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Hep C Discussion Forum -> On Treatment -> Incivek Rash
Post Info TOPIC: Incivek Rash
zuzusfam


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RE: Incivek Rash
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DJ wrote:

I hope you are feeling better. Almost a week since stopping, so I hope you are feeling relief.

 I am starting to feel better. Still lots of itching and the rash isn't as angry looking. I think it will take a little while before the rash completely disappears since there was so much of it. But like I said, it is getting better and that what is important.

smile



__________________

53 y.o. female, diagnosed in 1998. Started tx Oct 8th 2012. Genotype 1a. VL 600,000 before treatment; VL 98 11/12; UND 12/12. Reduced interferon to 135mcg 12/12. 12/17/12 stopped incivek due to rash. 12/20/12 Stopped all meds due to sx
DJ


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I hope you are feeling better. Almost a week since stopping, so I hope you are feeling relief.

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Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
Mary Jane


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Hey Julie, sorry to hear about the " rash' taking over your body..  I hope you get relief soon.  I understand about wanting " normal" ..  wishing you all the best ... MJ



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Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
JIme


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Hey Julie, take a well deserved break and then see what's next. Saty as healthy as you can so you'll be ready for the next go.  Good luck.



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Daook


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I really didn't get the rash too bad but that s--t knocked me on my arse. I'm glad those twelve weeks are over.

Now it's turning into an emotional roller coaster.

:)



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Geno 1a, second time around, stable viral load since 1973, timing is right for new therapy
hrsetrdr


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I knew that Incivek was bad news, was thankful to have been on Victrelis but felt horrible about how those who were using Incivek suffered.

Just yesterday I read the following on hepatitis-central.com:

"Vertex's Hepatitis C Drug Receives Another Blow With FDA Warning

Published December 19, 2012

Dow Jones Newswires

The Food and Drug Administration on Wednesday placed a new label on Vertex Pharmaceuticals Inc.'s (VRTX) hepatitis C drug Incivek, warning patients that the drug has caused fatal skin rashes in some patients.

Two patients died after developing severe skin rashes while taking Incivek, used to treat the viral liver disease, the FDA said. The warning label, known as a black box warning for its prominent placement and black border, is the most serious warning issued by the regulator, and is a further blow to Vertex's hepatitis C program.

Continue reading this entire article:http://www.foxbusiness.com/news/2012/12/19/vertex-hepatitis-c-drug-receives-another-blow-with-fda-warning/ "

Fatal skin rash?   Good Lord, and I thought that peginterferon was pure-evil poison.    I hope that the "oral only" regimens being tested will be taking a less toxic approach to cure.

 



__________________

"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
wilsondog


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I had the exact same reaction on Insivek and was taken off 4 days before I was to finish the 12 weeks.  I continued with treatment (Riba and Interfuron), but was also on Prednesone to kill the allergic reaction.  If you look at my posts you'll see the nightmare that evolved from it all.  I am almost 6 months post-treatment (SVR so far, so good!) But I'm still struggling with residual stuff, some of which was directly related to that damn rash!  I too would have my flare-ups around 3:00 each afternoon once the major rash was under control, but I stayed on Benedryl and a nightime antihystimine long after I finished the Prednesone.  This is serious business and doesn't leave the system quickly AND may cause other issues in the long run so don't ignore a rash that progresses or changes.  



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wilsondog
marktrux


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DJ wrote:

Sorry, I have a question. Is the rash issue something to do with Incivek only? Or if you are on the two medicine (peginterferon and ribavirin) do you also get rashes?

I am so sorry you went through such a bad time of it. Sounds like a nightmare!



-- Edited by DJ on Monday 24th of December 2012 08:41:04 PM

 Both peg and ribaviran can cause rash. Peg is usually more localized around injection site and usually more of an iratation than rash. Ribarash can be more troublesome. I had to stop treatment last time due to the ribarash. This time I have it also, but i'm forcing myself to not quit. I'd hoped it would go away when i finished the incivek, I guess the incivek rash did clear up but i'm still left  with the ribarash. I have several RX lotions, potions and creams but they don't clear it up, just make it more tolerable. Not everyone is affected by them though thankfully.



