do wax and wane so some days you probably will feel better than other days.

You do have cirrhosis. Sometimes people with cirrhosis develop more side effects or worse side effects, but that does not always happen. Hopefully you and your doctor are keeping a very close watch on your blood counts, blood chemistry, thyroid function, and clotting ability. I had weekly blood counts to monitor for anemia, neutrophil abnormalities, and decreasing platelets. Plus I was monitored monthly for chemistry (metabolic panel) and thyroid function as well as periodic clotting function. Hopefully your doctor has a plan to address anemia and/or low neutrophils should they appear.


"I am so confused about wether this is going to help my liver or hurt it, will I be able to get a transplant if I still have Hep C?"
------------------------------------------
Occasionally treatment can be a problem for the liver, mainly in cirrhotics, but many cirrhotics treat successfully and attain a sustained virologic response (cure). We have many cirrhotics on the forum who have treated and who have attained SVR.

Since you already have compensated cirrhosis, it is very urgent to treat before your liver fibrosis progresses further and you develop decompensated cirrhosis. You can feel fairly good right up until you decompensate. So you really do not want to take the chance of stopping treatment and then decompensating before any new treatment is available. If at all possible, it is important to try to figure out the best way to deal with how you are feeling, and continue treatment even though you feel wiped out from the drugs.

For most people treatment helps their livers. You do not really have a lot of options here. Because of the cirrhosis, it is urgent that you treat sooner rather than later.

Yes, you can still get a transplant if you have Hep C. However, it is best to try to keep one's liver compensated by treating and getting rid of the Hep C. There are not enough livers for all of the people who need them, so it is better to keep your own liver functioning.


"So many questions...just really confused and need to care for a 4 year old so this being out of it is not ok."
------------------------------------------
Can you get any help with caring for the 4 year old? Ideally you could get some help from a relative or friends or day care or through church, especially on the 2 days following your shots. It seems like a lot to try to do treatment while caring for a 4 year old.


In addition, there are new drugs in the pipeline, but no one knows when they will be on the market or if the insurance companies will pay for them. It could be much longer than has been suggested. In addition, the new drugs do not work as well on some people as they do on others, so there is no guarantee that the new drugs will be more effects for you than the drugs you are on. I

If it was me I sure would not be gambling my life on waiting for new drugs that no one knows when they will be available. You really do not want to decompensate while waiting.

Here's hoping you can find a way to stay on treatment and get rid of the Hep C for good.

[Dee1956]

Hello, do you have any help at home? I am your age. I finished Incivek, Riba and Inf a year ago.  I also have cirrhosis.  I had some hard times though I did get through and now am SVR.  Saying that, if I had not had my husband to help me I don't know that I could have gotten through it.  He was constantly going to the store for me for prescriptions food shopping etc. While I had a hard time that does not mean that you will however you need to be prepared.
If you can try to stock up on food on a day when you can, maybe some finger foods and drinks that your 4 year old can get to easily .  Normally the day before you do the shot will be your best day.  Unfortunately the Incivek really adds to the discomfort.  At about 5 weeks or so the Riba will have built up in your system to a point that this time doesn't feel so bad.
I am sorry your doctor did not prepare you. Many doctor act as if it will be the same as just the Inf and riba and that is not true, it is much tougher with the 3rd drug.  Saying that; there are many people on here who did all 3 and continued to work, my hat is off to them.  I hope you are on anti depressants as the treatment can really hit you mentally as well.
This site is really good for advice on what to do for side effects.  Please keep in touch, let us know how you are doing.  There is a wealth of information here and everyone is more than willing to help you.

