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1637811 tn?1300370376

Starting Telaprevir Trial. Very scared =(

I was recently diagnosed with Hep C genotype 1 and just received an information pack from the hospital outlining a Telaprevir trial (coupled with pegylated intereron alfa-2a and ribavirin) that is starting soon.

I have only started reading about the available treatments and side effects and I am very worried about participating in the trial (if any!).
I have read many comments from people who experience a horrible rash. Is it very visible? Does it leave scars? And what helps to ease it?

I am very ignorant on this subject =( I have only just turned 20 last month, I live away from home and I have no one to turn to for advice about my condition. I would really appreciate any tips or feed back from anyone who has gone through or is going through a similar treatment/trial.
18 Responses
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Avatar universal
also,
vertex has programs to help people with the cost of meds... check their web site.
don't know if this includes Russia, but you could check it out, if you decide to wait.
j
Helpful - 0
Avatar universal
Hi Aia,

I went through 12 weeks with inf/riba and did not have a 2 log drop so was pulled off treatment.  My sides were mild.. but I did get on an antidepressant (celexa) cause I knew that depression was a serious side.  I never even knew I was on celexa and only felt mildly "blue" a couple of times.

You can find the same info the doc reads , re: sides etc, at:\
https://www.incivek.com/?cid=20177&gclid=CMOmgbv_zKkCFcrDKgodBC5hNQ

If you are in good health with minimal liver damage you might consider waiting.
whatever you decide, you will be fine.  
j
Helpful - 0
Avatar universal
I started Telaprevir a week ago, with pegasys and ribavirin.  Felt very bad 24 to 48 hours after first injection- high temp and flu like symptoms- settled down now feel ok.
This is my 3rd go at treatment so I feel like a veteran now. Luckily! I have never had any bad side effects apart from last week. Maybe it is a sign this time it might work. I will see at week 4 when they do a viral load. The way I see it, you must give the treatment a chance if you do get sid effects your doc will help.
Helpful - 0
1637811 tn?1300370376
Hello everyone! I know its been a while, but I have finally started a trial treatment.
Unfortunately its not the one I thought I was going to do, I didn't get accepted into the Telaprevir trial =(

Instead I have started on ANA598, which is in phase 2 and has a 50/50 chance of being a placebo. Its coupled with the standard treatment, so I thought even if I don't get the study drug I can still see how the standard treatment goes.

Its been exactly one week since I've started taking the medication and the rash that I dreaded has arrived! I am itchy everywhere and have an even coverage of small red dots ALL OVER my body!

Can anyone recommend a cream or something I could use before I go to see the doctor again next week?

Also any feedback on this trial would be great? I really did just agree to do this because it was the only thing the hospital was offering me at that moment and I got sick of waiting around for something to come up, and now I'm starting to regret my lack of knowledge on this new drug.
Helpful - 0
Avatar universal
the trial comparing twice a day telaprevir vs 3X a day telaprevir is the only trial presently recruiting that i would consider.   after you are accepted into the trial you might want to express your concerns about the rash to the coordinator. perhaps the coordinator might want to start you on a drug to deal with the rash before the rash starts.  on this board there was a report that fair skin people seems to have the worst rash.  wishing you the best.
eric
Helpful - 0
1637811 tn?1300370376
Thank you so much for your replies!

It makes me feel a lot better knowing that there are experienced people out there that are willing to talk me through this!
It may sound cliche, but the comfort of knowing you aren't the only one, is priceless.

I will post a new reply as soon as I begin the trial =) fingers crossed it all goes well

Aia.
Helpful - 0
683664 tn?1330966324
I was concerned about the possibility of depression, after reading the drug info, because I'd had problems with depression in the past.  The psychological effects were one of my biggest concerns going into tx.  I was not on antidepressants at the start of tx, but within the first few weeks my care team responded to my reports of feeling angry and irritable by prescribing AD's.  This really helped me, and at some point farther down the road, we increased the dose.  I stayed on the AD's for a few months after finishing tx and then tapered myself off them.

I agree with Will, a support group sounds like a really good idea.  You will need to be able to talk about how you're feeling, and it will be good to have others sharing the experience to talk to.  Although I did not go to a support group, I found this forum in my first month of tx, and the help I got here was invaluable.  Reading what others wrote, and being able to ask questions about symptoms, was so very useful.

I agree that having a good attitude is a great way to start!  And it feels so good to beat the virus, and to know that your liver is healing.  Best of luck moving forward, do keep us posted on your progress.

Lapis
Helpful - 0
Avatar universal

  Good luck going forward in the trial. Some folks, as lapis has mentioned suffer with different degrees of depression at times  while treating,however many do not.Very often in a trial they offer the services of a physiatrist and /or antidepressants (if needed) as part of the treatment regime.You may want to inquire about this.

A support group is always a good thing ...also if needed and there are lots of good people here to help .

All the best....sounds like you have a good attitude going in.

WILL
Helpful - 0
1637811 tn?1300370376
Thank you for your good wishes Will.

I have been looking into the drugs a lot more extensively over the last few days, and been considering all your comments and I believe that it will be worth a try.

Lapis, I will be receiving the same treatment as you! (the same one that you have mentioned Eric, I will be placed in either group A which receives the twice daily dose or group B which receives it every 8 hours/3 times daily)

So your comment was very helpful! The skin rash is my biggest concern because it would impact on my job and I am scared that it will be visible.
I believe that if my mind knows that this treatment will help me in the long run then I will be able to cope with any side effects. I have never been afraid of pain or discomfort so the physical aspect of it does not worry me (8 weeks does not sound like a very long time!) as much as the emotional.