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KCCO

 

 
mallani


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Hi Julie, Just a thought. I have read reports of changing from Incivek to Victrelis due to the Inciv rash. It seems a shame to completely stop Rx when you have your Undet. and wait for new drugs. Having been on a PI, you will find it difficult to get on a trial. Perhaps it's worth discussing with your doctor. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
zuzusfam


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I am looking forward to letting my body heal and get back to what it knew as "normal." The doctor and I also talked about new drugs and injection free interferon. I will still be checking in at times. Thanks for understanding! Love you all!!



__________________

53 y.o. female, diagnosed in 1998. Started tx Oct 8th 2012. Genotype 1a. VL 600,000 before treatment; VL 98 11/12; UND 12/12. Reduced interferon to 135mcg 12/12. 12/17/12 stopped incivek due to rash. 12/20/12 Stopped all meds due to sx
Bouba


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Yes, Deb

Incivek rash could be the one of the SX reasons to halt treatment...

You have to take preventive measures not to get to that -  apply moisturizing lotions (I use Neutrogena) at least twice a day, cream liquid soap (like Dove),

drink a lot of water to wash out toxins.

Interferon can also cause kinda burning skin sensation and redness but its different from Incivek rash. Look up in a search box for pictures.

 



__________________

58 yo male, HCV since 1981. Gen 1B (IL28B, CT). Diagnosed 1999,  VL before tx 100'000. Biopsy A2, F3 fibrosis. Naive, SOT (with Incivek) Oct 26, 2012. UND @ week 4, 12, 18, 24, UND 12 and 24 weeks post-RX
Biggyb


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Oh well Julie, new medicine is coming soon. Good luck.



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
DJ


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Sorry, I have a question. Is the rash issue something to do with Incivek only? Or if you are on the two medicine (peginterferon and ribavirin) do you also get rashes?

I am so sorry you went through such a bad time of it. Sounds like a nightmare!



-- Edited by DJ on Monday 24th of December 2012 08:41:04 PM

__________________

Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
zuzusfam


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Went to see doctor today. Am being taken off treatment due to side effects. Told to take it easy and let my body heal; doc was surprised at how my rash looked and my week 3,4 and 8 peg injection sites; vl in 3 months (20% chance I still may be SVR. Who knows?) Woke up with NO TEMP today - first time in about 10 days. Yea me! smile If rash isn't gone by mid-January, I am to see a dermatologist.



-- Edited by zuzusfam on Monday 24th of December 2012 06:44:55 PM

__________________

53 y.o. female, diagnosed in 1998. Started tx Oct 8th 2012. Genotype 1a. VL 600,000 before treatment; VL 98 11/12; UND 12/12. Reduced interferon to 135mcg 12/12. 12/17/12 stopped incivek due to rash. 12/20/12 Stopped all meds due to sx
zuzusfam


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Instead of putting my cream on each spot, it would be easier and less time consuming if I bathed in it. It is literally all over my body. It's not on the soles of my feet thank God! I am still drinking tons of water. The hydroxyzine pills they gave me seem to work very well. I take 2 at night for the sedative effect. smile

I am keeping track of my fevers also so when I see the doc, I can let him know that info as well. (Never over 100.4 but I know when I have one!)



__________________

53 y.o. female, diagnosed in 1998. Started tx Oct 8th 2012. Genotype 1a. VL 600,000 before treatment; VL 98 11/12; UND 12/12. Reduced interferon to 135mcg 12/12. 12/17/12 stopped incivek due to rash. 12/20/12 Stopped all meds due to sx
Bouba


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Incivek is know to be quite toxic. Do not forget to drink a lot to wash out toxins. This may reduce rash risk as well.



