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1995824 tn?1330382649

Made a Decision - Rash

I have posted new pictures of my rash this week - at least, have posted the pictures that were modest in their presentation. They are on my photo page here - http://www.medhelp.org/user_photos/list/1995824 . I am in constant agony when I am awake.  Nothing has helped.  Not the clobetosol, not the Atarax, OTC meds... nothing.  My entire body is burning and itching.  

The only place the rash has not traveled to at this poing is my face and my feet.  If you look at the pictures and imagine what you see EVERYWHERE excet a few spots here and there (none on my left underside of forearm but on the right - none on my feet) - that is what 80% of my body looks like. i run a low grade fever at night.

I have made the decision to stop taking Incivek as of tomorrow.  This will put me five days short of finishing the entire treatment, but I feel I have no choice at this point.  The doctor has left it up to me, I guess, so that if any finger pointing can be done, it will be done at me. I just feel that he does not know enough about this rash to have treated it aggressively from the start. I guess I am one of the unlucky percent that get it this badly.  Also according to the NP, I am the only one of their patients who have the rash like this on my body.  One person has it on their face (I hope mine doesn't spread there). She actually asked me if I could be having contact dermatitis from someone else in the house. Hello?????

I would appreciate your input and thoughts.
56 Responses
Avatar universal
My husband's rash on Incivek looked similar to your rash.  It was fairly widespread, had hives, and had some blisters.  It was very red, hot, and very itchy.  The main difference that I can see from looking at your photos is that his rash moved from place to place and didn't really cover 80% of his body (in the same stage of the rash) at one time.  If I recall correctly, it covered his back for a few days, then moved to another area for a few days...at different times it was on his face, hands, feet, legs, arms, and torso, so basically every part of his body, but not all at the same time.  It would spread from one area to another with the first area drying up and healing while the next area was inflamed.  All in all the Incivek rash lasted from about week 2 to about week 8 for him and then gradually improved.  He took Atarax and Triamcinilone for it.  He also took cool showers, used Eucerin body wash in the shower, and used Eucerin cream after his shower.  We used tea tree oil on the blisters.  Sometimes he stood in front of an open freezer door or stepped outside in the cool night air.  In comparing his rash to the pictures on Vertex, his rash was matched the picture described as "moderate", but looking back, I think it was probably on the borderline of "severe".  He finished the 12 weeks of Incivek and then during the first week after the Incivek had some stinging/itching and neuropathy like tingling and twitching (with no rash), but that went away within a few days.  I have read that someone on the forum was prescribed Gabapentin for the neuropathy type symptoms (stinging, tingling, twitching).  I think Gabapentin is Lyrica.
Advocate1955
Avatar universal
I agree with you, stopping 5 days early should not be a problem. Now lets just hope the Incivek is the main problem and you get some relief soon......... Best to you, hang in there.
Avatar universal
BTW, your doctor and NP doesn't sound to HEP on this.
1995824 tn?1330382649
No, not HEP at all.  :-)  It must be the Incivek as my riba has been reduced to a riduculously low level.
163305 tn?1333672171
Although I didn't do triple tx, I changed my interferon dosage during tx ( with doc's approval) and so far am still und.

In my opinion, doctors have us take the highest dosage to ensure the most people succeed with tx.

Have you tried taking oatmeal baths? Though I don't think it'll take care of your rash,it is soothing. You can take dry oatmeal, put it in the blender to powder like consistency, and add to the bath.

Hope you find relief soon.
87972 tn?1322664839
With only five days remaining it’s difficult to imagine that doing so will significantly alter your odds of success. Of course if something untold occurs and you do end up relapsing, self-recrimination tends to be a b!tch. A person can only expect to deal with so much though; this Incivek rash is said to be an intractable, miserable condition.

I assume you’ve seen a dermatologist to no avail?

Good luck as you go forward; hopefully the rash resolves soon after you stop taking the drugs. I think they leave the system fairly quickly; yuck!

Take good care and let us know how things go-

--Bill
163305 tn?1333672171
Oh, you might also look at this, if you haven't already:

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Avatar_n_tn
By kmatucson
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| Jan 19, 2012
2 Comments
I remember reading one of the posts a month or so ago where someone explained how they use oatmeal to resolve the rash.  I think they mixed it with something and then spread it on the rash and it help tremendously.  Does anyone else recall the post?  I think I have looked at every post with rash in the title, but I can't find it..

I'm just now getting a rash with only 5 weeks left of this nightmare, so I want to get on top of it.  I do have Aveeno with collodial oatmeal, but it doesn't seem to be helping much.
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http://www.medhelp.org/posts/Hepatitis-C/Side-effects-after-Incivek-is-over/show/1584953

