Little to NO symptoms on triple treatment

[journey91]

I know there are a lot of people out there with some crazy side effects of treatment. Is there anyone out there who has experienced little to no symptoms with triple treatment. Doc keeps saying I could be one of the lucky ones but want to know how many lucky ones are really out there! Thanks everyone for the help!

[willbb]

Hi Tony.. It would be best to go to the top of the page where it says"post a question" and start your own new thread there,..that way more folks will see it and respond.
There are many here taking INCI..and you should get some  good ideas  what they are  eating for the 20 gr of fat.

Good luck  on your upcoming tx. and welcome to the group...
Will

[toe79]

My name is Tony I start triple treatment with incivek I'm stage 4 cirrhosis scared as most are about side affect but I want to live what are people eating to get 20 grams of fat with meds start treatment this Tuesday afternoon after work really freaking out reading here helps

[blondie717]

     Hello Journey91, people have been suffering sx for years, seems now they may be a touch worse?  I did a clinical trial. With no real sx. Man the 48 wks just flew by. Some of the folks I have talked to say they felt better once they stoped the 3rd, drug.  it has been aprox 1.5 months since tx ended for me. So far I am UND.  My biggest battle is putting a few pounds back on.;-) So for now I have to eat pie n/icecream 2 X's instead of once. Or Brownie and icecream 2X's...So you see journey "cheer-up;-0)" perhaps you can kill 2 birds with 1 stone. (loose weight and B UND)  Personally and with NO PROOF! I believe the younger the better. Another reason I did mine under the BIG 50.  Good luck to you and what ever you decide to do.
    Now I must get back to my chili cheese tots (all ten lbs of it. which is following the jelly donut;-))))  Then I must direct all that fat to the T&A parts of me, instead of the belly and Thighs I suspose...Have fun what ever you do

[rockymoe]

Be thankful I am on my 12th week including the 4 week lead and i am still sick as a dog!

[nowhine]

It sounds as if you have made your decision to treat. Only yourself and a doc experienced in treating HCV should be involved in this decision. My only point is that we know, for many, it takes years to cause significant damage to your liver. You may ask the question to your doctor- should I wait? This may give a little time for results on many of the new DAA's. This may also give you more time to continue your fight with weight etc. Best of luck and you will be ok.

Here are some references for your review.

http://hcvdrugs.com/
http://www.hcvadvocate.org/hepatitis/hepC/HCVDrugs.html

[journey91]

I am 25 so yes, young. I found out this AM that I am GT 1. This is what I was expecting so not a big shock as I was already told 80% americans with HCV are GT 1. My liver is stage 1-2 and I'm pretty sure I've had virus for 6.5years. I am being told that my liver stage is higher than normal from hving virus for only 6.5y. I am over weight and have non-alcholoic fatty liver disease so I have that working against me as well. I have been overweight for ab 8years. Since finding out about fatty liver disease and HCV I am down 15lbs. I have really changed my eating habits!! Because of those circumstances I have decided I will begin the triple treatment within the next few months. I have a very supportive family that can help out quite a bit. I am praying for moderate side effects but have knowledge on how bad they get (thanks to everyone here). I am very happy with the high success rate of the new and "improved" triple treatment. If all the bad side effects means getting well and undetectable results, ill take them. I am continue to research and ask questions. Need to prepare myself, children and family the best I can. - am also switching specialists as the one I have now was willing to start me on meds todaty before explaining what they were or how to use them correctly. I pretty much know but only because I've done my own research. She has explained nothing to me. I thank every one of you soo much. You guys arew amazing and am very very thankful for finding this forum. Ill be posting lots more questions I'm sure. They seem never ending!! And ill take all the advise I can get!!! Happy Halloween!

[nowhine]

No one brought up the option of waiting and not treating at this time. I agree with Lifenet62, get all your test and biopsy completed. If you are young and early stage of liver damage why not wait. There are many, many new meds in trails, or soon to be in trails, that may kick this stuff with shorter treatment durations and fewer side effects. It may be 3-5 years before we have the outcomes of these trials but we know HCV often takes 20-30 years before any significant damage occurs. In the past 8 years that I have been following we went from approx. 45% cure, for g-type 1, to 80%. Your doctor will know whats best.

[fretboard]

I have only run into one person at a HepC support meeting.  He was one of the facilitators, young kid around 20-25.  Genotype 2, tx'ed for 6 months and said he never felt any sx;s at all.  He was only on SOC tho'.  Good luck to you.  

[hostalavistababy]

"Have an IL28b aliele gene test done. Insist on it. This will give you a better idea as to how therapy will be tolerated."

If you mean how well the individual will respond to interferon according to their specific allele this is true but allele doesn't effect how well the individual will tolerate treatment.  As info, with triple therapy, CT & TT doesn't necessarily mean an unfavorable response.  Since journey was inquiring about side effects, thought that might be a good point.

