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 !!!!!!!!

[MsDragonSlayer]

Alright I found an injection site without a rash on my inner thigh, that's done!

[can-do-man]

I would call my doctor ASAP, just might be time to end the incivek...... If it is the incivek rash it should start clearing up soon after you stop it..... See your doctor, good luck.

[can-do-man]

Thus, the current guidance on rash management with telaprevir is that patients who develop a mild to moderate rash should be monitored. If the rash progresses to involve > 50% of the body surface area or there is the onset of systemic signs and symptoms, telaprevir should be discontinued and patients should be referred to a dermatologist. If patients improve within 7-10 days, pegIFN/RBV therapy can be continued. Telaprevir cannot be reintroduced once it is withdrawn. Therefore, it is imperative not to stop therapy too soon or too late, which requires ongoing assessment of patients with rash in the office to determine the extent and severity of the rash and to guide management. For the management of mild to moderate rash with telaprevir, topical therapies such as antipruritics, antihistamines, and topical corticosteroids should be tried first. It is not recommended to use oral corticosteroids (eg prednisone); if the rash is sufficiently severe that prednisone is being considered, telaprevir should be stopped. Rash symptoms will begin to resolve within 7-14 days after telaprevir treatment is completed.

[MsDragonSlayer]

Thanks, I am reading this too. I just did not want to stop being so close and all. I will call the dc again tomorrow. He told me if I can't hang in there, I will have to stop. I am just not sure if I'm being a wimp because everyone else suffers like this too. It's a side effect, so I thought I had to just hang on for dear life through this tx. Everybody complains and suffers so. I wondered if anyone else has had this happen and the rash subsided after starting triamcinolone acetone cream usp 0.1%?

[Aaron57]

Exactly what can-do posted is correct Tx protocol  ..

One hcv clinic I know of , now treating 75 patients with PI's , has had to admit 5 of them to ICU because of the rash ..

Contact your doctor asap .

[MsDragonSlayer]

Thanks guys,
About 80% of my body, my husband says it's med to severe. I am going crazy. Thanks for the advice. I don't feel like such a wimp now. I will call doc....I guess I will do my next dose in the morning, man, my gut says don't do it. You guys are awesome! Thanks for the support! Late at night and all...big hugs

[can-do-man]

I agree with what your gut is saying, if you and your doctor decide to go on with the incivek skipping one dose shouldn't matter this late in the game.

[frijole]

Sounds pretty bad, dragon.  Has you doctor seen it or did it come up after your last appt. - 80% of your body is pretty significant.  My doctor said he has had good luck treating it if it is treated early.  It sounds like yours got away from you before anything is done.  I don't think the INC rash is something we can take care of OTC but rather should talk to our doctors early.  

frijole

[Advocate1955]

My husband took Hydroxyzine HCL 25 mg and used Triamcinolone ointment prescribed by liver specialist for the rash.  She also recommended moisturizing with Eucerine cream and drinking lots of water.  We also put tea tree oil on the blistery parts of the rash, and he thought that helped.  The rash improved after the first few weeks on triple therapy.
Advocate 1955

[JasmineT]

Hope you feel better.  Maybe some of the ideas advocate provided will help.  I accidentally missed 1 dose of incivek in week 2 and was still und week 4.  As can do man said. Missing one dose now would urbanely not impact your svr.  Be careful with yourself.  Am pulling for you.

[working dog]

i thought my rash would go away after incivek...it did a little but i think the riba gives me a rash...at 18 weeks i have a pretty bad rash..it kind of comes and goes...the bad sores stay but the rash i'll feel little bumps and then in an hour they get way bigger...last night my rash conected between my chest..it was always divided by a few inches...what happens on one side of my body seems to be similar almost the same time...i never had great skin...ever...so i'm sure that has something to do with it..maybe folks with more elastic skin do better...at any rate...better watch out...i'm in bed all day today with low hgb...its terrible...haven't even been able to pick up the lab top much...things can go south pretty fast...you of course want to keep tx...thats # 1....get through this...sounds to me like you should weigh out whether to stop the incivek...then maybe cut back the riba till you get a handle on things...good luck......billy

[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.

[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 :)))

[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.

[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!

[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

[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

[Lifenet62]

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

[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.

[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

[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!

[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

[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

[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