My best to you.
Dee

[juli4591]

Good morning - I hope you are feeling better today!  My hub's close to you in age and he is in week 7. He's doing the incivek regimen.  It has been a real roller coaster ride.  I swear sometimes it seems like these side effects have an evil intelligence about them, and can figure out what is going to floor you on a daily basis!  I want to reinforce what has been posted about treating side effects aggresively and not waiting.  For hub, the mental side effects have been hard.  He is currently taking wellbutrin and ativan.  Feelings of doom and hopelessness can come on very quickly, so if you are not on an antidepressant talk with your provider about the warning signs.  Lots of water, Nausene tablets for nausea, Neosporin Eczema creams and Gold Bond among others for dry skin and rash - our house is now well stocked for any side effect that decides to come creeping around! The tiredness, breathlessness, exhaustion etc are hard for him to bear but he is getting through it.  he got a huge boost when we found out he was UND at 4 weeks!  I think things will get a bit better when the Incivek is done.  it is a hugely powerful drug.  We weren't prepared for the magnitude ( drs said it didn't add a lot of side effects - maybe not but if multiplied the existing riba/interferon sides by about 100x! ). I got so many good ideas from the forums here - people are so generous here and willing to share ideas and encouragement. Just hang in there - what seems hopeless and unconquerable can resolve itself with rest and taking care of yourself.I hope you have a support system, but if not the people here are wonderful in getting back to you and sharing their experiences.Don't be too hard on yourself or expect much  - your main job is healing and enduring!  Best wishes.

[hepcat1954]

Treatment will probably get significantly harder.  If you have a 4 year old to care for and are adequately compensated, waiting for the new meds might be worth thinking about.  What is your genotype?  

Sofosbuvir should be available for prescription by end 2013 or beginning 2014.  Talk to your doctor about your symptoms and responsibilities to your family and make an informed decision on continuing or opting for the new meds.

Good luck,
HC

[Idyllic]

Wow sorry for the fragmented sentences. I meant before I started treatment I read posts that advised me to take care of certain things prior to treatment since I might not have the ability to do so during treatment. One such task was hauling 100 pounds of dry dog food from the vet or CostCo. Another was not hosting certain events at my house.

But with cirrhosis the more detail you can provide the more others might be able to guide you on managing side effects and the like.

[cheflady]

hi welcome to the forum and well done starting tx. Like idyllic says it would be helpful to have more info. drugs genotype etc. My hubby was on teleprevir and it really floored him but it did improve once his body started getting use to it . The tx is hard but durable you need time to adjust and hopefully get some support for looking after your son drink plenty of water and try to eat well and make sure you rest when you can. Hopefully sx will lesson as you get into the course. My hubby found it best to have jab last thing at night which meant he could sleep through most of the sx Please keep us all posted and let us know how you are getting on. I wish you all the best ps hubby was und at wk 4 and as remained und so far! Good luck

[Idyllic]

These meds are pretty harsh so some discomfort is to be expected and it varies for everyone. Which meds are you taking? The Incivek or the Victrelis?
Incivek made me really nauseous at first and I ended up having to try a bunch of different things to take care of that.

It would help if you could provide more info since each med has a different side effect profile. I am not sure about the transplant. There are others who are familiar with cirrhosis/transplants and all that. You might want to expand on this as well to get a more tapered response.

Be sure to post again and some of these sides need to be treated aggressively and right away.

Off hand I would say having help with your son and maybe even a bet of a sfety net when it comes to finances is a big plus when it comes to treatment. Some people leap right into treatment without having the chance to get certain things in order. I know I was glad someone on here to buy large animal dog food in advance. :)

[gopkrs]

Wow, sorry you feel so bad. I finished 24 weeks triple 6 weeks ago. It did not hit me so soon as it did you. I am 62 and well compensated but cirrhotic. You will have to see if you still feel as bad in a week (if you can go that long). If you can't; it might be two years or so for the new medications. Unless you were able to get into a study. I don't know if you would be eligible. As for your liver...yes, the tx is good for it because the virus stops attacking it for as long as you are on tx.
Sounds like you would need help to care for the child.
My good news is that I am UNDetectable 5 weeks post tx and my liver tests have improved. I am type 1a. The stuff does work. I was UND early and I had bad side effects so the Doc said for me to do the 24 weeks.
In the meantime, you could try some Pepsid AC (20mg twice a day) and have your Doc write you a prescription for Ambien (I needed 10mg as 5mg did not put me to sleep). If you are able to sleep; I think it helps. Also, when you start itching, use Cetaphil "CREAM" a couple times a day and especially after a shower. (you can also get prescription cream which I needed sometimes) Try not to use HOT water much! To be honest, I kind of stayed away from showering as much as I could. And my apt. was freezing. I think that may have helped me.
Good luck to you! Let us know how it is going.