I'm seriously starting to wonder if I made the right choice about treatment. I was very!! healthy prior to starting treatment and now my body is a very messed up to say the least. Will i ever get better?now instead of the virus will I be forever effected by side effects of the treatment drugs (victresis triple)I've put in my system for a " cure". I would be interested in hearing stories of post treatment. Are we nothing more than an experiment? for pharmaceutical profits.? And are these companies then profiting of of our hope Maybe I'm going mad but really starting to question
I'm waiting, I've had this for 35 years and my biopsy's are still good, I just don't like what I hear about this stuff!, If I had bad biopsy results of course I would do it but I'm in no hurry to jump off that cliff yet!
Yes, it is worth it. I was swimming 1 hour/5 times a week and had no symptoms. When my liver enzymes were elevated I asked to redo the labs. this is how I found out about the hep c. Treating with Vic was no picnic, but that part is done. Mushy muscles, itching, fatigue, all post tx. My body is still working toward a healthier state.
3 month post tx: VL not detected
6 month post tx: to be tested on April 8th
What I want, is to know my body is free of this disease. I do not want to worry about an active virus beating up my liver and possibly shortening my life.
My skin took a beating as well, while on tx; maybe some other sx too.
To me, treating was worth it; staying positive here.
I know exactly what you mean! I've been on Triple Therapy for only 7 weeks (41 weeks to go as second time around) and some of the side effects are almost too much to cope with, although I am still able to work 16 hours a week. However, a call from a friend and former colleague put things in perspective for me when she telephoned to see how I was and mentioned her son (only in his twenties) is presently on the liver transplant list. It made me stop and think how lucky I am to be given a chance to address my condition and restore my health. I've carried this nasty virus around for 33 years and enough is enough - war has been declared!
I'm on week 7 also. I feel terrible. I am out of breath all the time. Shot day and the following day are the worst for me. Dr. says that I'm tolerating the drugs well. I don't plan on quitting. Good luck to us all. This is by far the best bet that we have right now.
I was asymptomatic prior to trt, maybe a little more tired than usual some days. Went through 48 wks of SOC and had a few rough patches, fatigue and the mental challenges that go with this long trt. It is now one year at eot and I'm SVR and feel just as good if not better than before trt. I guess I'm one of the lucky ones that had no lingering sx.
I'm glad that these meds are available to allow us to rid ourselves of this hideous virus. The years of trials and the cost of getting these meds approved isn't cheap. I do wish the newer trt without interferon was available for me, but I wasn't willing to wait. So, to answer your question, was it worth it? My answer is YES! I hope your lingering problems resolve over time.
The answer to that is going to be different for everyone. I think that even if you felt "very!! healthy prior to starting treatment" most people really don't have a good idea of what's going on inside their bodies on a metabolic and immunologic level, especially as they grow older. I've noticed that most who comment on this subject -- regardless of which side of the issue they come down on -- really have no evidence one way or the other whether their post-tx side effects were caused by the meds or the fact they carried the virus around in their bodies for so many years or simple aging. Or some combination of the three factors.
The answer is going to become even more 'different for everyone' as more people add a third drug to the mix and different types of drugs are tried for which we may not discover the side effects until years down the line.
I did a short course of PEG/riba ten years ago and remain virus free, so I'm happy, even though I take a few more meds for problems I didn't have back then. I really can't say whether my health would now be better or worse if I hadn't txd, but I'm satisfied with the decision I made and now lead a happy, active life.
I am at the end of week 9 and had two really bad weeks 3 & 8. I was not UND at weeks 4 and 8 so that was a bummer. However, I feel like most this is my chance to see what it feels like to be virus free and to give my liver the best chance of being healthy. I will be 61 this year and am sorry I waited this long but at this stage of the game I can't see doing anything but keeping it moving.
I really feel very bad for those who are facing such life changing side effects and while I have my share and never know when I wake up what will be waiting for me, like losing words from my vocabulary, this rash that seems to have made itself at home inside and outside my body, dry mouth, dry eyes, broken teeth, etc. I really do wish us all the best and here is to SVR! For those having really rought times, please hang on!
