Starting triple therapy soon

[Fifi54]

Hi , I am 54, genotype 1a and about to start triple therapy ! I must admit I'm scared of the side effects - but more worried about letting the Hep C virus remain in my body .. I am healthy and am going to try and remain positive ( hard to do when you're vomiting on the bathroom floor for days on end as one of my friends was ) . Has anyone managed to keep exercising and generally get through treatment with not too many side effects . I have been reading a lot of horror stories and I would really like to know if there are any positive , no side effects stories . Also did anyone lose their hair or weight ( worried about my hair - not worried about my weight ) Thank You

[48weeks]

I also live in Delaware now. I had Hep C for almost 40 years. I was a GT 1a, my Vl was slightly under 2,000,000, but after I relapsed on Triple Treatment with Telaprevir it went down to 600,000. It stayed at 6k for 2 years, and then I treated with Harvoni, by itself for 12 weeks. Last June I reached SVR12, and in December I reached SVR24. All I'm saying is see one of the awesome board certified GI's in Dover or NCC and get things started. You are low enough to where by the time you get on Harvoni you will still be pretty easy for that drug to treat you depending on your GT. I would not consider listening to anyone here who tells you not to treat. Best wished to you for putting this behind you, it's a great feeling. I'm ecstatic that I'm over it. I never really exhibited painful symptoms while I had hep C either, and Harvoni was a piece of cake compared to some of the other treatments I went on.

[Delawarewallflower]

I am new to thi forum, however not new to the whole hep c dilemma. 55, white female, have been positive for 35 years. had liver biopsy 1998, went to albert einstein hospital for a year for monitoring, never took treatment of any kind. just did holistic cocktail of milk thistle and things of the like. have been too scared to address my hep c, although it appears to be not causing me any problems per se, I have been pushed by my family members to go on Harvoni. I don't know my genotype currently, but my viral load test last week came back at 148,000 and I have no clue what that really means. good? bad? not so bad? really bad? IDK. my liver enzymes remain in the 20's....never elevated...but I know that isn't a sign of clean bill of health either. would love some feedback. I'm new here. and scared.

[hepc4Sandi]

Hi Delaware, this thread is several years old, it would be best to post a new question at the top.

Your viral load isn't real high, and enzymes are low. You do need to know what your genotype is to know the exact treatment you would be on. Harvoni is great, I have a friend who just finished taking it along with Ribavirin for 12 weeks, and is doing good, so far undetectable.

If you can get the meds, right now is a good time to get treated, do it before your liver has any more damage.

[scottie24]

My neighbor behind me has Hep C.  He got a blood transfusion in the 70s, so that's when he pegs the infection.  He's in his 70s and is now dying from cancer.  A Mexican doctor (he never trusted American doctors) told him ten-twelve years ago, with regards to treatment, "Heck no!  That stuff will kill you.  Don't worry about the Hep C.  Something else will get you first."  If your enzymes are low, don't worry about it, IMO.  Let somebody else be the guinea pig for now.  
Also, google "East germany anti-d Hepatitis C" and look real closely at the charts re: cirrhosis.  Only 4% of women with normal body mass index had developed cirrhosis after 35 years of infection, with no knowledge that they had been infected (so they drank, smoked, etc).

Substitute Ireland for East Germany in the above search and find out that NOT ONE SINGLE infected woman felt ill from Hep C after 35 years' infection, but many started freaking out from fear and anxiety when told they had the disease.  They weren't sick until somebody told them they were.  

Then draw your own conclusions.  The medical journal articles you get from above searches may cost $35 to retrieve, but they are well worth it.

Read an article by UCLA School of Medicine professor emeritus Dr. Koretz, "no benefits possible harms."  Again, google.  "Infection does not necessarily equal (nor in all likelihood will it ever equal) illness."  See also CDC stats: "95% to 99% chance that infected person will die with Hep C, not from it."

Read abstracts on Hep C in 2012 AASLD Liver Meeting.  1 in 160,000 chance of passing it through an act of sexual intercourse.  Plus others re: real life results in treatment, increased likelihood of cirrhosis from treating, etc.

[Dee1956]

Hey there, this is great news to hear! I am so happy for you.  I can't believe it has been a year.
I was like you, I was a real couch potato during the tx.  It takes time to get back to normal.
Again, so happy for you
Dee

[Fifi54]

Hi Everyone , well it's been over a year since I finally decided to treat. I was then advised to wait for incivik to arrive in Australia , then decided to wait until I had an overseas holiday ! So I finally started triple at the beginning if June , I did 12 weeks of incivik ( telaprevir ) which was absolutely horrific. I was nauseous and vomiting most of that time ! I threw up everything I drank but managed ( most of the time ) to keep the food and medication down . I spent most of the 12 weeks in bed or on the couch with a bowl ! I was undetected at 4 weeks and 12 weeks so I finish 24 weeks of tx before Xmas ( yeah !!) The day I finished incivik was amazing - I immediately felt so much better I could not believe it. I am still anaemic ( HB 88, neuts 0.7and all other bloods down) but it is very bearable . My stomach is still acidy and rumble and a bit nauseous but ok most of the time. I am tired and even though I walk my dog and garden every day , I'm slow ! I am so thrilled to be getting through all this - it is so worth it ( even though I really did think the incivik would kill me ) . Anyway that's me , I have been reading a lot of stories and it appears that incivik gives a lot of people a very hard time but also delivers a lot of SVR's !!

