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Hep C Discussion Forum -> On Treatment -> Just an update and thank you!
Post Info TOPIC: Just an update and thank you!
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RE: Just an update and thank you!
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This is such an important thread. Isiscat mentions the overwhelming urge to succeed and achieve SVR, which is human nature in so many challenges. But we have to remind ourselves that we are truly playing with fire. And each of us has a different level of tolerance to this fire. 

I am so happy to hear your ol' man is feeling better and that the rash is beginning to subside. Misery sucks. I worried about him a lot. I hope he gets better real soon. And although it is nobody's business, we are all interested in any decisions he may make about the future.

I still say you two are heroes. Good luck and please stay in touch.

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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sandypsych wrote:

I guess the moral of the story is... this is a difficult set of medications to take, and you need to be stong as a bull to get through it.  BUT, when it gets bad, don't ignore it and see your doctor.  

Thank you for updating us, and what you wrote above is so important.  I know from personal experience how hard it is to tell your doc about the problems b/c the single minded drive to get through the tx and reach SVR, (which is what we need to get through the tx) can also become overpowering and even destructive.  The "failure is not an option" feeling is intense and can be exacerbated by the drugs for people who are on them. 

Allergic and extreme adverse reactions do not always happen right away. There is also a cumulative effect to the tx and once our bodies reach a toxic threshold the drugs can do harm rather than good. Unfortunately, nobody seems to be able to predict if or when this will happen, but it seems to depend on a complex set of factors like genetics, body chemistry, and our own individual systems.

So, that is my message too.  Give your tx 110%, but also respect that these drugs can actually be dangerous, keep balancing the risks against the possible benefits, and contact medical help when you think you are really in trouble.  Okay...stepping off my soapbox now.  doh



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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.
sandypsych


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Just to update and thank everyone who helped with my husband stopping the Incivek.  We saw the doctor yesterday, and first she told us that the rash was the incivek, but the rest of his symptoms (short of breath, exhaustion, and fluid retention) was either congestive heart failure, or acute liver failure.  YIKES!  But she had not heard of DRESS, or considered that it was a reaction to medication.  Luckily, we say hubby's primary doctor, who diagnosed him with an acute allergic reaction to the medication and placed him on steroids.  Within 24 hours he is feeling better, though still not great. But his energy has returned, he is no longer short of breath and his rash is slowly subsiding.

So thanks to all who encouraged (even strongly suggested!biggrin) that we get into a doctor and see a dermatologist.  This regime is so new to so many doctors, that it helps to have some knowledge and information to bring them. 

I guess the moral of the story is... this is a difficult set of medications to take, and you need to be stong as a bull to get through it.  BUT, when it gets bad, don't ignore it and see your doctor.  Don't ignore this rash, it can become quite dangerous if not monitored. 



__________________

Hubby profile:  Genotype 1a.  Hep C since late 70's.  Cirrhosis.   Interon/Riba 2x.  Incivek/interf/riba:  Und at 8 weeks, but had to stop due to DRESS syndome.  Olysio/Sovaldi started 6/18/2014.  Cleared virus 11/05/2014
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