__________________

58 yo male, HCV since 1981. Gen 1B (IL28B, CT). Diagnosed 1999,  VL before tx 100'000. Biopsy A2, F3 fibrosis. Naive, SOT (with Incivek) Oct 26, 2012. UND @ week 4, 12, 18, 24, UND 12 and 24 weeks post-RX
Daook


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This is what I've been doing about the rash:

-Like Gatekeep, I also am using Hydroxyzine at 6pm and it works along with Zolpidem(Ambien) and Melatonin at 9pm to sleep. I now get my sleep. Very happy about that and can function during the day.

-I also use the Aveeno cream in the shower. Do not rough up rash areas, only rub it on and rinse it off.

-I also use Betamethasone DP prescription cream. I keep putting it on each spot and it keeps going away but re-pops up somewhere else. This cream works good for me. Rash seems to be in retreat.

I hope this helps you out.

Good luck!

 

 

 



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Geno 1a, second time around, stable viral load since 1973, timing is right for new therapy
gatekeep


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I was in the same boat. I was a day away from stoping per. MD. I thought I was going out of my mind. I also was on Hydroxzine it work but once it takes hold of the itch it feels burned. Night was the worst for me. I did Eucitrin calming bath, aveno cream and hydrocortisone on the hot spots right before sleep. Stay calm try not to itch( yeah right!) and tranquilizers are your friend. Stevens syndrome is deadly! Think of the big picture and hang in there! God Bless...

__________________

25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24
zuzusfam


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[quote="karentaliesin"]ody) wasnt zuzusfam  taken off the tele early , for this reason, 

On Thursday afternoon, I ended up in the ER because of the rash. (I had stopped the incivek on Monday because of the rash) The med staff at the ER were very good but none had ever seen a rash like I have. They contacted my hep doc's office and I am off all meds until Monday when I go back to see the doctor. In the ER, I received an IV with benedryl and something else. (I think it was pepsid. I knew what it was before I started typing lol). The staff was also going to give me a steriod but when they spoke with my doctor's office, the office said no. The reason I ended up in the ER was that around 2 p.m. on Thursday, my arms started to itch, burn and hurt like crazy. I tried everything I have in the house to stop it but nothing helped. (One of the methods I used was slapping my forearms. I now have bruises.) I was screaming and crying because I was sooo miserable. About 3, I told my husband that I needed to go to the ER. Beore I was discharged, the ER doc said that I have to see a doctor EVERY DAY beccause the rash could turn into something that is really bad. He said the name of the syndrome but once again, I don't remember what it is.

On Friday, I followed up with my doctor's office and saw the RN. While I was there, I got an rx for hydroxyzine hcl 25mg tabs. I take 1 for itching, 2 for sedation every 4-6 hours. I start itching around the 4 hour mark, btw. I follow up with the doctor on Monday. It will be interesting to hear what the doctor has to say about this whole thing.

The doctors need to put more emphasis on the rash sx. When I started to get the rash, I thought "oh well, just a sx of the tele." I should have let my team know. Hindsight is 20/20 and I am a little mad at myself for not being more vocal about how bad the rash actually is. I wish the pharma people would have pictures of the rash with a caption "If your rash looks like this, go to the doctor." I had no way of knowing what is considered bad except when the doctor said "if it's on your face, you need to stop taking the tele." I have also heard and read that the rash and tele will be out of my system in about a week. I am not going to hold my breath on that one.

I can tell the tele is leaving though, because my head is a somewhat clearer and I don't "feel" like a walking zombie. I am glad to be off meds even if it's only for a few days. I am starting to wonder if I am not the best candidate for tx.  This has been very tough going for me and my family. It has been hard to stay positive and I have cried more this past week than I have in the last 6 months. (Mostly on Thursday because of the itching. I was crying in the ER in front of the doctor who had a snow white beard, was a little portly and wore a red long sleeved t-shirt under his scrubs. I don't like crying in front of Santa.) But...today is a new day and we will see what it will bring. xxoo



__________________

53 y.o. female, diagnosed in 1998. Started tx Oct 8th 2012. Genotype 1a. VL 600,000 before treatment; VL 98 11/12; UND 12/12. Reduced interferon to 135mcg 12/12. 12/17/12 stopped incivek due to rash. 12/20/12 Stopped all meds due to sx
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