[GrammyA]

I have an issue with the fat and found that if I put 2 tablespoons if flax seed meal in a small amount of applesauce it provides a healthy, non- gaggy solution.  Not too tough to take.  I have tried it all - and spent tons of money on those options.  This one seems to work best for me.  Tonight is my 7th shot and I am 1b and undetectable at week 4!!!
Good Luck!

[Idyllic]

Here is a thread that shares various member experience with swimming and the sun.

http://www.medhelp.org/posts/Hepatitis-C/Swimming-/show/1799564#post_8287373

I probably should not say this but if your water aerobics is indoors and your lower body is pretty much what is emerged in water than I would stick with aerobics as long as you can.  I can't think of any physical activity that is easy on the joints where you get a decent work out.

Everyone's experience with the sun and swimming is different and there is no way to predict how you will respond. You will find out lickety split whether your skin can handle the pool or not. The thing with public pools is (to me) they are usually too high in chlorine.

[blue556]

Thank you all for sharing your stories. I am also about to start the triple therapy treatment in the next few weeks. Just like all of you I am also so scared about how I will handle this process. I am a 29 yearold female with no damage. I found out I had this totally by accident, the DRs think I had contracted this when I was a little girl living in another country while being hospitalized for pneumonia. I have a physical job, I love to work out, I am healthy in general but I am not a big foody and hate fatty foods! I really hope to be ok with all of these meds!!! I probably need to start eating more pizzas and calzones!
I am so happy to read all of your positive posts, positive stories, and words of encouragement.  I am so thankful for all of you being here and sharing your journey.

[Fifi54]

Did anyone swim ( in chlorinated pool ) while doing triple tx ? I was wondering if the pool water may make the skin irritations worse ? I do aqua classes 2-3 times a week and was hoping to keep it up during treatment ...

[BoceprevirGal]

  Well, I did 28 weeks of Triple Tx with Victrelis.
I would say the first 6 weeks, and the last 8 weeks werent bad at all, with very little side effects.
  From 8 weeks to 20 weeks, I suffered from
hemolytic anemia, so I was very weak and tired then. I didn't lose any hair, and I gained about 8 pounds, because I was too weak to ride my bike during the anemic weaks. And also, I gained, from eating whole yogurt, with my ribaviran, at 6:30 am, and 10:30 pm, which I would never normally do.
   My last week of Treatment, I began trying to
diet, and again felt sick. I felt like drinking plenty o water, and eating nutritiously, kept the side effects at bay. I also had to avoid the sun, and when I didn't, I got an itchy rash~

[johnny679]

Thanks Robby thats encouraging , I am 34 strong and ready to get rid of this thing had for 25 years I would say as I am haemophiliac , biopsy one year ago showed I have stage 11 fibrosis so time to get started within the next few months

[robby_dc]

I just completed 24 month triple therapy and was worried about starting as well. Ithis first weekend I waited and waited for the misery to begin. But it nerve came I had no side effects except for neotropenia bit just took neupogen for that. The only side effects I got was bone pain from the neupogen other than that didn't notice anything. My doc said a lot of his patients have little side effects. Hood luck buddy

[Fifi54]

Hey there , I have that same feeling about the side effects ( I am a bit worried about Xmas etc though ...  ) Good luck and yes I would delay if I was you , just in case ! Stay in touch and let me know how you are going :)

[johnny679]

Hi I am also about to start the triple therapy in melbourne australia , I am supposed to start next week but I will try and delay my treatment for about 7 weeks . I have a big family wedding next month and i have family staying with me and I need to go overseas for 5 days . To be honest I was going to do all this while in treatment but after reading many comments on this site I will call hospital tomorrow and delay for 7 weeks .
Good Luck I am sure you will be fine , keep postive to be honest I dont think I wil have may side effects if any , just a feeling .

