Are there people out there without major sides?

[garrygee]

I'm lead to believe that most people do fairly well on triple therapy with incivek, but what we hear from on this site are the ones with complications.  If this is so, I would really like to hear some success stories.  I'm starting in about 2 wks and frankly I'm getting pretty scared with the horror stories.  I finished a 6 month series with ribavirin and interferon, then a 48 wk series of peg interferon/rib almost 12 years ago and did reasonably considering I was trying to work 70 hrs a wk and although I'm now older, I'm still in pretty good shape.  I would sure appreciate some positive feedback.  I really want to do this.

[adamben101]

I just finished 48 weeks of PEg, RIBA, and 3 Gilead competing meds to Incivek.  It was a trial.  Overall no sides to complain about.  Even when I was tired, who knows that wasn't normal?  I played golf, worked hard long hours every week, and no one would have ever known I was on treatment.  Good luck!

[1swimmer]

Garry,
So glad you have support at home. I've been doing this on my own, and that produced a lot of anxiety, whenever I had a snafu. Sometimes I would be so tired and have to make phone calls. Sounds so simple and yet it was a pain dealing with ins. co. and specialty drug co. Now that I am nearing EOT, I see the light, and that cures all sx.
Best to ya,
C

[garrygee]

Thanks Billy, I really appreciate your comments.  I'm so grateful to have found this website.  Looking at all the side effects when I first logged on and remembering the trouble I had with previous treatments scared me at first, but as people responded I've felt more comfortable with the whole idea.  Since I won't be trying to work 70 hours a week and pulling call on top of it, I should have a completely different experience this time.  I think I'm probably still a couple weeks out from starting, but I'll keep posting.  Thanks again.  Garry

[working dog]

thats neat about your 42 years together with your wife...you don't see that much anymore... she could be very helpful during tx...first i would say take it real easy on tx...i was in bed almost all the time on treatment...first time in my life to be in bed during the day...i had unbelievable help from my girlfriend and twin sister...i would be ready for quite a difference this tx using incivek...just don't push too hard to stay in shape during tx...let the drugs do their thing...hopefully you'll und at 4 weeks or less...of course don't miss a dose of incivek...it was the first time treating for me starting at 2 to 3 stage and grade...i was <43 at weeks...still svr in 19 weeks tx with very bad symptoms...i feel great now 10 months post tx...the incivek works great...good luck...billy

[garrygee]

You are correct.  My first round of treatment, I never cleared completely.  My viral load went way down but I was never nondetectable.  With the pegylated interferon/ribavirin I cleared after the first month and stayed that way until 3 mos after treatment.
My last liver biopsy was 5 years ago and as I recall I was stage 2 inflammation and stage 3 fibrosis.  No cirrhosis.  I'm going to call my doc today and see if I can't get a new biopsy before I start, since we have a delay anyway, so we would know where I am now.  
Thanks for the updated info on side effects.  I don't think I mentioned before that I am still married to the same woman I went through this with before and she will go get anything I need after we start.  We've been married 42 years now.  For people who worry about their spouses contacting this disease, she doesn't have it.  They told us just to not share toothbrushes or razors.  Those are the only precautions we've taken.

[Advocate1955]

In my journals I have listed some information that many forum members here have shared for managing side effects:

http://www.medhelp.org/user_journals/show/333064/Incivek--Ideas-for-dealing-with-anal-rectal-pain-or-bleeding

http://www.medhelp.org/user_journals/show/333004/Incivek--Ideas-for-Managing-Rash

http://www.medhelp.org/user_journals/show/333000/Incivek-Take-with-20-grams-of-fat

Advocate1955

[Advocate1955]

I don't think non-responder and relapser are the same.  Were you a non-responder to the old non-pegylated interferon/ribavirin and then a relapser on the new pegylated interferon/ribavirin?  Do you know what stage of liver damage you have?
I would buy all of the over the counter type remedies such as Gold Bond or Eucerin body wash and cream, Balneol (for your bottom), Tucks (for your bottom), baby wipes, Loperimide for diarrhea, and then ask your doctor if he would recommend writing prescriptions for Triamcinolone (rash), Hydroxyzine (rash), an anti-nausea med, and Lidocaine (anal pain) or if he would prefer to wait until the symptoms appear to prescribe.
A few days before you start treatment, I would stock up on first aid gloves, bandaids, disposible baggies, foods that are high in fat, and foods that you like to eat so that if you don't feel well you won't have to go out right away.
Advocate1955

[garrygee]

My first try with interferon/ribavirin I didn't respond, but one month on pegylated interferon/ribavirin I was nondetectable and continued that way for a year.  It was great for my liver (near normal when I finished), but in three months, it was back.  So, I guess the answer is, I relapsed.  I still have the same doctor and I think he wants me to be rid of this thing as bad as I do and has told me he would like to treat me for the full 48 weeks with incivek.