[Lifenet62]

Try to not get too involved with researching..... The good the bad the ugly. Get your liver biopsy and ultrasound first. Get your genotype. Have an IL28b aliele gene test done. Insist on it. This will give you a better idea as to how therapy will be tolerated. There are three grades. CC, CT and TT. When you have all of this valuable and important info, then you will be prepared to seriously "shop" tx ( treatments). I did what you are doing and I am very similar to you in your outlook. I almost drove myself to anxiety attacks. Take it one day at a time, be proud of who you are and dlay the dragon. We are all here for you journey. Jan

[journey91]

Absolutely will :) thank you tons!

[Bill1954]

It’s really important to keep in mind that people that are largely unaffected by the disease and/or its therapy are underrepresented in internet forums. They manage to get through all this with few issues and aren’t compelled to find support. Weigh this into your equation as you go forward; good luck to you,

--Bill

[journey91]

Thank you to all. I am making lists of everything so I can be prepared or think I'm prepared for anything. I'm definately doing my research. I do not know my genotype yet so trying to research drugs and side effects for each treatment. I do have family that is very very supportive including my mom and dad which would definately help in times of need. Sometimes it may not be possible tho. I will try to prepare myself for those times by stocking up with rescue items and staples. I'm hoping for the best but preparing for the worst. One of my lists consists of symptoms everyone is telling me and reporting on other posts and ways to treat them (from here also). I am really glad I found this forum becuase all of you are so helpful. I have to be strong for my kids whether I want to be or not and on here you all are very inspiring and I haven't even started treatment yet. I'm the kind of person who needs to read the bad stuff and try to prepare or atleast know what could come during the 24 or 48 weeks. I am a very optimistic person and I thank god every day for making me that way. I may have a few days where I'm real down in the dumps about everything but I turn to my faith and realize you can't live life without a smile. Its too short and way too much out there I don't want to miss. So thank you to everyone for helping me through all my questions :) good and bad help so keep um coming!
  

[curiouslady1]

I may be wrong but it appears that the worsening of side effects come later rather than earlier in the treatment.  Some persist after the treatment is over for some people from what I have heard.  I am on oral drugs and don't have any side effects to speak of.  

[ptz]

I had little side effects until the last couple of weeks.  I'm in week 18 of triple tx.  I was going along with a maintenance of procrit and nuprigin..My rbc and wbc were staple and I felt OK for months then 2 weeks ago my blood counts dropped. 1.7 wbc 8.5 rbc.  I missed about a week and a half of work. My numbers have come back up to tolerable levels and I go back to work tomorrow.
I asked the doctors why I felt so crappy after feeling OK for almost 4 months and they said maybe the question was why I didn't feel crappy the whole time.
I hope you make it through.

[JAY0914]

i consider myself a lucky one..never missed a day of work, no rash, .my bloodwork stayed inline throughout tx...i had some bad and some good days..would say about 50/50...nows it over it almost feels like a dream...they say time flys by when your having fun...welll....it wasnt too fun but it flew by fast!  

[willbb]

Also ..from what I understand you do not yet know your Geno type  therefore it would be difficult to know until then what side effects there would be as you do not yet know what drugs are needed.  Each one comes with it"s own issues....
Best ;;
Will

[willbb]

I would agree that the number of side effects and /or the severity has very little bearing on whether the  therapy is successful or not.
These meds affect everyone differently it  seems with some common elements and varying degrees.
Also I would not make the desicion on whether to treat or not based on the possible side effects you may or may not get,,,that desicion  is always best made in consulatation with your doctor,,deciding when may be the best timeframe .given your individual situation,with liver damage being the most important factor involved...
Good luck...
Will

[pcds]

Since you have young children I assume you are not too old, I'm 59.  I worked everyday until week 10 and things fell apart.  I've been off work for a month.  All about anemia.  I needed help with my dog.  So young children and they way these drugs affect you emotionally will be tough.  You will need help.  If there are grandparents that can help you that would be great.  This treatment is hell for most of us.  I was lucky I suppose, didn't get the dreaded rash until week 11, no hemmoroids, but the anemia is grueling.  A good doc will help with that, there are helper drugs and sometimes dose reduction.  I would stock up on anything you can before starting tx because trips to store are exhausting.  I don't want to scare you and this forum can do that.  I didn't read much when I started because it scared me.  I just dove in and now I'm at week 14.  I struggled with the idea of waiting for newer drugs since I have no liver damage, but the docs really encouraged me, mostly because of my age.  You never know after 50 what will turn up healthwise.  So I'm in it.  I can't say right now that I made the right decision.  I suppose I will say that if I get SVR.