I was very!! healthy prior to starting treatment and now my body is a very messed up .
If you had HCV which in time for most if let to do it"s nasty work ..you were not "very healthy" even tho possibly non-sympatomatic
I will let others debate the pros and cons of INF>
I was in a clinical trial for Incivek before it was approved, completed tx in 2009. Would I do it again? Yes, in a heartbeat! I knew I had the virus for more than 10 years before I chose to do tx. I feel very lucky to have gotten into a phase 3 trial, to have gotten the study drug, and now to be cured. Knowing I had the virus for all those years before treating took it's toll on me. I worried about my health all the time. Anyone who saw me would think I was extremely healthy, and I felt just fine...but no one knew what was going on in my liver, just by looking at me.
At almost 4 years post-tx, my health is still excellent, in fact, better than before. I no longer get painful muscle spasms which last for days. During tx I got every side effect in the book, it was miserable, but I knew it was time-limited, and I was fortunate to finish tx at 24 wks.
Hang in there, you can do it. Make sure you have the support you need. If depressed, you might talk to your doc about medication. I took antidepressants during tx then tapered off after I got my SVR report : )
It's not the interferon that's the problem, it's the other stuff that's evil. You listenting out there you nasty Riba? When you get the flu and the chills and the sweats and that jangley feeling it's your body's reaction to the infection which is the naturally produced interferon within you. Interferon is your friend that other carp is the true enemy.
It's a catch 22 isn't it? I was so scared of tx but more scared of dying. I really didn't have a choice. By the time treatment ended, I forgot what it was like to feel normal. I honestly wondered if I would be that way forever.
While I'm only 9 mos SVR, I can say that the side effects are almost none. the problems I deal with now are just from cirrhosis. My hair and nails are healthier, the achy joints are made better w light exercise, and I am awake and ready to embrace another day every morning.
I hope this helps. Treatment is hell. And it can kill the virus. It raged in me for almost 30 years. Gone. Nada. Zip. I would do it again in a heartbeat. Take care. As you can see, we ALL felt the effects and had 2nd doubts...Karen:)
hi please dont give up my hubby on wk20 he was on other tripletx teleprevir and he too was perfectly healthy beforehand only finding out about hepc after routine blood test he had a rough time but getting better after finishing the teleprevir. If you read many posts everone hits the wall at some point, but you were brave enough to start tx so please just think about the future hep c free and healthy keep posting you will find loads of support and advice people are rooting for you and will try to help anyway we can. Soldier on and good luck
I agree with you also. That pretty much wraps it up. I do know for myself if I didn't do the treatment I would of ended up in real bad shape or??? I just think its one of those life choices and both sides have there evils. I agree with figuy it's ribavirin. Stay on course!! I know 2 people who treated back in approx. 2001.
1. 2b did SOS--he's alive and well. But he hated the riba.
2. Was my nephew, don't know geno type but treated 48wks. Cleared. Died 2006--alcohol (choking) don't know correct term.
Neither one that I remember complained about interferon. Don't misunderstand me, I'm sure were all going to have something to complain about. Hang in!! Good luck!!
I dont mean to sound insensitive but a lot of people say they "didnt know" the possibilities of what interferon would do to them and blame big pharma for how they feel post treatment but whose responsibility is it really? If somebody puts anything into there body without doing any research on it...well, whose to blame. Im on treatment right now....week 26...and I can barely walk from the autoimmune Psoriatic arthritis the interferon triggered...but I knew this was a possibility...so I don't play the victim and act like I was a Guinea pig to big pharma....on the contrary...I roll with the punches and try to figure out how I can improve my quality of life rather than feel sorry for myself.
Unless somebody is an underage minor who took interferon from there parents....who has the right to complain? Really? Whoever didnt research the possibilities...its on them. And don't say "my doctor said It would only feel like the flu" so I didnt know what was going to happen. That's what my doc did said....but I still looked it up and saw he was full of...you know what.
