Hi all, I am 6 months into 48 week tx with telaprevir, and did have a serious skin reaction. Articles like this helped me keep my docs (and myself) up to date with the seriousness of the situation-- I was actually the one who informed my doc of the black box warning and got him to monitor me (and others) more closely on that issue. I appreciate the information, even though it is admittedly scarry at times, and makes me rethink my decision to take SOC..... however, the train has left the station, I was undie at 4 and 12, and am anxiously awaiting my 6 mo viral load results..... Kramer thanks for keeping us so informed....

I had every one of the listed side-effects..

Nausea/vomiting
Change in ability to taste
Rash/blisters
Skin or mouth sores
Itching
Red, swollen, itchy or teary eyes
Hemorrhoids
Discomfort, burning, or itching around the anus
Dizziness/shortness of breath
Tiredness/weakness

But no fatal skin reactions....obviously ;-)

Treatment was NO fun, but now I'm rid of HCV, so it was worth it.
If I could have, I would have waited for the new drugs coming on the market, but after waiting three years for Telaprevir that was no longer a good option.

The article is honest, unlike this doctor who I went to see, because he advertises as "The Gut Whisperer" and I thought he would be compassionate. He told me TX was so safe that he would put his grandmother on it. Look at him, his grandmother has to be at least 85 or 90 and he wants to make her suffer for a year when she may only have a couple years left???

http://gutwhisperer.com

http://gutwhisperer.com/MeetTheTeam.aspx?details=MEET_THE_TEAM_DR_KARNAM

As for the dark side, every day has a night. Closing our eyes doesn't make it go away. The truth sets you free. I'm just betting that Dr Karnam would not have mentioned the sides, he would have depended on me to read the insert. I'm one of those sensitive people, I got an all day headache and puffy eyes from eating what was supposed to be an MSG free stirfry last Saturday.

http://www.youtube.com/watch?feature=player_embedded&v=OZBKfmgWInk#!

HCV can be manageable if people are willing to clean up their act and eliminate other liver toxins from their diet, their mind, and environment. The liver is capable of managing a certain amount of toxins. The American Diet and way of living is overloaded with toxins. If you can stop smoking, drinking, doing drugs, eating junk foods and processed foods with chemical additives, spraying toxins in your home and yard, using commercial products full of toxins, etc, then you can expect to live a long life. Oh, you have to get rid of toxic thoughts and emotions as well. Find some happy thoughts, watch comedies, laugh yourself healthy.

Norm Cousins did that....
http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/mindbodyandspirit/humor-therapy

Like I said! All this information was out there, your doctor failed to inform you, don't try to blame the treatment!

I had every last one of these side effects and let me tell you they are more than disturbing!! I am still waiting for some of them to go away...Fuck!!

Telaprevir is associated with some disturbing side effects, including:

Nausea/vomiting
Change in ability to taste
Rash/blisters
Skin or mouth sores
Itching
Red, swollen, itchy or teary eyes
Hemorrhoids
Discomfort, burning, or itching around the anus
Dizziness/shortness of breath
Tiredness/weakness

Knowledge is power. Always. Burying one's head in the sand does not usually lead one to the best decision...

You are incorrect Stormin!

Most of the info in the article came out after approval and initial widespread use of Telaprevir...The FDA's Black Box warning it only came out recently so, check the facts first...

HANK

If I really understood what this drug was going to do to me...I never would have done it. Knowledge is power.

You guys, and especially ImKramer: I realize that the treatments are hard to do and that Telaprevir , like all other drugs, has it's dark side. But I just felt like nobody would chose to take the treatments unless they had to. That was my point. And I know that I'll do treatments if it will prevent me from having to go through chemo for a cancerous tumor again or having to go through transplant and it's drugs ever again. I didn't mean to offend anyone. Marilyn

No problem Marilyn I can't imagine your stress. As always I wish you all the best. :^)

Marilyn, I feel for you, I really do. But it seems that there are still some doctors who are ill informed that are recommending triple to those who can wait.

I was going to do triple and spent months researching and reading everything I could find. That is how I was ultimately able to avoid triple and do my trial. I am sorry you don't have that option.

I wish you all the luck in the world. We will all be here to support you through your tx...

Marilyn, you did say you were going to take Victrelis? From what I have read and heard the side effects are easier on Vic than Telaprevir if that helps any....

Hank, I had skin problems before treatment, now I don't! If the treatment was so bad it would be pulled. Poeple will find something wrong with the new drugs too!

Have they updated comparisons between the 2 current PIs yet in terms of efficacy, side effect profiles and adverse events? My guess is that Boceprevir would come out ahead all things considered.

ecc- as of less than a year ago there was no study that compared the two. I've since lost interest in these drugs and haven't really been following them. But I find it unlikely. Who would pay for such study considering both drugs are rapidly becoming obsolete?