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taken off incivek because of rash

Today my Doc immediately took me off incivek and sent me to a dermatologist. I have literally been at the doctor all day. It is 10 days early but, I am UND as of 8  and 10 weeks. They told me I had enough in me and to continue Tx. Has anyone had this experience? And if so did you maintain SVR? The rash got much worse this past weekend.
Mary
Best Answer
1972385 tn?1343827076
Back in March of this year I was in my 10th week when I got the rash.Started on my upper back and latter started to spread.I saw my dr and he told me to discontinue the Incevic.He asked me if he wanted me to be admitted to the hospital after seeing my rash and I said no.I want to go home and continue with the peg/rib.A week later I came down with Anaphilaxia and was rushed to the hospital.Stopped all meds.After 3 days I went home and saw my dr 3 weeks later for a follow-up.He said my test results were great.I am UND.My next test is in 6 months.My rash was from head to foot.It was cold outside and I would walk outside shirtless to cool down before bed to sleep.I iced down during the day.Hopefully you and I and others were on the tx long enough to be SVR.I hope we do.MIKE
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Avatar universal
Sadly, I got the rash immediately and before I even cleared my 1st week, I was covered from armpits to toenails w itchy, blistering rash.  I'm the one who, after 3 days, insisted on continuing thru the weekend.  My doc was right...shoulda quit then, but really motivated to stay on Incivek.  I have hard, itchy bumps over 75% of my body and it is now 3 days after quitting.  I have an appt w dermatologist tomorrow.  I did Peg/Riba about 5 yrs ago and that year wasn't as bad as 1 week on Incivek.  The docs do tend to sugarcoat, but I think part of it may be they haven't seen the side effects.  Fortunately, I have a really up-to-date doc that really listens to his patients.  I only wish there was another alternative
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Avatar universal
so wierd I got the rash right off the start of incivek.Now im 4 wks on and no more rash. I take an antihistimine,2creams and benedryl. It sucked big time. I was teetering on the verge of having to stop but rash actually subsided.so all keep head up,as I too get wayyyyy down in the dumps and want to stop so friggin bad.but I know I have to stick it out! Good luck and prayers to all! Fukhepc
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Avatar universal
Michaell, the same thing happened to me at about the same duration of my treatment.  I started getting the rash about the end of my 10th week of taking incivek and the rash just exploded within a few days.  I kept taking the meds for another week before I realized that things weren't going to get better and it was time to see my doctor.  He immediately took me off incivek and told me to continue the ribavirin and pegasys.  Within 4 days my entire body was consumed by the rash and after calling my doctor, he had me admitted to the hospital.  My arms and hands were swollen significantly and  I was seen by a team of liver specialists as well as a couple of dermatologists.  After 2 days on IV drip I was discharged with some prescription steroid ointments and anti-itch capsules.  I started applying the ointment immediately and have seen some significant improvement with my rash.  However, now the rash has spread to my inner thighs as well as my penis (argh!).  The ointment does appear to be dealing with the virus and I think I may be good in about a week or so.  My legs and feet are really swollen at this time but I'm sure that will be temporary.
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1972385 tn?1343827076
I understand that feeling.A had the brain freeze,couldn't think straight.To deal with the itch ask you're dr for something and also keeping cool or cold will deaden the itch.A lot of members have great advice for the itch.Keep an eye on your rash.I read you are still on 2 drug tx(peg/riba,I hope).Good for you.You survived the Incevic.Now on to SVR.Just think,you will be back to your old (young)self when this is over.Give it time though for the drugs to leave your body.
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Avatar universal
Thx so much for that info..truly gives me hope! Congratulations Dee on SVR!!!! I feel so lucky to have the gift of kicking this virus out of my body!
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Avatar universal
Went to dermatologist...gave me another shot that wasn't a steroid ...he reassurred me that it is normal for the rash to continue spreading for a few days after cessation of incivek...I feel better...think I freaked out yesterday...I am about as normal as be expected as I am sure you understand...Thx for the great feedback...this site really helps!
Helpful - 0
317787 tn?1473358451
Hello, 3 of the people who stopped early have responded, there is another I know of MsDragonSlayer also had to stop tx completely by 11 weeks.  6 months after finishing she is also SVR.  There was another woman on the web that had to stop early and she is SVR.  As a prior relapser I think you will do well.  You were very close to the 10 weeks.  I am a prior relapser and am UND at 3 months post
Best of luck to you
Dee
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Avatar universal
I agree with you; I can't imagine taking them both. You wouldn't switch now even if they did that (which I don't think anyone has done that). It is either Incivek or Victrelis. You are far enough in to the treatment that you are committed at this point. Your rash is a big deal and you need to be very careful and stay in close contact with your doctor. Ceanothus is right the effects of incivek will continue for probably at least several days after you stop taking it so if the Dr. says stop you should follow that instruction. The rash can start to accelerate rapidly. Take care.  I am sorry you have the rash but please keep us posted so we know you are ok.
G
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Avatar universal
I am a relapser ..SOC is incivek...I am not sure about switching but, I yhink in Atlanta they are starting a clinical trial using both drugs...can't imagine
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Avatar universal
Thats why I picked th Victrelis can they switch you?  I dont know much about switching meds on treatment I just know that rash is like the devil from what I am reading.  If its an option you may want to do that I have to take it 7 months instead of the 6 on the inv like you guys are taking.
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Avatar universal
Thx saelon..I am actually going back to doctor in the morning..but I feel better knowing what you shared..better not take chances though..I'll still go to doc...let you know what happens....all the itching came back eeek!! rash red and spreading...not a pretty sight...hope you are feeling ok
Helpful - 0
1840891 tn?1431547793
It is really common for the rash to continue getting worse for a little while after stopping the Incivek. I only had a mild rash but I also found it got worse for the first 5 days after Incivek, and then started getting better gradually. Actually, all of my incivek symptoms got worse for the first 5 days before getting better, but then I was rewarded at the 7 day point by feeling not just better, but downright GREAT for at least 10 days. Eventually the interferon/ribavirin side effects caught up with me and that great feeling turned back to crap, so be ready for the possibility of feeling great for a little while so you'll be able to take good advantage of that period before it fades away again.

