Rash...

[momschampion]

My mom started her Incivek tx this past friday... so she is 5 days in....  and has already gotten a rash. The doc has told her to not wash with soap unless she has to, to avoid direct sunlight (near impossible she lives in AZ) and to use lotion three times a day. The doc has called his pharmacy to have them mix something for the rash (unsure what he didnt tell my mom whats in it it's something they mix special for the rash associated with the incivek treatment) Which she will have sometimes tomorrow.
Her doctor said that he has never seen anyone react this early with the rash and that they may need to discontinue incivek.... I am worried that he is going to cause my mom to quit when it isn't necessary. I would really like it if you all could share any of your experiences with the rash. She said as of right now she is covered (even her bottoms of her feet) but that it doesn't really itch that much yet.

Anything you can share about your experience will be helpful ... how soon did you get it, how long did it last, what medications etc helped the most with getting it under control, what things did you find helpful at keeping it away once it was gone..... anything you can think of in addition to these things. I just want her to see she is not alone... that it is NOT all that rare to have the rash this soon and that she can continue if she wants.

Thank you all so much!
Sami

[Advocate1955]

My husband got the Incivek rash at the beginning of the second week of treatment.  It covered about 80% of his body, but not all at the same time.  It was described as moderate, very red, very itchy, and some (a few) blisters.  He used Eucerin body wash in the shower, Eucerin lotion after the shower, Hydroxizine, and Triamcinolone ointment.  I also put tea tree oil on the blisters on his back.  I was worried that his hepatologist would make him stop treatment, due to the rash, but she didn't.  The rash was difficult, but manageable.  It lasted through about week 7 and then started to improve, but didn't fully disappear until he was finished with Incivek.  If you google "Incivek rash" under images, you will find some photos that help to determine if it is moderate or severe.
Advocate1955

[Dawn703]

I agree with the others, in particular ceanothus. It is a tough decision for her to continue with the incivek because the rash can be life threatening in some instances, but the problem is, NO ONE has physically seen her. Perhaps she does need a different Dr. and should be seen by a dermatologist.

[ceanothus]

ARRGGGHHH!!!. It makes me so angry to hear of doctors behaving this way. You are doing everything right to try to help your mom with her tx, and her doctor seems to be doing everything wrong. You've gotten good advice from others here who have much more experience with the rash. I second that advice and hope you will try to get those emergency appointments with a dermatologist and a competent hepatologist. Please do try to find one with more advanced training and specialization, or at least with more stature in the medical community, as in my own experience I have to say that very few doctors are ever willing to openly contradict the advice given by another currently treating doctor of the same specialty. It seems that professional courtesy to each other can trump the best interests of the patient when the two physicians have similar stature.

If it was me, I think I'd probably continue the meds and watching the rash very carefully, while trying to get urgent appointments with specialists, but I'm not a doctor, just another patient. This is a really tough and potentially dangerous decision. Educate yourself about the risks ASAP.  Does your mother have a recent liver biopsy? I ask because the degree of liver damage is very significant in determining the urgency of treatment. If she has minimal damage so far then having to quit tx now would be less of a problem, as she would be in a better position to wait for other drugs that are expected to hit the market in a few more years (they are currently doing well in clinical trials). I applaud you for working so hard to help your mom with this, but I certainly don't envy the position you are in. I wish we could help more.

[coeric]

sorry to hear your mom is having trouble with the dreaded incevik rash. i also have had rash issues since day 6 and am currently on week 47 of treatment. i was pulled off the incevik at week 10.  i agree with pooh's and idyllic's posts.   i posted some photos of the rash on my profile.  the docs had me emailing them the photos.
blessings
eric

[pooh55811]

"I really have issues with this doc right now... He said and did all of this without physically seeing her in his office at all. "
-------------------------------------------------------

I would have serious issues with this doc also if he was my doc. The entire scenario seems to have been handled extremely poorly. The fact that he did not get back to her immediately about this rash and that he was making all of these decisions (which meds to give her for the rash, how to treat her for the rash, and when to stop treatment) without ever seeing her, is cause for alarm.

In my opinion, she is not getting the appropriate care and her treatment success is being jeopardized (even her treatment continuation is being jeopardized).

If I were her I would seek out a dermatologist on an urgent basis (today) and see the dermatologist for her rash treatment.

I would also make calls today and get an urgent appointment with a Hepatologist in the area (not sure that is possible, but maybe if she explains the situation she can get in to be seen ASAP).

She needs a competent doctor (Hepatologist) to be making these decisions. The wrong decisions can affect her treatment and her life.

I surely hope she gets appropriate care soon.

[momschampion]

I called the drug company to ask if it would be too late for her to go back on the drug after missing two doses because the hydroxyzine already seemed to be at least keeping the rash from getting any worse. The drug company said as long as her doctor and her decided to then yes but they wouldnt recommend going any longer.

