Side effects of pegintron/ribavirin

[eastcoastguy]

I am about to start a 48-week course of treatment for Hep C at the National Institutes of Health in Washington, DC.  I would like to hear from people on this treatment regarding side effects.  How severe and persistent are the flu-like symptoms?  Depression?  Irritability?  For the impacts on mental and psychological well being, is there anything that I can do to minimize them, such as regular massage therapy?  I will be happy to share my experience with this treatment over the coming year.  I can be reached at ***@****   Thanks

[Diane12855]

You're in good company. We have a lot of people at the early stages of treatment on here.
I'm on week 8 of my treatment. The order that my side effects came up was: after first shot, body aches and fever the second day. By the third day just felt fatigued for the rest of that week. Second shot was worse because I had way too many things planned for that weekend, and didn't rest like I should have, so I was pretty wiped out for that whole week. I was still able to go to work... just didn't feel good. All of my aches were easily dealt with by Ibuprofen. I got kind of anemic by the 4th week, and that feels like you are walking around with 20 pound weights on your arms and legs, but I guess my body is compensating because it doesn't feel as bad as it did. I'll find out next week when I get more lab work how that is going.
My ears started ringing a lot in the past couple of weeks which is just an irritation so far. I also get nauseas in the afternoons now... not real bad yet, just enough to make me uncomfortable.

I have 3 pretty good days each week, nothing like before treatment, but good enough to do some extra stuff. The rest of the time it is all I can do to work and fix supper, and the rest of the evening I spend on the couch.

I sometimes get feeling sorry for myself, and think I don't want to feel bad all the time like this, but then I think about all the people on here that I have read about who cleared the virus and after the chemicals were out of their system they felt better than they had in a long time. That reminds me why I'm doing this, and it will be worth it in the long run.

We can do this!!!!

[Vibrant52]

Thanks Bill,
You can see how nervous I am!

[Bill1954]

Hi Vibrant,

There are lots of people in here that will share their experiences with you. I myself am diabetic and have done HCV therapy twice. If you go to the top of the page, click on the green ‘post question’ button, rather than the green ‘post comment’ button at the bottom. The one on the top of the page will let you start a new topic; this one was started in 2002.

--Bill

[Vibrant52]

I am about to start my 48 weeks and is scared to death! Okay questions, do your hair come completely out or just thin? Does the nausea start immediately or later? I can afford to lose a little weight but don't want to, I'm only a size 10 now! Please tell me any other thing I should watch out for. I have done much research on this treatment (pegintron/ribavirin). I'm aware that it's different with different people. Just give me some hard facts that is common in most people.

Vibrant52

[redrodeo]

Yea I noticed the date of the original post. I was wondering what was going on. Good reading anyway
Red

[cgaking]

I am in week 35 of the 48 week treatment of Peginterferon alpha 1a and Ribavirin.  I have not experienced flu like symptoms at all but the other side effects have more than made up for the one that got away...  I have been nauseous since the first week of treatment and have had many rashes, fever sores, bumps, itches all over, blurred vision, raw nasal membranes, bleeding from the nose if I blow it, ears stopped up, flaking of the skin, dizzy, hair loss, jaundice, metal taste in mouth, teeth are extremely sensitive, chest pain, insomnia, muscle aches, joint pains, headaches almost every day, cold sweats and day before yesterday I noticed that inside my mouth behind the right lower rear tooth I had what looked like a lesion.  When I moved my tongue, I could see in the mirror, the underside was lined with blood blisters on both sides. I called the doctor and they instructed me to come to the office for blood test.  It was Friday and they scheduled me to see the doctor Monday afternoon and recommended that I call a Ear, Nose and Throat specialist for an appointment to get their opinion.