[pooh55811]

You take the Incivek for 12 weeks. It has a lot of side effects, but the other two meds also have side efects. Most side effects can be managed either by you with over the counter drugs or by your doctor with prescriptions. Unless you have one of the severe side effects, in which case you would seek immediate medical care, if you need help with handling side effects, this is the forum to come to. People here do know how to deal with side effects and are very helpful and supportive.

[hostalavistababy]

The degree to which people experience side effects varies.  Experiencing hemolytic anemia to point where intervention is needed via Procrit or transfusion does not ensure the drugs are working properly.  Low platelets or low ANC requiring Neupogen is no guarantee either.  Blood value are going to drop with everyone on triple much like SOC.  Regardless of blood values there will be physical side effects exclusive to the protease inhibitors and some will suffer more than others.

In my case, I required no helper drugs, tolerated the Incivek, did what was necessary, cleared the virus by 4 weeks and remain UND at wk 18.  It hasn't been easy but it was not debilitating either.  I don't think anyone who goes through triple therapy will say they weren't effected or had no side effects but I can honestly say in my case it was uncomfortable at times but actually quite manageable.  

[pooh55811]

I am 65 years old and I have had Hep C for 30-35 years. My liver biopsy showed Grade 2, Stage 2. So I have some damage but not severe. I was already experiencing some fatigue and muscle and joint aches, which I now think is Hep C related. Before I was diagnosed I thought that was just due to getting older. Now I don't think so. I used to be very active and fit. After I had systemic vasculitis, also most probably due to Hep C, I never got my bounce back. The reason I mention all of this stuff is because I think it probably affects how I feel now (now that I am on treatment). Some of my symptoms were already present to some degree before I even started treatment. I am only 5 weeks into treatment so I can only tell you what I have experienced so far.

Anyway, I personally think I have few side efects and certainly none that could not be managed (so far). I did feel spaced out and a little weak after first starting the meds, espcially the first day. That all went away after a couple of days. I do feel a bit flu like the first couple of days after the injection. Also a slight headache. But tylenol has helped those symptoms. I have had very mild itching and rash, but barely noticeable and Benadryl and hydroxcortisone cream take care of them. I don't feel like running a marathon and I have a lot less motivation and energy to do things, but I am up all day and don't go to bed until after my 10 pm pill. When I say up, I don't mean exercising. I mean I am not in bed. I may be doing light work like the dishes or sweeping or laundry, sitting at the computer, reading, watching DVDs, or shopping, etc. I also drive, go to lectures and concerts, go to my book group, etc. Many people continue working. The worst side effect I have had is the rectal pain. I am dealing with it. I don't like it, but I guess I can live with it another 7 weeks (it is the Incivek). I have no choice, really.

There is a huge list of side effects to the 3 drugs, A lot of peole get a couple of the side effects, like rash and itching, flu like symptoms, fatigue. But some side effects affect very few people.  You won't know which side effects you will get until you are on the drugs. Some people seem to have very few side effects. Some people seem to have severe side effects, but I don't think they are the majority. It just seems that way because people posting here are often looking for help and ideas for treating/solving which ever side effect they happen to have. People who have no side effects are generally not going to post every day that they have no side effects.

My suggestions would be to try to stock up on staples if possible and have  a small supply of items that you may need and may not want to wait until the store opens if you need them in the middle of the night (benadryl, tylenol, lotion, hydrocortisone cream, hemorrhoid cream, some high fat foods, soups, etc.). (I got the hint when I received my first shipment of meds and my pharmacy had enclosed a package each of benadryl, hydrocortisone cream, and hemorrhoid cream.)

I would also suggest you have some back up plans. Have some friends or someone who can help you if you need help the first couple of days until you see how things go. You may be just fine. On the other hand, if you feel like crap you may want someone to help with the kids for a couple of days.

I hoped for the best but I tried to prepare for the worst, just in case. For me, starting the meds was no where near as bad as I envisioned. (Incidentaly, I think we were all apprehensive and feared the worst, so you are not alone in being apprehensive.)

I wish you the very best of luck and success in your treatment.  

[journey91]

How long do you take the incivek? I'm seeing that most symptoms are coming from that, am I correct?

[Lifenet62]

I am on day 10 INCIVEK w Pegysys and Copegus. Stated tx Fri Oct 21. Did 2nd interferon ( pegysys) shot fri 28th. So far so good. No fever a touch of nausea, slight headache. Injection anxety is far worse than reality. A little restless sleep so far.
Still have appetite drink over a gallon of water a day drink one 8oz glass 2% milk in addition to meds and take vit d3 tumeric and alpha lipolic acid plus multi no iron. Tylenol w benedryl = tylenol pm. Take after shot and when restless.
I go day by day. The liver biopsy truly is the only indicator of where your disease really lives.
A helpful friend or church member(s) may come to be a help. We are gere for you. I would not change my decision on treating. God has us all.