[PJ1966]

Have you been a non-responder in previous treatment
Was just curious how he thought you were a non-responder.

[Advocate1955]

My husband had moderate sides while on triple tx with Incivek.  He had fatigue, moderate Inc rash, anal/rectal pain and bleeding, mild symptoms of anemia. The symptoms were more mild after completing the 12 weeks of Inc.  He was able to work full time throughout treatment.
Advocate1955

[Cory255]

On week 28 doing the Incivek Triple Tx, undetected since wk 4.  Doc thinks I'm a non-responder so doing 48.  Sides were rough first 12 weeks, then got easier.

Hang in there.

[Isobella]

I completed triple therapy with Incivek in a clinical trial.  My sides were light compared to many.  I had minimal rash issues.  My biggest complaint was anal irritation from the Incivek.  It begain about 12 hours after my first dose and went away just as quickly after the last dose.  

My daughter is 6 weeks shy of completing her treatment-also triple therapy with Incivek.  Her sides have mirrored mine.  Anal irritation, mild anemia and neutropenia.  

We both started out with prescriptions in advance in case we ran into trouble:  Atarax for itching, Zoloft for depression (we both found we needed this), Clobetasol and Protopic for rashes.  But probably what was most important was PrepH and Tucks. That and coming here to vent :)

Tired and cranky by the end -48 weeks for both of us- but so very happy to be free of HepC.

Wishing you the best.  

Isobella

[Reidmusic]

I just started triple therapy with Incivek this week and so far the side effects have been minimal. I've only had fatigue, minor aches, and  a brief headache, so far. It's way too early to tell how it's going to go overall, but every day like this I consider a blessing.

Stay in touch and keep posting here.

[garrygee]

Thanks again.  I have my list ready for my doctor.  I know his heart is in the right place, but I also know how busy he is, so I'm going to suggest that he give me prescriptions in advance.  I've been with him about 12 years now.  He got me in one of the first studies of pegylated interferon at the VA in San Francisco.  I hope you keep posting and let us know how you're doing.

[pooh55811]

Some doctors, especially hepatologists who treat many people with Hep C, do give prescriptions in advance. A lot of doctors don't. I don't really know why they don't. I think many are just not familiar with the side effects, how bad they can be, and how to treat them. If your doctor will not prescribe the medications in advance, then I would ask him how you will be able to get a hold of him in the evening or on the week end if you need the side effect medication. And be sure you have the contact information.

Before starting Tx I was told by my original case manager that they treated side effects and that my original doc was on call all of the time. That was a lie. I had been telling them about my nausea for 8 weeks and they did nothing. When I was extremely nauseated and vomiting, I called the case manager and was told doc was gone and I would have to go to urgent care. The same thing happened when I had the rash. They kept ignoring it for 3 weeks until it got really bad. Then the case manager told me that the doc was not around and I would have to go to urgent care. So be sure that the doc is on board with treating side effects in an appropriate manner and in a timely manner.

When I finally got meds for side effects, I was on Zofran 8mg every 8 hours for nausea. I was on Hydroxyzine 50 mg orally every 6 hours, Fluocinonide ointment, and clobetesol solution. There are all prescription. The over the counter crap was useless.

I took Tylenol as needed. Some people take NSAIDS. Ask your doctor what is okay for you to take.

Best of luck.

[pcds]

I would disagree with the statement that most people on this site are those with difficult side effects.  I believe many people are on this site to learn about hep c, treatment, and how to manage side effects.  Hep C is a serious virus.  I knew nothing about in 2011 when I first found out I had it, and searched for information.  The best information I found was right here.  Many were waiting for the PI meds to come to market and this site was the place to be.  Still is for anyone with Hep C.

[garrygee]

I am so happy for you.  I really want to be cured.  I've had Hep C since it was called nonA-nonB and it's always back there in the back of your mind to worry you any time you have a little ache or pain.  I just want to be rid of it and it sounds like this is a way that I can do it.  Thanks so much for your comments.  

[garrygee]

It sounds like the key is treating problems early.  I'll do that.  Thank you so much for your comments.  I'll find a way to get through this.

[garrygee]

Thank you very much for your comments.  That's the encouragement I was looking for.

