allergic to ribovirin

[Snyder6117]

My ribovirin gave me a severe itchy red rash all over my arms, legs, and back.   My doctor took me off the pills and now is taking me off the treatment completely.  I feel desperate!  I've read on the forum that several others have the same problem, but, are still on the treatment.  I would like to know if the rash ever goes away once you've had it.  I asked my hepetologist if I could try the pills just once more & he said "No, it would probably kill you".  Please anyone whose had this problem - let me know how long you've had the rash and what did your doctor do about it.  I would also like to add (hopefully to help someone) that my Dermotologist gave me a steroid injection and it cleared the rash up very quickly -------the downside of this is I'm a diabetic and steroids elevate blood sugar.  God Bless all !!!!
Hope to hear from someone soon!  (PS - my geno type is 1)

[Snyder6117]

It's been April since we've conversed - I've just had my 2nd appointment with a hepatologist (trying to get on latest treatment for Hep C) - he would not put me on new med due to reaction of ribovirin - this new med is administered with the ribovirin & injecton. He is afraid the rash will develope into Steven-Johnson Syndrome & God I definitely won't chance that - it is a very fatal disease that is more painful than you can imagine.  Google (on image) "Steven-Johnson Syndrome"  - Guess I'll have to take the lesser of 2 evils until something else comes out.  Hope you're doing much better.  I had a steroid injection and my rash completely disappeared (but had to stay off pills). God Bless!
Snyder6117

[Trish77]

Deborah, I'd like to see you get a second opinion.  I think that might be well worth your while.  A little concerned with your doc's approach here.

Trish

[Snyder6117]

I began treatment in June of last year & was told I'd be on it for approx. 11 mos., I've had so much happen lately that I can't remember exactly when I was taken off the Ribiviran.
I think it was in September, so it could be 12 weeks?  I have an appointment with my GI Doc this coming Tuesday and will try to convince him to put me back on the pills (I have never stopped the weekly injection).  I spoke with the hot line nurse that specializes in side effects & she gave me a list of questions to ask him.  Ya'll can't imagine how much I appreciate all of you, total strangers, but yet instant caring friends.  You all are in my prayers.  Also just in case, someone needs the following info for free treatment call [phone].  It took me weeks to finally find out.  I will keep on praying for all of you and God Bless!
Deborah
(Snyder6117)

[chefsalad]

I am sorry to hear you are having the rash.As you have heard it is a common side effect. Usually the arms, legs, belly or back, is effected. It should NOT be severe from head to toe. On occasion some people are allergic.Your dr. will know for sure. Ribavirin is a very very serious medication with a lot of powerful side effects. Here is the # for Pegasys if you have any questions 1-877-pegasys.I hope things work out for you.The water is so important. Yes 1/2 your body weight in oz. Dehydration alone will make you feel mighty miserable not including tx.It is not good for your body and can cause dizziness and with the summer coming can lead to a more serious nature.It helps to keep my fevers under control which I battle with daily. I battle them, but I take control! Personally I can't stand drinking so much fluid.I hope things work out for you  in the long run.Tx requires 100% dedication.

[Deb_c430]

I have read coffee also helps with fibrosis, I still have my morning cup,   I think I would be more worried about cokes and such.

I am careful, moderate person, in food and most things.

Tending to agree with Trish here,  unless your on trial of some sort?

We all get the rash,  some worse than others. I been on pyg and peg, sides were there,  but think for me about the same.

We all respond differently,  our bodies are all different.  That is why smart GIs are treating more on a  patient by patient bases than on set in stone  protocol.

I would love to know a bit more also!

Trish hope your doing ok!  

Deb

[Trish77]

Deborah, what week of treatment were you in?  The reason I keep asking that is because if they stopped you early on, like in the first four weeks I'm thinking, then I wouldn't sweat it so much.  Take time to regroup, get your information together and I would go for a second opinion.  If I was going to hazard a guess, I would say your doctor isn't very experienced with treating Hepatitis C patients and got freaked out by your symptoms.  Either that or there's more to this somewhere.  Doctors can't be pulling people off their treatment drugs because they display typical side effects...better they treat the side effects than remove the treatment drugs unless absolutely necessary.  So I find it a bit alarming that he pulled you off for rash alone .. is that the only reason he pulled you off treatment?  How were your blood results?

Re the caffeine:  caffeine contributes to dehydration but .. you CAN still have a coffee here and there.  Maybe some would disagree with me .. I was a pretty solid coffee drinker before starting tx and I've cut back considerably but I haven't quit.  It IS best to quit entirely, I think .. but it's not going to kill you to have one here and there as long as you're compensating with plenty of water.  Now.. with the general nausea, I just haven't been in the mood for coffee much ..except for my one cup at work in the morning which is more to get me going than out of interest.  That's about it.  Maybe others feel different, that's where I'm at.  I also mix my coffee half and half sometimes, half regular and half decaf .. it's not like coffee will kill you .. you just have to adapt to the requirements of your treatment.

