Ribavirin eyelid rash?

[scandoo]

Anyone have a terrible eyelid rash? I've had it for weeks now. The doc took me off Ribavirin for a week, but it hasn't worked. I woke up this morning with my eyes swollen almost shut. The rash is spreading over other parts of my face now. Has any of you had any success with anything to combat this?

[Penney]

Oh my I have it now!  Going to Dr. today and telling him about it.  It is driving me nuts!  My lids are swollen too.  Stopped wearing makeup for a few days hoping that would help.  Bought new eye cream, hoping that would help.  Nope.  Still have it.  I will let you know what my dr. says today.  

I hope I don't have to go off the Ribavirin.  

Take care,
Penney

[Lori_V]

I had a friend that this happened to as well.....It spread all over her face and down her neck. Nothing helped it and it seemed to go away in time after coming off the riba.

Hopefully yall will find something that works or get better advice from the docs as to what to do, rather than coming off those nasty riba pills.

Good Luck to you both!

[Penney]

Oh my!  How horrible to have to walk around with a rash like that.  I hope we can do something about this.  I can't begin to imagine having this thing spread or having to stop the Riba because of it

[MikeBoston]

Hi All,

I've been away for a while - busy moving.  I appreciate all the info I got last time I posted about my eye problems.  I had read that the meds cause renal impairment and I was associating renal (kidneys) with retina (eyes).  Joris straightened me out on that - what a relief.  I thought I was going blind.

Anyway, I am having puffyness on my eyelids, dry eyes, and some blurred vision but I went to the eye doc again and he said all the important stuff in my eyes looks good.  I got some eye drops for the dry eyes and it helps.  The eyelid thing is better now.  Maybe it's just a reaction that will wear itself out.

I called the pegysis help line and they were very friendly but not much help.  Everybody says the same thing - if you complain of a symptom they tell you to see a specialist.  The specialist says, hhmmmmm I wonder what ribavirin is doing to this patient, lets monitor it and see if it gets worse.  It's not their fault, they just don't know much about this stuff.

On a lighter note, I got the results of my second round of blood work back and my ALT was 25.  That's the lowest it's ever been.  That makes me feel good.

Take Care,
Mike

[Penney]

Congratulations Mike!  Hope your move went smoothly.  I am going for my 2nd set of blood test tomorrow morning.....the Dr. wants to check my counts....

As for the eye rash, am I alone in the feeling of being a guinea pig??  It seems that all these doctors just go according to their own assumptions on things.  It is such a shame that we are all out as 'test dummies' for the new meds and the old meds and the upcoming meds.  

My doc is sending me to a dermotologist for the eye rash.....yeeee haaa, another Doctor!!!  He has never seen it before as a side affect to this treatment.  As for my inability to breathe, I have NO answers on that one....

Shot # 7 was a tough one for me.  I left the doctor today feeling worse than I did before I went in.  Who knows anymore......just smile and get on with it, huh?

Scandoo, I am curious to know how you are doing with this.  Please keep me posted cause I am as confused about this rashy thing as you are.....

Thanks,
Penney

[scandoo]

OK, Penney, I called the doc today, and they told me to see a dermatologist because nothing they were telling me to do was helping. I even called Schering Plough today to find out what's going on. They were no help at all. I tried to find a dermatologist who would take me right away, and when I finally found one, they didn't take my insurance! LOL--what else is new? Anyway, I went this afternoon. I love this doctor. She's a real sharpie---Harvard med school. AND she was recommended by my Gastro group. She's actually had experience with people like us!! My gastro guy sent her a patient with a Riba rash last week. She told me that it's not so much an allergic reaction, because then it would be all over the body. It's more that our bodies are kinda getting overwhelmed by the interferon, and allowing things to come through...in this case, eczema. It's on the eyelids because the skin is so thin there. She told me to go right back on my Rebetol and do my Pegasys shot, and she gave me some cream. It's a prescription cream with steroid in it. She told me that it would take about 2 weeks to clear up, but she'd treat me through the rash so I wouldn't have to stop the HepC treatment. I sure hope it works. I'll let you know. Good luck with yours. It stinks, doesn't it? I look like a halloween mask!

[Penney]

Scandoo.............That is really good news!  Mind telling me the name of your eye cream so I can go to the dermotologist armed!?

I am going to make sure I tell him about your experience.  It is helpful to hear that someone else has a 'remedy'.  I thought it might be scoriosis (sp?).....but ecsema sounds about right too.  Thanks for your help!

YUP THIS STINKS!   :-/

[scandoo]

The stuff is called Dermator emolient cream. It's prednicarbate. I've used it twice a day since Monday, and the rash is almost gone!! I'm so happy! I started back on all my meds, too, so it's gotta be the cream. I also use this stuff call Eucerin cream, which is like a whipped version of vaseline and water. No perfumes or other harsh chemicals. It's so bland that it can go right into your eye and it doesn't hurt. But it is so soothing. A pharmacist told me about it. It's over the counter, and costs about $5-6 a jar. The funny thing is that my face is losing many of the wrinkles that were there before...not a bad side, huh? Jeez, if I get all my hair back, and keep the 17 lbs off that I've lost, I could look ok when this is all over!  

[Penney]

Thanks!  My eyes are not any better and I have stopped wearing makeup .  I am going to go the the pharmacy today and ask for that Eucerin.....if I loose some wrinkles, that will be worth more than the 6 bucks!!!!!


Glad your rash is going away so quickly!  I am not seeing a dermotologist until next Thursday...I will keep you posted  
Take care!
Penney

[Penney]

Well, couldn't wait till next week to see a doctor about my eyes.  Went to my primary.  He gave me this stuff that has no steroids called Elidel.  BURNED my eye lids about an hour after I applied it.  I made tons of phone calls today to find a dermatologist who can take me NOW....finally I found someone who is willing to fit me in tomorrow.....

I did buy the Eucerin....my skin has been so dry from this treatment, I am hoping this stuff works well

Take care,
Penney