I am waiting for Monday to come and Tuesday I have an appointment with the specialist.  I will provide their diagnosis when I get it.  I was told on April 21, 2008 that I had no "detectable" Hepatitus C Virus.  Prior the treatment I had only one goal, to reach that level.  I would have thought my feelings would have been one of extreme relief and happiness.  I told the doctor that I felt like "The operation went perfectly doctor..... but the patient died....."  That is how I feel about the treatment.  The mood swings and side effects have left me spent.

I ran a marathon on May 3, 2006.  That was 26.2 miles of excitement and the pleasure of finishing a goal that started with a quadruple heart bypass, March 3, 2005.  The training and perseverance required to do that should have prepared me for a 48 week treatment for Hepatitus C, but it didn't even come close.

I am sure that hind sight at some future date will change my thoughts on this process but I have never had to face the side effects and mood altering medications this treatment requires.

I can only advise new patients to this process to get totally and completely involved and read everything you can find on the subject.

[R Glass]

Has any one else notice the date on the original Post? It is Aug 26, 2002. That would make it around 5.5 years ago.

[Emilio44]

I'm 5 weeks in to a 48 week tx and at this stage feeling minimal to no sides, the usual fatigue stuff, that can be managed okay. I am working full-time and have a busy family life.  Tx is okay for many people and when I was researching pre tx, all I heard was the bad stuff.  People who have an okay time don't necessarily write about it as much as those who have a hard time, so the literature is tainted in that sense.  I know a least 12/15 people who are in the early stages of tx and most are managing okay.  Your'e not going to fall into a black hole during your tx, life goes on and so will you.  This is really doable mate and I now have hope.  Get yourself as fit as possible, liver friendly diet prior to tx.  There is so much we don't know about this disease and there is no set rule for any of it.  Research and educate yourself, because there are a heap of GP's and specialists who haven't got a clue.  Just following the person in front of them. I guess  Undetectable is fantasitic but not if it means destroying your immune system in the process.  The trick is to get UND and have a healthy as possible immune system post tx.  Everyone's looking at the first 12 weeks, perhaps we need to put some focus on the 12 weeks post tx.  Having no immune system post tx must make us vulnerable to relapse.  I'm on the Roche Polymerase Inhibitor Trial in Australia, which is a worldwide trial with many US based participants as well.  I talk regularly to others on the trial in hepatitis social.  This is a great site for support and education so stick around.  Gods speed my friend. Sorry bout the rave. Regards Emi

[Lady Lauri]

Now to you...your thread and all :)

Welcome here!  Read thru threads here...a lot! All said is needed input. Tx can be h*ll, quite frankly, but it also can not be h*ll. Each person just doesn't know until they are on it. One thing is if your not responding, they will take you off. There are many sides to this, depending on biopsy, damage, other health issue's, etc. The bottom line is the disease is treatable and so many wouldn't be doing it if it didn't work. The risk of after effects, damage is there, also is the chance of cure and better health for many. Here you'll hear from those who ,sadly, do have damage, lasting effects (and sorry to all of you suffering) and from those who achieved SVR and their life is better. Obviously you and your Dr. have decided you can treat. Another poster here often refers to not 'killing yourself for the cure' and I tend agree with that, but like everything in Hep C, all depends on each situation/person.
  I always say prepare for the worst, than your happy when the worst doesn't hit.

Good luck, stick around here thru out, LL

[Lady Lauri]

........I would disagree that therapy did not improve the quality of my life.  There are some deep-down things I  learned about myself and, assuming a good eventual final result, changes my future horizon significantly..............

I very much agree with you, well said! Hep C, tx, this site, people I have met, people I have seen in a different light once I was 'sick', insight into myself, appreciating 'life', others..... I come 'out' of this a different person and tho I wasn't bad before :)....a better person!

Loved your post!

