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Hep C Discussion Forum -> On Treatment -> Ugh...a few questions
Post Info TOPIC: Ugh...a few questions
Sed3


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RE: Ugh...a few questions
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Thanks Isis.  I'd call the rash severe and it's spreading.

Here's what was written elsewhere in this forum about stopping Incivik after 8 weeks:

  "And, according to the clinical trial results the overall SVR rates with only 8 weeks of Incivek are still high at 72% for those completing the remainder of the tx."

And elsewhere:

     "My Dr told me that stopping Incivek after 8 weeks only reduced the chances of SVR by about 8%"



__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
Isiscat2011


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Sed:  By reconsider I don't mean defy your doc's orders if he/she is adamant, but sometimes these things are negotiable. 

Doc won't let you stay on if it becomes dangerous, but sometimes they like to keep us comfortable, and can be a bit less concerned about the long term than we, as patients, are. 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
news


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Well, let's see... Extending treatment length because of advanced liver damage is commonplace. In fact it is usually taken into consideration for any new treatment plan. I would say you should go with it. Better safe than sorry. Now for the second part. The all over rash and intense itch is almost certainly from the telaprevir, not the ribavirin. The large patches of rash that sorta' lay under the skin and burn like fire if you try to scratch them are Incivek rash. The RIBA rash looks more like little chickenpox scattered around. Mine never really bunched up. The Incivek rash was usually found on the hips, shoulders, chest and back. But those pesky riba guys will go anywhere.... Even where the sun don't shine. Based on your clean report at four weeks and with the extended peg/riba treatment, you should probably just enjoy the wonderful relief you will get from quitting Incivek. The difference will be fast and impressive. Now for the fact that you can't remember the last question you had, welcome to the dizzy world of treatment. What were we talking about? Alan

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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Isiscat2011


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Sed3 wrote:

Thanks Isis.  I'd call the rash severe and it's spreading.

Here's what was written elsewhere in this forum about stopping Incivik after 8 weeks:

  "And, according to the clinical trial results the overall SVR rates with only 8 weeks of Incivek are still high at 72% for those completing the remainder of the tx."

And elsewhere:

     "My Dr told me that stopping Incivek after 8 weeks only reduced the chances of SVR by about 8%"

The clinical trial stats vary depending on the specific situation (72% is overall), and there are many variables, such as whether you are tx naive, a relapser, or a null responder, and also it can depend on whether you have cirrhosis or not. 

So, this number will not be the same for everyone.  Probably best to determine the number a bit more precisely before deciding. 

But, even assuming an 8% decrease for the sake of argument, increasing the odds of not achieving SVR by 8% is not considered small to many people.  That means 8 more people out of 100 will still have the virus after completing a full course of tx due to those 4 weeks.  Just depends on your perspective.

It kinda sounds like the decision is already made, though.

 



-- Edited by Isiscat2011 on Wednesday 4th of April 2012 01:54:11 AM

__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


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Hi Sed:  Here I go being a nag about taking your Incivek.  If the rash is just keeping you awake but not REALLY severe (like open blisters or covering most of your body for more than a few days at least) then you might want to reconsider going off Incivek early.  The SVR difference between 8 and 12 weeks is fairly substantial (the clinical trials show the exact numbers and we can get you those numbers) and you want to give yourself the best possible chance especially if you are late stage liver disease.

It is a little weird that your doc would tell you to discontinue it unless the rash was really severe and it is also strange that he would tell you there isn't much SVR difference between 8 and 12 weeks. 

I'm pretty sure that 48 weeks is recommended for all people who have cirrhosis (again, this is easy enough to check) but are you sure you even have cirrhosis with no liver biopsy?  I would want to be darn sure before I added another 6 months to tx, after being UND at week 4.

P.S.  If it helps at all, I had a rash over 90% of my body (everything but my face) and it actually did clear.  Took about a week and after that just the occasional  rash blotches.  It looked like measles covered by a sunburn.

 

 



-- Edited by Isiscat2011 on Wednesday 4th of April 2012 01:11:22 AM

__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Sed3


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Hi - sorry to make it a sort of catch-all title, but some things have come up.

I'm type 1B, week 8 on telaprevir, pegasys, and ribavirin.  Undetectable  in week 4.

1 - I haven't had a biopsy, but based on everything else my Doc things I'm f3-f4 - a good amount of fibrosis, possible cirrhosis.  Because of that he wants to extend me to 48 weeks instead of 24.  Does that make sense in light of my undetectable week 4 test?

2 - Has anyone had a severe rash due to the telaprevir/incivik?  He thinks my rash is not from the ribavirin.  So after 8 full weeks he's taking me off the telaprevir, and just ribavirin and pegasys from here out.  He says that that, especially given my week 4 test, there's only a small percentage difference in continuing the telaprivir after 8 weeks (instead of 12).  Since the rash is keeping me up at night, that's fine with me.  

Has anyone encountered this?

I had another question, but I forget what it is.  Sheesh.  Thanks!

3 - Oh, yeah.  Doc told me I was low on potassium and to have a banana or orange juice every day.  I always have a banana every day, but now I'll have 2 or some OJ.   Anyone encounter this??

 

 



-- Edited by Sed3 on Wednesday 4th of April 2012 12:59:25 AM

__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
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