Rash is out of control!

[MsDragonSlayer]

I finally got a steroid cream for this rash that now covers my entire body,(except my face and genitals.) I started using it this afternoon. I am starting my 11th week shot tonight. I have to inject it give it into a rash. I am freaking out. Does anyone know how long it may take for the rash to subside. I am trying to not throw in the towel. I am at my VERY worst and I need HELP !!!!!!!!

[kallenC]

I developed the rash and it actually went into a severe DRESS syndrome reaction which put me in the hospital with 105 temperature and I had basically a sunburn all over and the rash, all my skin peeled off after.  This was at week 10 on Incivek.  The dr. stopped all 3 meds and put me on prednizone which stopped the fever, although the rash took a few weeks to go away.  It's been 2 and a half weeks and while the rash is pretty much cleared up, I still itch all over from time to time.  I also went to Derm. to get the topical steroid, which helped the most.  I've been on that for about 5 days and, the clearing has really accelerated.  I went to my Dr. today and i am still undetectable, and he is starting me back on Ribavirin and Pegys.-praying that the rash does not return.  I'm done with the Incivek, since I had such a severe reaction, will not go back on that, but got through 10 of 12 weeks, so hopefully it will be enough, now will complete 12 wks of Riba and Peg.  I would recommend going to the derm. early to treat the rash before it gets out of control.

[Lindsaylin33]

How long b4 any rashes go away after incivek tx is over? I have red blotches on my stomach my thighs and itching like crazy plus burning all over my arms elbows legs even hands it's crazy.Will it get better I'm into 12 wks and 2 dys thanks?.

[flcyclist]

I was diagnosed with Pityriasis rosea which covered my entire back and part of my arms, legs and chest.  It was intense and something had to be done.  The doc suggested the medrol dose pack (methylprednisolone) and it quickly brought things under control and have remained that way.  I hope it makes a difference for you as well.  

[MsDragonSlayer]

Thanks Dear,
Feeling much better, scared to jump back on, but I will.  I pray it was the Incevek that got me this time. I will start back on the final leg Sunday night. I wonder if 1 day is long enough for me to have this 7 day steroid out of my body? Guess I should call the doc...again!
peace,
carolyn  

[mremeet]

Sorry I missed your post earlier. I went through what you're going through right now back in 2006. I was one of the first to receive Incivek with IFN and riba during the "Prove 1" drug trial for Incivek + SOC. Back then, Incivek was called VX-950 and then later Telaprevir - but it's the same drug you're taking now. I suggest you read the post I made below and then search through my old posts about rash; there are many to choose from. You can learn alot of about what's happening to you right now by doing so.

Bottomline? Don't quit unless you absolutely have to. Go in for the kill while you still can. The oral steroid (I presume prednisone?) you're taking should straighten the rash out to manageable levels. I skipped a dose of IFN and drastically lowered my riba dose as well and yet still SVR'ed later. Being cured has changed my life, all the suffering and struggle was worth it. You can hang in there too, it just requires "determination." Don't give up...

http://tinyurl.com/d533hk3

[MsDragonSlayer]

Hey Everyone!
Today there is finally a noticeable difference in my rash.  I am on steroids oral( thats why i had to stop the peg/riba)
Also on 50 mg benadryl every 6 hours and ice packs.
I was taken off the incivek 2 weeks early and I will start back up on treatment and soon as I get through this 7 day steroid pack.

I was gonna keep this to myself and a sister on here, but i figured the rest of ya might get a kick out of this too!

  Another weird sx:  Thought I had gone through menopause 8 months ago...  well...when the rash came so did my period, tomorrow will be day 7 for that too.  When my husband and I went to see my doctor, the doctor offered to shoot me for him...haha.

Guess i need to keep an eye on anemia now! lol
carolyn

[Lifenet62]

thinking of you being pain free today dear Carolyn......

[redsurfer]

i had the same rash.. was hospitalized 2wice ... had to take hydrozine and use the creem .. no sleep... couldnt even wear shoes ..my skin was all swollen and it was like lizard skin i could hardly get the needle thru it ...but week 10 it got a little better.. one week after finish incivek.. it was almost gone.. such a huge relief i feel almost human now and my skin feels normal...week 19 !! i hope you are feeling better!! hang in there

[flcyclist]

Carolyn, sounds like you and the doc have a good plan.  Hope with dropping the INC, the rash will subside and you'll begin to feel better soon.  Inf/Riba won't be a breeze, but hope you can tolerate for the remainder of trt.    Also hope you can get back on track quickly.  Best wishes to you.

[MsDragonSlayer]

Hey everyone, I am not restarting incivek. I will restart the ribo soon, injections I do Wednesday evenings, so hopefully Ill pick it back up maybe even tomorrow. Today I am starting to show signs of improvement except I am extremely dehydrated, water doesn't seem to help it.

We decided to stop everything including the magic mouthwash and the
Pozac too...mistake...big mistake.

The Prozac for me is necessary! It truly helps me to keep the nerves at bay and keep those ungodly smells and tastes from over powering everything.

And yes, we reduced the ribo to half at first, but there was no change in 48 hours and since it was a Saturday and I was so scared we just shut it down. I am hoping tomorrow I can start back up on the ribo, along with my other rescue drugs.

Thank you all for your time and concern, you have really helped me through this weekend,
Big love to you all!
Carolyn

[SusieS2010]

I didn't read this entire thread but the part I did read where your doc says if your rash improves you can start up again, is worrying me. Once you stop Incivek you must not go on it again. Since you've finished 11 weeks, I bet stopping that drug a week early won't hurt you. But please do not stop and start. Have you called the nurse's line? They should be able to guide you.