[Fifi54]

I like your answer the best lol - you sound positive , active and getting on with life ! I am definitely going to go into this with a positive frame of mind . This tx is going to prolong my life and make me healthy and happy so I will handle the 24 weeks of tx and then celebrate being free of the virus. Thank you for your support . :)

[Fifi54]

You are all going to make this journey a lot easier thank you . I think support really will help . At the moment I am just waiting on the call ( anywhere from a week to a month ) to say the meds are ready and off I go .... Have you all been honest and told everyone what's up ? I really don't want to tell my 82 year old mum as she will worry about me and honestly I don't think a lot of people ( I know ) would understand the whole hep c / treatment scenario ! Thank You all for your advice and tips and general support :)

[1fish2fish]

  I like your frame of mind, keep positive . I'm the same age as you I'm in week 21 of tx and doing fine. No hair loss no weight loss, really no side effects to speak of so far really good. I'm very active in every way and have not missed a beat due to treatment. Everyone reacts differently but there is a hand full of us who do very well with tx. I was also worried before starting tx much like yourself I kept a positive frame of mind every day and never dwell about feeling down, This past weekend after my Saturday injunction, Sunday morning I felt kinda of crappy. I went outside and split wood for 3 hrs I will not let these drugs change my way of life, only make it better.  Good luck

[1swimmer]

Welcome to our home away from home,
May sound silly but I recommend you get a fridge thermometer. As soon as I started tx, the first worry I had was storing my interferon correctly. I can deal with the physical, uncomfortable stuff, but have discovered I have little tolerance for an unsettled mind. Let your husband support you in handling detailed stuff, and you can focus on you.

Also, i tell people that am taking meds that may make me sick now, in order to secure a healthier future.

I have been able to swim, even with low hgb, but only for short durations. Just getting myself to the club helps my mental state. And I definitely listen to my body; if it says stop, I stop.

You can do this!
C

[Dawn703]

I too had fewer sx than most, not non-existant but not as bad as some. I kept working full time  and overtime this whole summer so far. I managed to keep busy walking as much as possible until my HGB fell into the low 9's. Then my walks got shorter and less frequent. I lost some hair but later in treatment. It has already subsided two weeks after eot and has started growing back. I did loose 30 lbs my first 12 weeks, couldn't hardly eat anything but the 20 grams of fat with the incivek, but my appetite came back after ending incivek. However, I never gained the weight back. This tx is totally doable, and as you said is better than the end result if you don't treat. Good luck and keep us updated with any sx, we all have solutions to most of them.

[willbb]

Not much to add to the good advice above.,so just a welcome to the zoo...

Will

[Fifi54]

Thank You for your reply's everyone. I am in Australia and I don't have a lot of support here ( only my husband and one of my very good friends know about the journey I am about to embark on ). I am still trying to work out what to say to people when they ask me why I am feeling unwell and not joining in my usual activities. I am actually quite scared of the whole tx scenerio but I have had the virus for about 35 years now and I know its time for it to go before it does any damage. ( I have not had any probs apart from elevated liver functions for the last few years - had a biopsy and no damage so far ) Anyway I will stay on this forum and let you know haw I go . I usually bury my head in the sand and hope it will all go away but I think this might just bite me !! Thank You again

[HappyByChoice]

Welcome to the forum!  You're off to a great start... as the best way to alleviate your fears is to educate yourself.  You'll find that there are some very knowledgable and compassionate people here who are more than willing to guide you through every step of your treatment.
I, too, have continued to work full-time while treating.  I'm not exercising quite as much, but still do what I can when I can.
Best of luck to you!

[flcyclist]

No side effects stories??  Not likely hear about zero sx, but the side effects could range from very minor to severe.   This is very individual and hard to predict, but many have been able to manage with good guidance from your doctor and the help of many good people on this forum.  We do understand your anxiety on the challenge you are about to begin.  

Regarding exercising during tx, that can vary, too.  Since fatigue is a very common sx, the other major factor is your Hgb throughout tx.  Since I wasn't anemic, I was able to continue to exercise which had a very positive effect, both mentally and physically during tx.  Just do what you can during tx and don't set the bar too high.  Taking things day by day and getting enough rest is most important.  Good luck to you and let us know how you are doing.  

[jules2551]

I started walking 4 miles per day and lifting light weights before starting tx.  I wanted to get back into shape before %^&* hit the fan.  I am on week 7 of triple tx (Vic) and am still able to work and exercise.  My sx have been minimal compared to others so I feel very fortunate.  But believe me there are some days I just don't want to work out.  And if I can't I go nap instead.  You will know what your body is capable of....just listen to it.

Best of luck!
Jules

[belle19]

hi there, welcome to the forum.  i went thru 48 weeks of tx and finished in may 2012.  i kept working and i went to my cardio classes at the gym 3x/weekly.  however, i was doing low impact.  my hgb was low so i couldn't exercise as hard as normal.  i did my shot on fridays and usually sunday was my down day.  i'd nap and feel low energy.  i'd get emotional over nothing but my family was very supportive.  remember to drink LOTS of water.  it helps with the sx.  good luck to you.  belle