Did you have a riba rash?

Did you treat with standard drugs and have a rash?

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34%

 (12) 

No rash

34%

 (12) 

mild rash

28%

 (10) 

severe rash

2%

 (1) 

Dropped out due to rash

35 Members voted

[James10500]

I'd say between mild and severe.  At times it was actually kind of painful,skin on fire.  Other days nothing,weird

[medicmommy]

Oh, yeah. -But a moderate rash that remained with me for TX. ...I even madeup a song to go with it as I scratched my hide off!

(Sung to the tune of Achy Breaky heart)
Riba Rash Boogie

I gotta scritch my back, my itchy scritchy back,
riba rash breakout don'tcha know?
Then I scritch my sides, my itchy scritchy sides,
and I scootch my butt across the floor! (Picture the poodle-butt slide. LOL)

[Junebug812]

I've had a migrating rash for about 3 months now. Started on my back, has traveled around my entire torso, and now has migrated to my scalp and is threatening my face! Ick! Anyway, I'd say it's moderate. I'm in my 22nd week of tx. Have used lotions which help with the itching.

[babs824]

the rash was one of the most bothersome sx. the itch simply did not respond to anything. atarax helped as did limiting showers adding a humidifier and finally getting prescription steroids but it has diminished about one month after eot and i hope is gone for good.

[meakea]

Oh the rash memories...  For a while there I thought I would lose my mind from the itch that came with it.  

[GoofyDad]

mild to none for me.

[AjaLee]

I had a horrible rash on my arms.  If I just touched them, blood woudl run down.  My (new) doctor told me that is not typical of a RIBA rash.  I went to a dermatologist who didn't know what it was.  This was 10-11 years ago - whenever Ribavirin came out, so I'm not sure what caused it.  It was awful though,

[Bali05]

How do you know if a rash on tx comes from Riba  alone and not INF or a synergy of both ?
My experience on tx is that the longer you are on it the more the skin dries out which
leads to the rashes (psoriasis). I was taking very large dosis of Riba in the beginning
of tx but had no rash from it , yet  with the second half of tx rashes started appearing
The dry winter weather did not help either but with increasing humidity in spring and
summer on the Eastcoast things are improving. I saw a dermatologist who gave me
Salkera Emollient foam which I use more than the cortizone cream. It really helps managing this
sx. If I were on Telaprevir I would definately try Salkera , it is 6% Salicylic acid and works
great on SOC rashes.

b
wk51 of 60

[Andiamo1]

It's impossible to know.  I called it a Riba rash, since that is what this forum calls it.

My own experience is identical to yours.  The drugs made my skin dry, so the winter in NY with low humidity made it much worse.

[desrt]

So, after 24 hours and a statistical universe of 16 responses, we can conclude - what? That the addition of a third rash causing component to current standard of care will cause more rash sx than 1/3 of patients developing a rash that is mild or worse and more than 1/3 of patients to develop a rash that is severe or worse? I looove polls. With their numbers and percentages they're so scientificky. Sorta like making your tx decisions based on what the stock market is doing or planting your crops based on the phases of the moon.

"There are liars, damned liars, and statisticians."
Attributed to Mark Twain.

[Isobella]

After reading through some recent postings about rash issues during tx, I don't think it's too hard to figure out the point of this "scientificky" poll.  I don't think Andiamo is out to write a groundbreaking research article on rashes.  Just as I'm sure that no one here has based their treatment decisions on the stock market.  

I just hope that some people here don't immediately throw out the possibility of treating with telaprevir based on the possibility of getting a rash.  Rashes aren't exclusive to telaprevir.  Some new people may not realize that.  

Our comments here, even when they are snarky can have in influence on some people's treatment decisions.  Hopefully this poll will serve as a reminder to them to do their research, ask questions and make decisions based on their best understanding and the advice of their doctors.

[Andiamo1]

"There are liars, damned liars, and statisticians."  The actual quote is "Lies, damn lies and statistics"  Although attributed to Mark Twain by some people, he actually popularized it.  It has a few attributions that came before;  Walter Bagehot, for example.

I stand by Isobella's reason for the poll.