It concerns me that you say you suffered depression, even with the support of your family because I have chosen not to tell mine.
Would joining a support group within the hospital be worthwhile?
Helpful - 0
Avatar universal
i read about a trial that compares telaprevir dosing at twice a day versus the three doses each day.  if that is the trial you are considering you know that you will be getting the real drug and not a placebo.  this forum has many informed members that can provide helpful information for whatever you decide.
blessings
eric
Helpful - 0
683664 tn?1330966324
I completed tx in spring 2009, and was SVR at one year (will be tested again next month).  I was in a clinical trial with Tela, Interferon, and Ribavirin, completing tx at 24 wks.  In my trial experience, I was given the Tela for the first 8 wks.  As I approached the 8-wk mark, my skin got super dry, like sandpaper, sore to touch, and reddened in the trunk area.  Since the trial was blinded, I didn't "know" that I was getting the Tela, but believed that I was.  It was uncomfortable and hard to moisturize, but that was about the worst of it in my case.  Oh, and the sun brought out red spots on my skin, it felt like I would burn very easily, so I really limited sun exposure, wearing long sleeves, etc.

You asked, "would the tx itself be harmful to my body?"  Have you read the information about the drugs you would be taking?  There are so many possible effects to these tx drugs, and each of us just has to make our best decision.  I am quite a bit older than you (late 50's) and I had some definite challenges during tx, but I am very grateful to be cleared of the virus.

This tx can be expensive.  I received excellent care as a trial participant, though no rescue drugs were given.  My most significant side effects, at least as it affected my daily life, were the anemia and depression.  Still, I made it through, with lots of support from my family and care team.

Please let me know what other questions you have.  Glad to be a support for you.

Lapis
Helpful - 0
Avatar universal

  The fact you only have mild Stage 1  scarring to your liver means that you would certainly have more time to wait to treat and the amount of damage that would happen until the new meds are avail.would most likely be insignificant.

On he other hand...as you mentioned it is economically beneficial to enter a trial as usually all the expense is absorber by the drug company.

Treatment is not generally considered harmful to the body,however side effects  do vary in severity from one person to the next.

Good luck with whatever you decide...

WILL
Helpful - 0
1637811 tn?1300370376
I have thought about waiting for better treatments to become available, but at the same time I want to do everything I can to treat the virus before it causes any more damage.

My doctor told me my liver is at stage 1 with some scarring.

Also I believe that I have had Hep C ever since I was born (as this was when I had a blood transfusion in Russia) so I am a bit apprehensive about waiting any longer.

The fact that the trial is free is a big factor as well because I have no extra money to spend on medications :(

If the side effects of this treatment are bearable and do not last for a pro-longed period of time after the trial then I don't see any harm of trying? If it doesn't work then I could wait for the next round of more advanced treatments?

Would the treatment itself be harmful to my body?

(thank you so much for your replies so far!)
Helpful - 0
Avatar universal
i recall that in the phase 3 trials with telaprevir the rash was less problematic than in the earlier trials, perhaps the trial coordinators were more aggressive with antihistamines and other drugs.  i read on this board that lighter skinned folks seemed to have more problems with the rash.   Before treatment i would find out how much scarring the liver has.  It is expressed on a scale of 1 to 4 with stage 4 being the worst and indicating cirrhosis. personally if i had very little scaring i would choose not treat. i would monitor my condition closely with help of a doctor. better drug combos are coming.
Helpful - 0
Avatar universal
No..thats not right I dont think..its a combination of the tela and the interferon thats shortens the treatment time...but like i said, I dont know nothing..but these ppl do. Ok..im really confused. I thought that the telaprevir was new along with the boceprevir. Maybe it is, just in trials. I think thats right. See, I dont know nothing...lol..but I learned alot..wtf? Just if you do comeback, you can get the right info..ive not even been to my first doc, but I really know alot considering. But even if it is a shorter time, still treating is probably fairly risky and it could be very benefiscial to wait for some newer "things" drugs, whatever to come out if your liver isnt in bad shape and again with your age..I would find out. The biopsy is the an important factor in this.
Helpful - 0
Avatar universal
  The ppl on this forum, alot of them anyways have very good information and I would definately listen and hear their advice before I started a trial. From what ive learned the side effects of the interferon could be bad for some, and for others, not to bad, it just depends on you. But there are new drugs coming out that are gonna be much better in a few years so..by what ive learned on this site..I would wait if I could. Ive heard trials are good in the fact that they can be free or much better than paying for your treatment...but I would defiantely get some good advice from these ppl first. Im new to this to and im so glad I run into this forum. They have helped me alot, and im going to see my first doctor in may. Have you had a biopsy done and what stage are you. Most ppl dont treat until its getting more progressed cause of the risks and sides of the interferon that hopefully will not be needed with the new drugs. I hope im right by that...but these ppl will defianetly get you straight, I really cant believe how much ive learned and hadnt been to the first hep doc, just regular doc, and she said, you do know alot. I learned every bit of it here. You seem so young and I hope you do make it back to learn somethings and get good advice and support from many many ppl that have done the treatments..these are literally the veterans and they know whats up.
Helpful - 0
Avatar universal
i agree with willbb.   did your physician tell you what stage your liver is at?   i have had this virus for 30 years and now have cirrhosis.
Helpful - 0
Avatar universal

Hi there...I have not personally done Telaprevir..so others hopfully will chime in on their experience with that.

I was wondering tho ..you mentioned you are only 20 yrs.old,and HCV is for the most part a very slow moving disease,with damage to the liver most often taking many years to develop  and often decades,therefore  was wondering why it was suggested to you to treat now in a trial. If possible it could be beneficial for you to wait  and treat with better drugs once they have bee approved and on the market for awhile.

  Always a  personal decision tho ..to be made with the guidance of your doctor.

  Good luck..

WILL
Helpful - 0
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