[garrygee]

Many thanks for your comments.  I'm just going through a little pre-treatment anxiety, I guess.  I'm 66 as well, but still in pretty good shape.  I retired last December and I'm sure I can do this, one day at a time.  Should I request rash, nausea, etc. meds in advance?  I bought loperamide over the counter.  I assume I can take Motrin, tylenol around the clock.  I did before, but I'll talk to my doctor about it before I begin.  I really like Naprosyn better but I'll check on that too.  Thanks again.  I really appreciate your comments.

[skiyaltr]

Agree with all the above.  The incivek rash was the worse for me; lasted about 3 weeks.  Riba was reduced to 600 mg and that has the case since.  Tonight is shot 38.

All other sides are manageable.  Dry cough, yes, but the humidifier helps there.  All in all very manageable and I attribute that to the 600 Riba.

I trearted in 2006 @ 1200 mg and had to do procrit.

I am active with exercise and yard work, and attitude, well sometimes there are moments.


I probably got some benefit out of the 2006 tx, but this is a very doable plan at 24.

Good luck with your decision.

[pooh55811]

Welcome to the forum. It is a great place for information, answers, and support.

I agree with the above posters. Everyone is different so everyone responds differently and has different side effects as well as varying intensities of side effects. Some have few and others have more. The fact that you have already done Tx twice and had few problems is a good sign. You will have the third drug and it could cause some problems, but you won't know until you start. With any luck, you will sail through Tx with few side effects and/or mild side effects.

Plus, as others have said, people who have few side effects frequently do not post on the forum. A few do, but most don't. It is the people who do have side effects that post. So the posts are skewed away from people who sail through Tx easily and towards those who have problematic side effects.

I don't know if you live alone or with someone. If you live alone, I would have some Loperimide or something similar on hand in case you get explosive diarrhea. Obviously, if you have explosive and/or very frequent diarrhea you won't be able to jump in the car and go buy some Loperimide. Incivek is known for its anal/rectal problems. So that is one thing I would have on hand. Anyway, many of us have found if we can keep our stools firm then we don't get the worst anal/rectal problems.

I guess my most important suggestion would be to get on top of any of the more troublesome side effects immediately, before they snow ball out of control. These would include: depression, anal/rectal problems, rash, nausea and/or vomiting. These side effects can be controlled with prescription medications. Loperimide is over the counter. However, if the rash is bad or if you are having problems with nausea or vomiting, then you will need prescriptions for them, and you need to treat them sooner rather than later. Same for depression. Low hemoglobin, low white counts, low platelets and also be treated with prescription meds if needed (rescue drugs). But you said you did well before so maybe you won't have a problem with blood counts.

I am 66. I treated with triple med therapy with Incivek. I did a total of 48 weeks of treatment. I had some side effects which were troublesome, but the main problem was not the side effects. The main problem was my treating team had no clue how to treat them and no inclination to treat them, so mine got really out of control and snow balled rapidly. Once I finally got the side effects under control, treatment actually was not bad. It was not a walk in the park, but it was quite doable. In fact, the last 3 months or so of Tx I was doing well and was increasing activity daily and doing many things. In fact, in many ways I noticed I felt better than before I was on Tx. I am now 5 weeks post Tx and feel pretty good. I still have a few side effects, but every day I gain strength and stamina and every day I notice that some side effects has disappeared. I was undetectable at weeks 8 though 48 (detectable at 4 weeks). The end of treatment test was very sensitive so I am quite hopeful.

Even with the side effects, I would not hesitate to do treatment again if indicated. Hep C treatment is not as problematic if compared to end stage liver disease, so that puts treatment in perspective.

You will most likely do fine. Keep us posted. Best of luck.

[jules2551]

I'm on Wk 12 with Vic and I feel extremely fortunate in not having many side effects as compared to others.   I've had the occassional bathroom issues, headache, body aches, fatigue, etc.  Sometimes you just need to listen to your body and take a nap or a tylenol.  

There is a list floating around (I think from Pooh) that includes a grocery list of items you should keep on hand just in case you need them.  

Also make sure your Dr is ready with rescue drugs in case you need them.  My ANC and WBC dropped drastically and my Dr called in Neupogen.  Within two days my #'s were through the roof.  So make sure you and your Dr are on the same page.

Good luck with tx!

Jules

[orphanedhawk]

I want to point out the triple therapy has only been approved for use by the FDA since May 2011.
You aren't going to find as large a population with experience doing the triple tx.
It is adding one more potent drug to the double duo.
However as a transplant survivor, I can assure you the treatment is better than losing your liver.

If your liver is in good condition, you might consider waiting for the new oral meds which are doing so well in clinical trials.