"Sorta like making your tx decisions based on what the stock market is doing or planting your crops based on the phases of the moon."  or -- choosing a drug based on a rash.

[Trish77]

I think treatment decisions between Telaprevir and Boceprevir may come to exactly that, deciding whether to chance the rash or chance the anemia, depending on one's personal tolerance level or one's own personal health profile. It's about adherence as well as SVR rates and with regards to resistance issues, adherence becomes very important - therefore, choosing wisely becomes important.  After going through both, anemia and intense itching that drove me nuts, I'd take the anemia.  I could manage with it and only missed 2-1/2 days of work during treatment.  However, the itching drove me nuts.  For someone else, they might find quite the opposite.  The rash with Telaprevir and the anemia with Boceprevir are both important to consider when making good *individual* treatment choices.

[Andiamo1]

Well said.

[nygirl7]

Yeah I had the rash bad, to the point of wanting to rip my skin off wherever it rubbed on my clothes. Towards EOT I developed the new rash - the autoimmune rash - that just seems do be disappearing now four years post tx.

I dont want anymore rashes!

[sherritaylor12]

Itch, itch, itch, itch, itch, itch, itch...does that answer your itch, itch, itch... I mean question?
Sherri

[paen53]

I had only a mild rash/itching sporadically thru tx - and this was an issue that my Dr.s thought would hit me hard with higher than usual riba for the duration of tx. I was SO glad cos I had intense creepy crawly itching prior to tx that was nigh on unbearable. This was on SOC 72 weeks enhanced tx.

[medicmommy]

You make a good point. Quite frankly, for me, tolerating all of the sides were worth getting the cure. I am almost 3 years post tx, and for the most part, I am well. I have energy, my liver seems to have repaired itself, and I am going on with my life. The rash was more of an annoyance and I was able to manage it to a tolerable level. I would certainly hope a person who is making up their mind of whether or not to treat comes away from this thread being better informed and committed to following it through if they go for it. ~MM

[Mary4now]

no rash yet, dry skin and itchy where I inject probably because of dry skin and alcohol wipes.

[springroll]

I had no rash.  Wicked bad anemia though.

[frijole]

I had intermittant rash on SOC that seemed triggered by the sun.  I had creepy crawly under the skin itching too.  
frijole

[Anne1717]

lovely rash and on top of it I just got Poison Sumac.  KILL ME NOW !!  Ha ha

[smaug48]

mild to none for me too (but had a nasty sore on my lip for most of tx, wasn't herpetic, dr couldn't identify it even with a biopsy)

[Interfurgen]

there is not a thing better then a pine tree for a rash rubbing, it's hard rubbing your face though !

[Interfurgen]

thanks that is a big chioce to make!

[NorthIdaho54]

My rash started 2 days after my first shot, around the injection site.

After 8 wks on tx the rash had spread to my chest, shoulders, neck, back and even my scalp. A dermatologist prescibed an adrenocortical steroid,  cetaphil/triam cream for the large areas and loratadine pills.

He said if it didn't clear up I would need to reduce dose or stop tx all together but the major reason I had to discontinue tx was the anemia.

As more info comes out about the Telaprevir rash and the anemia with Boceprevir it makes my decision of which to include in my next tx more difficult. - Rhonda

[Marcia2202]

I was on SOC, had only a few patches of rash on my body. They were just there. Sometimes itching more than other times. And often not itchy at all.

[confuzaled]

oh man ive been scratching for 3 months now,it started on my chest, just a small patch then it grew accross my chest and on the arms and now the back and too the neck. it drives me nuts! my 4 year old is telling me to stop scratching i scratch and wake myself up i have to change my sheet frequently, and make sure i always have a kleenx in my pocket because i do it with out even thinkin----  and i havent even started treatment!i was supose to start in april but... my nurse that was coming town hadnt returned my messages. and finally when i did find her after calling 3 different numbers, turns out shes no longer with the same place so she couldnt get a hold of her files from there, so its like hello wasnt somebody going to get a hold of me? so now shes with a different agency and she may not be come to town anymore so im gonna have to travel outta town to see her!