Remember that my experiences did not include a really severe rash, so if you get worse for a few days that could be much more dangerous than it was for me. I think you should keep in close contact with your treating physicians until it is really getting settled down. 
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Avatar universal
I didnt mean to press best answer..I am feeling very weird..do you go to a dermatologist? before you went into shock? I got a steroid shot yesterday...today I feel worse...hmmm
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Avatar universal
rash continues to spread without incivek....ah well..unpredictable
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thx billy..and you have SVR..whoohoo!
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Avatar universal
Saelon...got a steroid shot, and a big jar of steroid cream...itching is less today...I feel positive and I appreciate all the kind words posted here...there is truly strength in numbers!
Mary
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190885 tn?1333025891
i stopped the incivek at 11 weeks two days...i wish i had stopped it at 10 weeks...my rash was not good at all among other things...i'm 7 months post tx and still have skin trouble...not real bad though...some folks are just more sensitive to these drugs.....some of that rash is most likely from riba...you may not get rid of it during tx...or even for some time after tx...hang in there..its great to beat the hep....good luck....billy
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1840891 tn?1431547793
Oh Mary, I'm so sorry to hear that the rash got so extreme, but I'm very glad that you got to the doctor quickly and that he paid attention right away. Some people have had their doctors "pooh-pooh" their rash for way too long. Good for you having that great attitude too - I'm sure you are right and it will all work out with SVR at the end. Did you get some steroid cream yet for the rash yet? It will almost certainly need that before it will improve. I'm sending best wishes and good healing thoughts your way!
Saelon
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1995824 tn?1330379049
No apology necessary. I just wanted you to know I totally understand and empathize! It's a difficult, debilitating side effect. <3
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Avatar universal
thanks..I was thinking today that maybe there is a reason these sides occur in some people and that I can just keep doing what I am doing and it will turn out exactly the way it is supposed to...somehow maybe my body decided I didn't need anymore incivek..who knows..I trust the process
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Avatar universal
I sorry I compared our suffering...thx for clarifying...i should not compare
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1116669 tn?1269143266
I had to stop the Incivek between 9 and 10 weeks although I stayed on the interferon/Ribo. Also my Ribo was decreased secondary to a very devitalizing anemia largely intractable to Procrit and a progressive rash. I have cirrhosis and was a previous null (just below a 2 log HCV decrease) responder times 2 over the past 20 years. I was an EVR at 2 weeks and undetectable at 12 and 24 this time around. I finish up in July with earnest hope!!.....While my history is against me I doubt the early Incivek d/c affected my SVT potential as per my early response. Why not have a periodic PCR to mitigate your anxiety...My best. d
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1995824 tn?1330379049
I sent you a note before I saw this post. I am so happy that you will be seeing a dermatologist.
Just as a note, most of my pictures were taken around the 22nd of March and I'd had The Rash for about six weeks at that point. It really began to flare between week 8 and 9 of incivek. I continued with the Incivek for two more weeks and the rash worsened much more than what shows in the pictures. I was too sick with it to post any more.  Some of the rash didn't show in the picture resolution - I had a 'sunburn' type rash which literally burned my skin everywhere but my face. I have peeled and am still peeling and flaking all over every inch of skin on my body. I have to wear loose clothing because if the material is snug on my skin, the rash will flare up again.

I have one more pretty graphic pic of my leg that I may post for reference too. It was taken a week AFTER I stopped Incivek - The Rash continued to progress for another two weeks until I started prednisone.

I am glad that your doctor has been responsive to you!

I have faith that the Incivek did its heavy hitting and that we will both SVR!
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