Just about to start new treatment Teleprevir

Question

Hi everyone,

My name is Anita and I was on treatment about 2 years ago (Pegasys)and about to embark on the new Teleprevir on July 25th.  I was just wondering  if anyone has any tips or recommendations to do to prepare for this.  I understand that rashes are very common so I am going to make sure to stay out of the sun and get some cotton clothes to endure the heat of the summer.  I am pretty nervous, to say the least.  But I hear great success stories and I am praying mine will be too. :-)  I am stage 4 Hep C, with stage 4 cirrhosis. 

Thanks soo much, Anita

starshine1ca · Answer

thank you sooo much Pam and you surely do give me great hope, knowing your success! I am so thrilled for you! Last treatment my specialist wanted me to do 72 weeks but my provincial govt denied the request, twice. :-(  I know in my heart I would not be where I am today if they would have allowed it.  

They told me that they are going  to see me every  2 weeks as I  am the first in the clinic to try the new drug so they want to keep a close eye.  Glad to hear that! :-)  I am just on the Pegasys for the first 4 weeks, and then they start me on the bocepravir.  So I am yet to know the side effects of the new drug.  

Thank you soo much for your reply.

starshine1ca · Answer

You surely have endured alot and you are in my prayers that you are able to treat with the new drug soon and beat this!  God surely wants you here for a long time as you were surely blessed with a new liver.  What an inspiration you are!  Will it be much longer before it is available for you?

starshine1ca · Answer

Ohhh thank you do much Will for reminding me to get some atarax...yes, that worked well for the rashes last time. Forgot about that! I will ask my doctor next week so I will have them on hand in case. :-)

starshine1ca · Answer

I have to agree with you...I am going to just follow the procedure as prescribed. I remember my friend Dave was doing double shots of interferon, at the advice of his doctor and he is not here today so I sure don't want to chance any problems.  First shot, he called me and was crawling on the floor to get to the bathroom, it hit him so hard. Interferon is pretty potent.  

I am taking Vitamin D daily as well as my 3 cups of coffee.  Enjoy them! :-)
Thank you for those links!

Sincerely, starshine

starshine1ca · Answer

Sorry for the slow response...it took me an additional few months to get on the new treatment...yes, last treatment I became undetectable at week 24.  Back then my viral load as 13,000,000.  I won't know what it is now until next Tuesday, hopefully.   Hope it's less this time and will help me to speed up the time I do become undetectable. *fingers crossed"

burned74 · Answer

Will makes some great points and I would add that I would never change my treatment based upon the advice of someone in this forum.

However, I would look at the ideas presented here, research the actual studies, check with my doctor and then make decisions regarding my own treatment.

For me, I have researched the Vit D study and the coffee study and it looks like they might increase my chances a little. (FYI My viral load declined for 10 million to 400 thousand my first try with Peg and Riba)
 
As for the "every 5 day Peg" at the beginning of treatment (induction therapy), here are links to the studies that I have seen which would lead me to believe that they might increase MY chances of SVR if taken with Incivek. The theory is to hit the virus as hard as possible at the beginning or treatment and reduce the chances of resistant virons.


http://www.natap.org/2011/HCV/052411_01.htm


http://www.natap.org/2006/AASLD/AASLD_42.htm

willbb · Answer

To;burned 74 &.starshine

I would agree with the vit D and the coffee  . and I know in the past that if  you failed  SOC   tweaking dosage of INF/RIBA was a successful alternative for many...however because these P.I.:s are very powerful meds in their own right I would be reluctant to step too far outside protocol...For someone that stated to have a significant drop in HGB .early and then add . the P.I...you could get into problems.

This is just my opinion..especially early on in this when there is really no data on how that would affect results anyway.
Others may disagree ...its just my own thoughts.

Will

paen53 · Answer

Best wishes, Anita, as you start your upcoming tx later this month. I, too, am a stage 4 reached SVR after 72 weeks of enhanced tx (2009-2010). Things are looking better and better for those of us with cirrhosis with the new drugs, as well as a more guided therapy for those of us with advanced liver disease. 

Has your team given your guidelines for when labs will be run and what their protocol is as far as rescue drugs? Just a thought since I remember that knowing this going into tx eliminated many time-consuming questions and debates when time was of the essence for a decision once tx had started. 

Here's to an RVR, SVR and mild sx for you!  Pam

burned74 · Answer

Here are a few little  things I have picked up from studies I have seen over the years.I am also a non responder to Peg and Riba and  I am starting Tx in Sep or Oct with Incivek

Vitamin D 2000 mg/day
3 cups of coffee a day.
start Riba 2 weeks early
take first 7 shots of Peg 5 days apart rather than 7days apart.

wguimb · Answer

My Hep doctor at Baylor College of Medicine has starting treating some of his patients with a drug called INCIVEK and he is having 100% und after treatment.  I am excited and have asked if I could get the treatment.. Over the last 7 years I failed all three of my attempts with Pegasys and that goes with that. I was stage 4 Hep C 1b with stage 4 cirrhosis and tried all the treatments but failed.  So when I was laying in the hospital one night swelling up huge cause my organs were starting to die.,. God gave me grace and a directed donation to me which bypasses the waiting line.  It's been three years since the transplant and my little organ is working good.  However, I still had HCV (last check was 30 million count.) So I am wanting it bad.  Good luck on your results starshine1ca

22hamilton · Answer

We will be cheering you on, I know how it is to lose people-lost my sister in feb to HCC.
Best of Luck
Paul

willbb · Answer

Sorry to hear of your friend.. doing treatment in his memory is a nice touch ..and  I imagine he will be rooting you on .  :)
I left you a note...I guess we are sorta neighbors   :) keep in touch

Will

spectda · Answer

Hi Anita-
It looks like you became und last time you treated, is that correct and what week did you become und? Relapsers have a very good chance of success when a PI is added. 

Welcome back and good luck to you on this next attempt. Many of the people who were on the forum last time you treated are still here. 
-Dave

starshine1ca · Answer

Thank you so much Will.  I was just going through all my old posts back when I was on treatment before.  I remember this wonderful forum really helped me tremendously through the days.  I was really fortunate with the old treatment with minimal rashes so who's to say.  If I am careful and stay out of that sun as much as I can...I may be one of the fortunate to not get any rash.  No sense trying to worry about something that may never happen.   I tend to do that, when my mind is not occupied.. :-)  

Last treatment I lost a good friend to the dragon and I am going to do this tx with a vengeance in his memory.  Perhaps he can give me the strength I need to beat this once and for all!  He used to be a member of this forum also. 

Thank you for welcoming me back and hopefully I can pass on the kindness to another.

Sincerely, Anita

willbb · Answer

Hi Anita and welcome to  the forum. Congrats on getting started again and you are right that tela(incivek) seems to be having good results.

As you have treated before you would have some idea how your body reacted to INF/RiBA  and adding the third drug may add some new niceties to the mix.  Rash is one of the known sx. of Incivek. however in most it is manageable , There have been some folks here needed something for it..either a steroid crea .the anti-histamine  Atar ax..and others may chime in as to what has worked for them.

It is normal to be nervous when starting ...we all are....

Again welcome and feel free to ask any other questiond you may have..

Good Luck

Will