LL

[Lady Lauri]

hsma.....your tx was rough, mine (many here) was also very rough, never felt good thru out, but I am very glad I did it, being Hep free, my liver repairing and so on. While some do come out with damage, lasting effects, it's a risk we all have to decide to take. Your right, all should research well before making their own choice on tx. You don't say if you got SVR (cure) and I suspect not as your Dr. took you off of meds twice??? That is not good in this treatment! HE should have known that! I'll also guess you were Geno 1, with 50% chance of SVR, tho if one is UND at week 4, it's a greater chance. I am sorry you had such a hard time. Without much info. on you....if you have liver damage, please take care of yourself and perhaps don't rule out new drugs coming out soon, shorter time, etc.

Wish you well, LL

[feartheferon]

Treatment sucks from the git go. Example: Shots, I found that shooting in my stomach was the least painful, 2 days after I would have a huge red round rash during the rest of the week and the spot was hot like it was running a fever. After many shots I started getting hard knots or lumps in my abdomen. It would turn purple after a few days and then it was time for another shot, I had a complet lumped swollen abdomen and yes I would get the flu like 4 days after the shot and it lasted 2 days to the T..My skin turned to leather with bumps all over me, rashes broke out in many places, Sores on my tongue and nasua. Constant headaces, Unable to sleep more than 2 or 3 hours at a time. As months went on I became more and more unstable, weird thoughts running thru your mind, night terrors, ringing in the ears, all my joints were hurting so bad it mimicked RA, and I still have achy joints. All the hair fell off my arms and legs, Lots fell out on top also where it was see thru to my scalp, growing back a bit now. I'm diabetic now and have high blood pressure probably as a result of the 60lbs I put on without any reason. My eyes burned and hurt terribly, Blurred vision sometimes so bad I couldn't see.. Had dry mouth so bad I'd drink a couple of gallons of soft drinks a day and water..Made my teeth hurt for no reason..My hair all over took on a different texture, was course and thick now its soft and light. I lived with this they say for probably 20 years and I was healthy as a horse. After discovering this and going through this treatment I may have gotten rid of the h-c but I have more problems now than ever, I feel like a 90 year old man that got hit by a garbage truck, even though I just turned 41..If your going for it, then welcome to our hell! I hope you do better than we have.

god bless you..
joey

[Frank J. Perrotta]

I was on treatment for 72 weeks and it was hell from week one. Two years after and I am suffering so severely that I was finally declared disabled by SSID.

I was super healthy living with Hep C for 20 years and if I could take back time I would NEVER treat (knowing what I know now).

I am cured of Hep C but will probably never recover from treatment.

good luck,
frank

[triggertime]

I did the pegintron/riba for 48 weeks. then the infergen/riba for 48 weeks. Its tough. no way around it. the 1 thing that got me through all of it was a GOOD friend to try to understand what I was going through. to hold my hand so to speak. You will find many good friends HERE.

[toughluck]

I am starting the Vertex trial in May 2008 man I read these posts and get the chills, hope it is better than you guys had it.

[FlGuy]

Treatment is not a picnic, nor is it a bad county song that comes to life.  I treated twice, but both times recovered from the assault of the meds. People react differently and recover, or not, differently and have varying outcomes. You just don't know.  I would disagree that therapy did not improve the quality of my life.  There are some deep-down things I  learned about myself and, assuming a good eventual final result, changes my future horizon significantly.  But, the meds do suck.

[hsmawmaw]

I am 52 years old and I started treatment for hepatis C in January 2007.  During the first 4 weeks, I had flue like symptoms, more fatigue, loss of appetite and lost weight. I also had to be put on procrit shots every week because my ANA was affected. I was sick through out my hole treatment and had to be taken off my medicine twice for a period of 2 weeks each time and eventually taken off my medicine at 38 weeks due to problems from it.  I lost my hair and a total of 32 pounds.  I lost hearing in my right ear, I now have sytemic lupus, and arthritis from my medicine. If all these things had been explained to me better by my doctor, I would have never taken this medicine.  Please do alot of research on this before taking it as I now have found out that this medicine is not as effective as I was told and that side effects don't always go away after treatment stops.  Therpy doesn't ever improve your quality of life and makes your life terrible while on this medicine.