Take care.

Trish

[Snyder6117]

Thank you all so very much for responding to my post.  It is such a comfort to know that someone cares and listens.  I just got off the phone with a nurse from patient assistance
for the Pegysus -Copegus hot line.  She told me to divide my body weight by half {EXAMPLE: 120lbs devidided by 2 = 60} this means drink at least 60 ozs. of water daily, this HAS to be water, do not count soda, coffee, juice, etc. The water will flush out my system to help with the rash.  She told me that 1 pill (copegus) stays in your system approx.70 days to 6 mos.  I was also told to stay away from caffine & carbonated drinks because this treatment dehydrates you & the corbonated sodas & caffines will further dehydrates.  I hope this makes sense, I am under tremendous pressure, as my mother has just been admitted to a Geri- Psyh ward for her Alzhiemer's and begs pitifully to come home.  My dad got so upset he broke out in shingles under his tongue, he also has prostate cancer. He is 81yrs old, & yesterday while visiting my mom all 3  of us started to cry.  To make matters even worse my precious husband has had the 2nd cancerous tumor removed from his bladder and is on chemo.  I feel as if my world is fallen apart.  I have a list of questions the nurse gave me to ask my GI doc on Tuesday of next week, can I get back on pills but lower dose, another liver biopsy, etc.
Thanks again to all!  You all are in my prayers - God Bless

Deborah (Snyder6117)  P.S. don't have time to edit this - I hope it makes sense LOL

[Trish77]

I would seek out a second opinion if I were you.  Riba Rash seems like a normal side effect of treatment, seems incredibly common.  I'm in week 8 and haven't had it yet, only what I call "feather itching" so only going on what I've read here so often.  I'm shocked your hepatologist took you off your ribavirin as a result.  And to say treatment would kill you if you went back on?  Because of a rash?  Are there more details to this?  Have you had other side effects?  What has your blood work been like?  Is this the ONLY reason you were taken off of treatment?  And at what week are you?  

Sorry for peppering questions at you but a bit concerned with your situation from the outside looking in.

Trish

[medicmommy]

Hello! Yes, riba rash can be ugly...the first 3 weeks of treatment, I got it on my eyelids, in my mouth, and some other rather delicate parts...I started taking antihistamines, and now, it's tolerable...Even though you're diabetic, I'd get a second opinion...the Dr may have seen this as a systemic allergic reaction, which is a very different animal than the normal Riba rash...Both itch maddingly, but the allergy one comes on suddenly with a drop in your blood pressure and shortness of breath, while the other comes on over a period of days, and decreases with time (weeks for some)...Are you seeing a hepatologist, or a regular MD? It may be too that your doc isn't very knowledgeable about/ comfortable with the sides of the tx...

[HectorSF]

Synder,

I've had the rash since may week 4 or 5. It developed slowly with a few little red bumps at first. Then it has spread over my sides and back and the bumps are raised up high now. During weeks 9-10 the itching would be so bad it would wake me in the middle of the night. And i just wanted to scratch my skin off! I never knew itching could drive me so mad!!! I'm now on week 11.

After reading another post here I tried the "Gold Bond Triple Action Relief for Extra Dry & Itchy Skin" with the green bottle and the red top. It helped a lot with the itching, although all the red bumps are still there. I figured this tx has effected almost every part of me anyway so I just put up with it. I may see a Dermatologist if it gets any worse. But I don't want any more meds if I can avoid them. Luckily I don't have a girlfriend right now so I'm the only one the has to deal with it now. Plus I figure I will back to my normal tanned, buff and athletic build all in good time! And hopefully minus the virus! LOL!!!

This isn't the first time I've heard of one doctor stop treatment when other patients of different doctors have continued with treatment with the patients same side effects. I guess it's a judgement call. Treating HCV is difficult and complicated and I can understand a doctor not wanting to risk harming the patient.

"I asked my herpetologist if I could try the pills just once more & he said, "No, it would probably kill you". Huh??? What does he mean by that? Die from the rash (!) or do you have cirrhosis, like myself, and he doesn't know if the tx might cause your liver to decompensate? Sounds strange to me. (?) If you decide to retreat at some point you will need to prepare for this as you don't want to interrupt or stop your meds during treatment as it will allow the virus to breakthrough and you will have to start all over again.

Sorry to hear your treatment got interrupted before achieving SVR.

Hector

[dogsledder]

The dreaded "riba rash". Some people react more severely than others, but yes, it is a sx of tx. I also was on prednisone for the rash, as well as benydryl, atarax and pepcid ac, cortisone and chlobex.  I am 10 wks post tx and still have some rash residuals. I had the rash, pretty much from week 16 thru now. Some times worse than others. Drink lots of water to keep the skin hydrated and use lotion/creams. There are many posts in this forum on the subject. People like the Gold Bond (medicated) lotion. There are also many others. I also used a few gallons of olive oil...I felt like a salad! I an also 1a. Good Luck. Maybe you should get a second opinion on tx?