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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
Mary
Best Answer
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
I am only aware of a few people who discontinued the Incivek portion earlier than the 12-weeks due to the rash. Actually, one managed to hang in there the remaining 6 days and the other I think was Lookingforward. She had a bunch of images posted of her rash
Here is a link to a thread:
http://www.medhelp.org/posts/Hepatitis-C/Rash-Report-2---dermatologist/show/1712062#post_7836347
And you can click on her user name to read through her posts. I understand the rash clears up the longer you are off the Incivek so hopefully you will experience relief soon. Hope you receive more posts with factual info & experience. Hang in there !!!
Then there is this:
An additional treatment arm evaluated an 8-week INCIVEK combination treatment (n=364). 72% of patients achieved SVR. However, the 12-week INCIVEK dosing is recommended.
http://www.incivek.com/hcp/efficacy#naive
Here is a link to a thread:
http://www.medhelp.org/posts/Hepatitis-C/Rash-Report-2---dermatologist/show/1712062#post_7836347
And you can click on her user name to read through her posts. I understand the rash clears up the longer you are off the Incivek so hopefully you will experience relief soon. Hope you receive more posts with factual info & experience. Hang in there !!!
Then there is this:
An additional treatment arm evaluated an 8-week INCIVEK combination treatment (n=364). 72% of patients achieved SVR. However, the 12-week INCIVEK dosing is recommended.
http://www.incivek.com/hcp/efficacy#naive
I looked at looking forwards rash pictures yesterday and I knew my rash was worse...the doctor said not to continuing...they wanted to take pictures of my rash and send it to incivek...guess it was way bad...thanks for the 8 week study...
10 days early puts you half way through week 10.
WorkingDog stopped Incivek early, at about week 11. As noted below, he also had to cut some Riba and he stopped all treatment at 19 weeks (if I have his posts figured out correctly). Here is one of his more recent posts:
"i cleared in 19 weeks with incivek to 11 weeks and vl at <43 at 4weeks...i had bad symptoms though..had to stop riba at 4.5 weeks for 10 days and then again at i think 8 weeks for 5 days........
He was Detectable at 4 weeks but less than 43. It appears he took Inc for 11 weeks and then continued Interferon and Riba through week 19. And he did attain SVR.
Here is his May 23 status:
workingdog ... is SVR
Hopefully you will stay Undetectable and attain SVR too. Best of luck.
WorkingDog stopped Incivek early, at about week 11. As noted below, he also had to cut some Riba and he stopped all treatment at 19 weeks (if I have his posts figured out correctly). Here is one of his more recent posts:
"i cleared in 19 weeks with incivek to 11 weeks and vl at <43 at 4weeks...i had bad symptoms though..had to stop riba at 4.5 weeks for 10 days and then again at i think 8 weeks for 5 days........
He was Detectable at 4 weeks but less than 43. It appears he took Inc for 11 weeks and then continued Interferon and Riba through week 19. And he did attain SVR.
Here is his May 23 status:
workingdog ... is SVR
Hopefully you will stay Undetectable and attain SVR too. Best of luck.
i had 10 days of incivek left...pretty sure I was half way through the 11th week...did 11th shot last friday..but thanks for the info..I remain hopeful!
I apologise..you are correct...halfway through 10 week..shot goes ahead of week..not a strong math person
Hi,
I, too, had to stop the incivek at 9.6 weeks due to severe rash. I continued with peg and riba through week 24 although my peg was reduced I think at about week 20 to 135 ml. I completed treatment in early December of 2011. I am SVR. I hope and pray you will be the same. Try not to worry, I think you will be ok. FYI... the rash stayed with me for a long time. I continued to have periodic rashes even after finishing treatment. I had a recurring rash around my neck right up to six months post treatment but haven't seen it since. Best of luck to you dear.
Gerbils
I, too, had to stop the incivek at 9.6 weeks due to severe rash. I continued with peg and riba through week 24 although my peg was reduced I think at about week 20 to 135 ml. I completed treatment in early December of 2011. I am SVR. I hope and pray you will be the same. Try not to worry, I think you will be ok. FYI... the rash stayed with me for a long time. I continued to have periodic rashes even after finishing treatment. I had a recurring rash around my neck right up to six months post treatment but haven't seen it since. Best of luck to you dear.
Gerbils
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!
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!
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
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
No apology necessary. I just wanted you to know I totally understand and empathize! It's a difficult, debilitating side effect. <3
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
Saelon
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
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
Mary
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
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.
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.
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
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.
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
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
G
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