[Dee1956]

Still rooting for you, I hope that you will be ale to start Riba again this week and thaten injections on Friday.  I had a friend who went through something this severe, she had to be transfused 3 times and took two weeks off of everything.  She was on a triple trial back in 2008.  While she did finish up with the 48 weeks there were alot of stops does reductions, hospital visits and 2 years later she is still SVR.  I wish you the best
Dee

[willbb]

Stopping INCI    somewhat early would seem good strategy at this point in light of this rash.however  it is odd that they stopped the other two .especially INF. which  could very well  adveresly  affect overall outcome and may have nothing at all to do with the rash..

Agree with the others  to  get another opinion if at all possible .before you are due to do another Inf. shot..

Good luck
Will

[spectda]

It's a shame that this got so out of control. A doctor prescribing Incivek should understand the potential for severe rash and how they will handle prior to tx. I think he really mishandled it and I feel badly for you.

I also wonder as flcyclist mentioned if it is necessary for you to stop treatment altogether and would want a second opinion ASAP. Difficult to do while in your condition but It would be a shame for this potentially successful tx to end in this manner. Is your doctor a hepatologist? Was he involved with any of the trials? Maybe you should speak to the advice line at vertex about what is going on.

Good luck, I hope things improve for you quickly.
Dave

[researchmonkey326]

I had that needle thing after showers too. OTC made things worse.  A lot of the advice on here is good for people experiencing a mild rash but not nearly what you need at this point.  I hope you don't have the scalp rash that I had.  It was one of the worst things that I have ever experienced- horrible.  My thoughts are with you as I know how awful it is.  BTW, there are a lot of opinions regarding the use of steroids (I had the Kenalog 40 injection) but sometimes you gotta do what you gotta do.  Taking the shot was better than developing MERSA or Stevens Johnson syndrome and I made it through unscathed.  Good luck!

[working dog]

i would think keep up with the interferon....stop the incivek and cut down or stop the riba for a few days....btw...i'm going on to week 18 and every night i get the needle thing for a couple hours...i think its because when i take a shower my pores open up .... then i use soap ...rinse off...stop the shower and my pores close...so whatever was naturally on my skin takes a while to come back...i don't know...i know i still bleed from the clawing and picking...mentally things got much better after the incivek...but the riba really kicks my a**....good luck.....billy

[flcyclist]

I stopped everything for now.
-----------------------------------------------------------
Did you stop the Incivek and the Inf/Riba also?  It sounds very reasonable to stop the Inc at week 11, especially if your PCR's have been und.  But I'm surprised the doc would have you stop all, rather than dose reduce.  

So sorry to hear about the rash being such a pain - 80% of the body is certainly a game changer.  I hope the remainder of trt goes easier and you have a great outcome.  Best of luck.

[Lifenet62]

Aw.  You are amazing amd I love yoi, too, Carolyn

[MsDragonSlayer]

Hey everyone!
What a ride this has been. I stopped everything for now.  Hopefully, when i see Doc Monday morning, he can recommend e dermatologist for me.
I feel like the steroid creams and aveeno and geze...all these other tubes of anti itch creams inflame me even more.
The only thing that helps is staying on benadryl and keeping ice packs on me. It doesnt stop the constant stinging needle thing tho.  I feel like this tx is going to cause nerve damage.  According to the guidelines, if you have a severe rash over 50 % of your body you should discontinue incivek.  I read where many people on here don't follow that protocol.

These are the scariest drugs I have ever done, I was so afraid this would develop into a new disease that would be untreatable.

My sweet family thinks I'm going to die if I don't stop. I sit there crying and scratching and rubbing and shaking like I'm a freaking lunatic.
The frustration they feel is horrible.

We spoke with the Doc on the phone yesterday and he said we can start back up after I get this cleared up a bit.

Thank you guys for your concern and support, some of you really blow me away on how tough you have been through these sx. It's amazing and bizarre how everyone responds so differently to these drugs.  I pray I will not fail and that I hit round 2 ready to punch,
Thanks again guys, you are all my family too,
Big hugs
Carolyn

[MsDragonSlayer]

Oh and btw... my body has not improved since I got off incivek, my brain feels better though. Of course when the benadryl kicks in so do the earthquakes, what the hecks with that?

Love y'all,

Carolyn

[TripleCrown]

Actually mentioned your rash situation to my doc and he seemed very concerned. Incivek has specific rules re rash and he said you should go to the doctor immediately. Keep us up to date. Feel better!

[Ski2011]

I had the rash very bad, doctor prescribed "Q-Dryl" an allergy medication and "Clobetasol Propionate Ointment USP, 0.05%" by Fougera.  It took care of it in about 2 days.

[Lifenet62]

I'd call your dr TODAY.  Have him paged. This is urgent. Immediate attention if rash goes beyond mild to moderate. Get dialing kid!!!!!  And get better qui k!  We need you :)))

[pcds]

Your rash sounds very serious.  You need to call your doc and if you have to stop don't worry, if you have been undetected it shouldn't affect your outcome.  I was told by my doc if you can make it until week 8 and have to stop due to the severity of rash, you should be OK.  You are well beyond that.  I had nothing close to what you are experiencing and I thought I'd lose my mind.  It occured at week 10, worse at week 11 and 12.  No a rash even just feeling like needles trying to pop through my skin.