I am about 2 months post treatment (failed). I have treated a total of 4 years and 4 months with interferon based modalities. After each one, I quickly returned to my pre-treatment condition, although this time with 5 fewer teeth and a few scratching scars. I am currently training for a marathon and am up to 7 miles every other day. I recommend concentrating on your physical and emotional well-being, Try to lose weight, if that is necessary, try to concentrate on those things that you have control over and try not to stress about those thing that you don't. I know that is easy for me to say, but anyone can do it. It takes dedication. As a young man, I had this notion that I could get into shape and then not have to work so hard. I came to the realization that this was BS and that exercising is for life, but the life is much more enjoyable. Despite all of my failed treatments, my fibrosis level has not gotten worse since I was diagnosed in 1997 or 8, 3 on the Ishack scale.I attribute that to my conditioning, without any scientific reason, just my attitude about it Also, the only thing that you have 100% control over is your attitude, which is something I had to work on also, good luck...Mark
I was put on treatment 6 1/2 yrs ago i went thru the 48 wk treatment and it didnt get rid of the dragon so i asked the doc if a year and a half on it would do it seeing that it gets rid of it while im on treatment he agreed that it may work but to my dismay it did not so he put me in a trial for 48 weeks and that didnt do it. so i waited then i got a call from the trial nurses who said they had new meds and a new trial so i agree so lo and behold out of 300 plus patients me and 1 other guy got the placebo so thats another 48 weeks. at the end of that we were offered the real medicin so i took it and after 48 more weeks we cleared the virus and now after almost 2 yrs it is still gone.
My question is I have not felt right ( dont sleep, i am exhausted all the time, no energy, etc) and was wondering if the meds have done this to me? im physicaly in decent shape but i feel malaise all the time and cannot think clearly or focus and its hard for school seeing i cant remember alot of what i read, Does anyone else have this problem even after being off the meds for awhile? I guess im not alone
Interferon is worth it if you are advanced and need Tx ASAP. With that being said....I will never go back on interferon again. I have had 3 tours of duty with it in the last 3 years (Tx failures). The side effects of the last Tx were twice as bad as the first time. Long term side effects...who knows. A body can only take so much. 3 rounds is enough for me.
When I was diagnosed @ 46 yrs old (thought I was 100% healthy) I was already at late stage 3, so waiting for me really wasn't an option and more than likely HCV would have caused me major problems in the future, but I think desrt said it best.
"I really can't say whether my health would now be better or worse if I hadn't txd, but I'm satisfied with the decision I made"
I appreciate that, I am going to print that out and show it to all the people that told me I had a lousy attitude (which I did). It shows that even a crusty old dog like me can change. Life is much easier with a good attitude...Mark
I'm seriously starting to wonder if I made the right choice about treatment. I was very!! healthy prior to starting treatment "
You may have felt healthy, but you had Hepatitis C. Hep C is a very insidious little virus and can be wreaking havoc on the body even though one has few noticeable symptoms. Feeling very healthy does not equate to no damage to the liver and/or other areas of the body.
"and now my body is a very messed up to say the least."
You are still on treatment. Most of us did not feel great on treatment. Some of us felt like crap. Some of us were very ill on Tx. But we feel better now.
"Will i ever get better?now instead of the virus will I be forever effected by side effects of the treatment drugs (victresis triple)I've put in my system for a " cure"."
Most of us recuperate and feel better after Tx. I had every side effect in the book, practically, and now, 7 months post EOT, I have a little psoriasis left, which is steadily improving, some gum recession, which is greatly improved, and a little hip aching (which was worse before Tx). You will not know exactly how good you will feel until you finish Tx and then wait a few months for the drugs to get out of your system.
"I would be interested in hearing stories of post treatment."
Here is my story:
Pretreatment, I did have several extrahepatic manifestations: Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia; Severe Fatigue; Gradually Increasing Blood Glucose; Unexplained Weight Gain; Sudden Onset Unexplained Allergies and Asthma; Dry Eyes; Dry Skin; Peripheral Neuropathy
Worst Treatment Side Effects: Rash & Itching, Nausea & Bloating & Vomiting, Rectal/Anal issues (crapping shards of glass).
Other Side Effects:
*Cardiovascular: Frequent episodes of rapid heart rate 180 beats per min; swollen ankles and feet
*Dermatological: Rash …..of all descriptions.