From MrRon  Oct 07, 2011 .To: Everyone.
Sunday Oct 9th will be my lasy day of Incivek.. What a freakin ride... For your itching,blister's,hive's.......I got you covered..! Benadryl make's my skin crawl.. Nothing worked... OATMEAL ...!!! That's right plain old *** damn Oatmeal.. Take a cup  of Quaker put it in your little hand held food processor with two tbs of Corn Starch.. Mix that baby up into a powder. Get a small bowl and maybe a pop stick. Mix it to say baby food consistency with water,little at a time - spreadable not runny otherwise you'll have yourself a real mess.. Spread on a layer with the pop stick or just your finger's. . Let it dry on your skin for 20 to 30 min. Don't touch it.. It may burn at first ,but that's the bad stuff gettin sucked out. Then it's gonna itch.Don't touch it.. The reward's coming. After it drie's stand in the tub or better yet go outside and rub it off. Try not to let the nieghbor's see ya ha ha . It will be rough and  and you'll get to scratch... Rinse with cool water or a wet towel. If you get another spot paste it on there.You'll see those rashe's start to dry up within a few hour's..  You can even throw that whole cup into the bath tub and soak.. I mixed some up and kept it in a sealed container on the kitchen counter.My worst month was #2.. People don't realize how bad this disease can be.. The head trip alone can kill you. You don't feel right,you don't think right. It get's scary.. In Aug. 2005 I was in the hosp. with end stage cirhosis. They told me to buy a coffin I wasn't leaving.. I was 44.. Well I told Dr. Death to " STICK IT "...!.    I'm still here. I responded to the Inciveck within the first month.. NO HEP C..!!!     The road back was Horrific... What I did was a miracle,no lie . It would have been far easier to have just died.  FORCE yourself to do something, walk ( I must have walked a million mile's at all hour's) rock in a chair,cut the grass. Move slow if you have too. Your gonna have to reach deep down in your gut's.. DO IT.. You'll feel better.. If there's anything I can help anyone with ,drop me a line.. I'll tell you what I know.. Fact's not fiction.. This disease really suck's....!!! Got it before I was even 20..????
163305 tn?1333672171
Sorry about that,  when will we ever get an edit function on this forum ?
1995824 tn?1330382649
I have tried it all... the oatmeal baths just made everything go redder and more itchy, even though it was a cool bath and all I did was basically lie in it splashing colloidal oatmeal bits on my skin. Gold Bond only softens the skin. Clobetasol, a heavy hitter from what I understand, has not helped at all. OTC cortisone doesn't do anything. The only time I am not in agony and true pain at this point, is when I am sleeping and everytime I wake up, it is a little worse.
Avatar universal
As you can see below in the 8 week trials svr rates were just slightly lower then the full 12. Given what you look like and the fact you have done just over 11 weeks you should be fine. And even better if you were und at week 4.

The SVR rate was higher in both the 8- and 12-week telaprevir arms compared with the standard-of-care control arm. SVR occurred in 75% of patients in the 12-week group, 69% in the 8-week group, and 44% in the standard-of-care arm (P < .0001 for the comparison between each telaprevir arm and placebo). In addition, 58% of patients in the T12/PR arm and 57% in the T8/PR arm attained eRVR and were able to truncate the course of therapy to 24 weeks
The SVR rates were higher for patients who achieved an eRVR: 89%, 83%, and 97% in the T12/PR arm, T8/PR arm, and PR arm

http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%206.aspx

Avatar universal



Clear guidance for managing telaprevir-associated rash is detailed in the prescribing information.[1,2] Management of rash that is mild (localized) or moderate (more diffuse, but covering < 50% body surface area) involves continuing all medication, monitoring for progression, and using symptomatic therapy consisting of topical corticosteroids and/or oral antihistamines. Systemic corticosteroids are contraindicated given the potential for drug-drug interactions with telaprevir. For severe rash, the management approach is to discontinue telaprevir, continue peginterferon/ribavirin, and monitor patients closely over the course of 7 days. If the rash does not improve or worsens, consideration should be given to discontinuing ribavirin and/or peginterferon. If a patient shows evidence of either DRESS or Stevens-Johnson syndrome, all treatment should be immediately stopped, with favor given to patient hospitalization and consultation from a dermatologist. It is very important not to reduce the dose of telaprevir in response to rash—or any adverse event, for that matter—as dose reduction may result in the emergence of telaprevir-resistant HCV variants.

http://www.clinicaloptions.com/Hepatitis/Journal%20Options/Collections/2011%20JO%20Hepatitis%20Volume%205/Volume%205,%20Issue%201/Pages/Page%204.aspx


1815939 tn?1377995399
Your rash looks very uncomfortable (which I know is an understatement).

I would suggest getting an emergency consult (get in the office any way you can) and see a dermatologist.  Your treating doctor should be able to get you in to see a dermatologist on an emergency or urgent basis (like Monday).

I am a bit surprised your treating doc did not already send you to a dermatologist. (But then, neither did mine until it was very advanced. However, your rash is worse than mine was.)

A dermatologist may take a biopsy of one of the hives (mine did) which can show possible causes. And a derm doc will probably order some other tests, like ANA or FANA and maybe ENA panel (mine did). This would be to rule out a systemic cause such as an autoimmune disorder.

The other thing is that a dermatologist will probably have some better ideas about what may work to get that rash under control so you are not suffereing.

I don't want to be the harbinger of possible bad news, but my rash never showed up until week 10 and I still have it at week 27. My case manager thought it was the Incivek so she did nothing thinking that when I got off Incivek it would go away.  Well, it did not. It got a lot worse. Mine is most likely from the other drugs I am still on (Inf. and Riba). So your's may be from any of the 3 drugs. Even if it is from the Incivek, the rash can linger around for weeks.

I mention this because you or the doc may think that stopping the Inc. will get rid of the rash. It might, but it might not. Therefore, if I was you, I would try to get in to see a derm doc ASAP on an emergency basis. Waiting just delays relief.

Just for the record, my derm doc prescribed fluocinonide ointment, clobetesol, and Hydroxyzine (25-50 mg every 6 hours). This combo is working, at least to control the itching. Also, the rash will clear after a few days of fluocinonide ointment, but it just moves next door to a space that did not get any fluocinonide oint. Then I start all over applying fluocinonide to the new area. At least it improved.



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