For Everyone on tx or Thinkink of Doing it.

[Tippyclubb]

Four years ago I participated in a trail which was Teleprevir Phase ll, which is now know as Incivek.  I received all three meds Teleprevir, Riba and Interferon as this trial was not blinded.  I was fortunate that my vl was UND in two weeks and was able to do tx for only six months.  This was the reason for the trial to see if people could remain UND doing tx for six months.  Up until then people had to treat for a year.  

I must say those six months were the worst of my life.  I had many issues while on tx.  I had the rash from hell, thyroid problems, my liver enzymes were in the 300's almost the entire time on tx.  Towards the end of tx I develop PCT which is a skin condition that's causes open sores and blisters, and lost half of my hair.  My hgb fell so low I was taken off of Riba for 11 weeks out of 6 months.  The ringing in the ears almost drove me mad.  I had stabbing knife eye pain for about a month that was very painful and had to wear a eye patch, in addition to the 100 degree fever nightly for 3 months.  Anything that could go wrong on tx, did for me.  

Was it worth it?  Absolutely as I am still UND today and liver enzymes in normal range.  

When tx was done I did not recover quickly like some do.  It took 4-5 months for my hair to return.  It took 3-4 months before I regained a small amount of energy.  I had 3 phlebotomies trying to control the PCT which did not work and had to take Chloroquine pills which eventually did stop the blisters.  It was a good 8-9 months before I felt  almost normal again.  It was a year before  my energy level finally returned.

Do I have any long lasting side effect from tx?  Yes, I do.  I still get ringing in the ears, but not as bad like it was when on tx.  Definitely have some cognitive issues and not as sharp as I use to be.  Its hard to explain.

With that being said I have NO regrets doing tx.  The 2 remaining issues are minor in comparison to what could have happened to my liver if I did not do tx.  I am lucky to be alive and healthy.

I want you all to know tx is very hard but just hang in there and no matter how sick you feel NEVER lose sight of the prize.  The prize will be SVR.  Once that happens you will never have to worry again.  

My thoughts and prayers are with you and please stay focused on the prize.  When you achieve it --years from now you'll look bad at the whole ordeal as being a bad dream.

Good luck and wishing SVR to all of you.

[SYDSDAD1111]

I had similar experiences with the incivek tx(48 wks) everything except the pct (se below) this was my 3rd go around with interferon, I definitely am not the same 1.5 yrs post,I am svr ,I don't regret doing as I waited 10 yrs for something new but with the new tx's around the corner I do not recommend the risks. The fact that you cleared one disease and picked up another is an example of the toxicities these drugs have,they screw up the immune system and some never achieve balance again.I was reading about the pct just today with another member.....good grief sorry this happened. this is what got my attention

Typically, patients who are ultimately diagnosed with PCT first seek treatment following the development photosensitivities in the form of blisters and erosions on commonly exposed areas of the skin. This is usually observed in the face, hands, forearms, and lower legs. It heals slowly and with scarring. Though blisters are the most common skin manifestations of PCT, other skin manifestations like hyperpigmentation (as if they are getting a tan) and hypertrichosis (mainly on top of the cheeks) also occur. PCT is a chronic condition, with external symptoms often subsiding and recurring as a result of a number of factors. In addition to the symptomatic manifestation of the disease in the skin, chronic liver problems are extremely common in patients with the sporadic form of PCT. These include hepatic fibrosis (scarring of the liver), cirrhosis, and inflammation.

[pooh55811]

Congratulations on attaining SVR. (I know, a late congratulations, but a congratulations just the same.)

You endured several serious side effects while on Tx but you persevered and won the prize. Hopefully the couple of remaining issues will subside as time goes by.

I also wish to wholeheartedly thank you for persevering with that trial. Because of  you and other pioneers like you, those of us being treated after your trial was over, were able to treat with the more effective drug combination (Inf., Riba, and a Protease Inhibitor) and attain SVR. I, for one, an very grateful to you.

I also treated with Inf., Riba, and Incivek and had a lot of rather unpleasant side effects (understatement, LOL, sides from hell is more like it) but I would endure all of it again in a heartbeat in order to attain SVR and be free of Hepatitis C. I, too, attained SVR, thanks to you and people like you.

Thank you so much for posting. Best of luck for the future.

[nzkiwilife]

I'm sorry your tx was so full of awful sx.
It's great that you are cured. I hope that last couple will of sx will gradually wane and disappear.
I just want to thank you for perservering with that trial.
Because of you and others, it allows people like me to only do 6months of the triple therapy rather than 11 months.  

[Fmulder]

Better treatments are on the horizon that don't involve injections or riba,  Pills only with little sides, I would suggest waiting unless your on deaths door.