*Gastrointestinal: Nausea; Vomiting; Bloating; Diarrhea; Crapping shards of glass; Hemorrhoids
*Hematological: Anemia (Hgb 10.2); Drop in platelets, WBC, and Neutrophils
*Musculo-Skeletal: Muscle and Joint Pain and Aches
*Nervous System: Brain Fog; Tinnitis; Headache; Dizziness; Vertigo; fine motor tremors; Restless Leg Syndrome; Romberg’s Sign (loss of balance when eyes were closed); Hypersensitive sensations like electric current in chest and abdomen; Hypersensitive skin – felt like deer flies biting me and burning and prickling sensation of feet; Balance and Coordination Issues; Heavy Legs
*Ocular: Dry eyes; Vision changes …poorer blurry vision, difficulty focusing
*Respiratory: Sinusitis; Dry cough (continuous while on Incivek); Shortness of Breath
*Fatigue – severe; No Motivation; No Energy; Flu-like Symptoms; Low Grade Fever; Generalized Weakness; Extreme Dry Mouth; Excessive Urination; Urinary Dribbling & Stress Incontinence; Sweating
I did 48 weeks of treatment, 12 weeks of Incivek and 48 weeks of Interferon and Ribavirin. Now, 7 months post treatment, all of my pre-treatment symptoms/problems are completely gone except a little ache in my hips. All of the treatment side effects are gone except as mentioned above (a little psoriasis and some gum recession which are both improving). I feel great. I feel better than I did 20 years ago. I have my life back.
So mine is a major success story. I just wish I had been able to treat 30 years ago so that I could have avoided the that Hep C caused for me. But I never knew I had Hep C until 2 months before I started Tx. At least I was lucky enough to discover the Hep C before my fibrosis progressed to Stage 3 or 4 and before I developed End Stage Liver Disease.
So give yourself a break. You are not going to feel great on treatment. Just try to move forward, finish treatment, and know that you will most likely feel much, much better shortly after completing Tx.
Here's hoping that you will attain SVR, that you will recover fully from your treatment ,and that you will live a long, productive, and happy life.
REALLY!!! Of course it's worth it. Lots of weird medical stuff was starting
to go wrong with me before treatment. Funny thing how all that is gone
after I treated. Yes there are a few different medical things to deal with due
to treatment. But this whole treatment experience has been anything but
easy. I agree with pooh..... Was it worth it for a better quality of life -
You better believe it was.
I think its worth a million dollars to me im taking my last shot of 24 weeks of treatment tomorrow and have been undetectable since week 4 and even on treatment i am starting to feel much better then before treatment i had bad bouts with Vasculitis swollen legs red blotchy spots all up and down my legs very painful my doc told me it would go away once we treat the virus and it did i would do it all over again if i had to i thank god there was a way to treat this virus so i will be around to watch my grand baby grow up
Yes, it's worth it. April will be one year since the end of tx for me. I also did triple with Vic. I had all those thoughts that you do. But just keep on keeping on. I thought about stopping a lot. I felt not so good. Now, when someone talk to me about tx I can,t remember clearly What it was like. My life is back to normal, running a half marathon each month, swimming three times a week. I am still working on endurance,it's been slow to return but it will. I also felt healthy prior to tx, no known SE. But, I knew I was not ok for many years. Now everything on blood work is normal. Hang in there.
Of course you are not alone... but wow did you go thru a he!! of a treatment path!
I hope things get better as time passes but for me as the years have gone by (my 72 weeks of treatment) disability has gotten a bit worse.
I try to stay positive (my therapist is pretty amazed and doesnt know how I do it with how debilitating the chronic fatigue has gotten). I give up all offers of assistance from friends and neighbors and ride bicycle for transport *when snow and ice isnt too heavy! I cant do the 100 miles weekly as I did before and during treatment so... I try in other ways to keep physically active.
The brain fog is really frustrating. I cant concentrate on movies even and that was my major at uni. That is the one love I really miss.
If you do a search for Post-Interferon Syndrome (P.I.S.) you should find some new info as well as other suffering long term.
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