I then called her doc to ask if she could stay on the incivek and see if the topical steroid cream and hydroxyzine would work. He called my mother back and told her

Protocol calls for stopping incivek if a severe rash is present so he could not tell her to continue... however she was sitting at home with the meds so if that is what she wanted to do he could not stop her...BUT that if she did and the rash got worse she risked having to discontinue the interferon and the riba as well. As it stands he told her if her rash doesn't clear with having discontinued the incivek within 7 days he is taking her off the interferon and riba.

I really have issues with this doc right now...
He said and did all of this without physically seeing her in his office at all.

[Dawn703]

That is sad, again Ihope her Dr did everything to keep her on treatment. Probably too late but has she been to the ER if her own Dr won't evaluate her in person? Please keep us updated.

[momschampion]

Mom just got the call back from the doc on wether or not he would call in the hydroxyzine... he had her send two photos to him to determine the extent of the rash ... one of the worst and one of the areas that look the best. Based on the photos he said she has severe rash and he told her to immediately stop the incivek. :'(
If she has not cleared up within 7 days she is going to have to stop the pegasys and riba as well.... :'(

i cannot believe he is saying these things without even seeing her physically. ....

Highly upset right now...

:(

~Sami

[momschampion]

Well... I called the apothecary shop/pharmacist to find out what was in the cream they are making for her. It is Cetaphil (a lotion i can buy at walmart) as the base as well as triamcinoloe which is a topical steroid. My mom started with the rash apparently the day after starting treatment... so she took her first dose Friday and had the rash begin on Saturday. It has gotten progressively worse day by day and she has NOT been seen physically by the doc... he just called in the cream.

I spoke with my mom and based on the things we read here as well as other research she had me call and ask to have the Hydroxyzine called in in addition to the cream and I also told her that she needs to look at the chart and judge how bad it is so that she can tell the doc if it appears to be a mild/moderate/severe rash... and that preferably she should take her butt to the docs to be seen. We are now waiting on a call back from the doc saying wether or not he is ok with calling in the hydroxyzine or if he wants her to come in etc.

It kinda seems to be being handled in a very off handed manner  to me because she called the on call doctor on sunday, didnt get a return call from HER doctor until Monday AFTER the business day was over so her cream did not even get called in until today and she wont get that until tomorrow. This is all making me REALLY wish that she would have come here for treatment because at least then I could deal with it all in a face to face hands on approach. * sigh *

Thank every last one of you for your comments thus far you have been extremely helpful in helping to put her mind at ease with what needs to be done and what to expect (in a general sense of course since everyone is different. )

We appreciate it TONS!

~Sami

[Dawn703]

I got the rash the first time three days (yes just 3 days) into treatment, probably covered probably 70-80% of my body, including my scalp. The only place it didn't cover was my face, upper chest, palms, and bottom of my feet. My Dr's nurse just took it lightly and said it's a side effect. I don't think they realize. I was told to use body lotion, that's it. I used eucerin calming cream or gold bond medicated lotion. Benadryl or hydrocortizone did nothing. I took so many cool oatmeal baths and only cool showers, etc... It eventually resolved after a month, but I took showers and reaplied the lotion three times a day. It was maddening. The second time I got the rash, it itched sooo much worse than the first. After 3 weeks it wasn't going away and I was not getting any sleep but cat naps here and there, so I pretty much demanded that my Dr. prescribe fluocininide based on someones reccomendation. It worked very well; I got some relief after 24 hours and the rash started slowly getting better (especially the itching), and was gone probably 2 weeks after starting to use the fluocininide. Good luck and I hope her Dr. will do everything possible to keep her in treatment. Sadly we have to be our own advocates, Dr's, well many, seem to treat the virus and not the patient. I got to the point that I just got fairly demanding with my Dr or his nurse. I'm sure they're glad I'm done with treatment. LOL.

[johnr1]

my rash didn't get noticable for a couple weeks and increased from there.
Your mom's is earlier than mine and I only got it moderately
on arms, legs, chest, back, face, scalp, but not the bottom of my feet. I do know that a very small percentage of patients get a "systemic" rash that would cause her to discontinue. Also something called "Stevens-Johnson syndrome that nobody wants to get. A small small % can be fatal...so nothin to mess with.
Calydryl clear and vaseline total moisture is what I used..it did ok ...nothing great.
My rash subsided when my ribavirin dose was reduced for the 3rd time. We reduced my dosage due to severe anemia..not the rash.
So far...so good..I have the big 24 week test coming up.

I live in Az and am 21 wks done with the incivek tx. It is not an easy road...but I was "UND" at 4 and 12 weeks and that kept me going.
I'm still feeling pretty rough on the pegasys at week 21..but again...I've got to get this virus gone.

your mom will beat this virus  . And she WILL need you as her champion.
I wish you both prayers, luck and good thoughts.

[pooh55811]

Many of us get a rash, but five days into treatment with a rash that covers her body is of concern.

Did the doctor actually see her rash today? He cannot determine how severe it is if he does not look at it.

If the doctor that your mom spoke with or saw was not a dermatologist then I would recommend seeing a dermatologist ASAP on an urgent basis, tomorrow if possible.

In my opinion, the rash should be treated proactively and aggressively to avoid it snowballing completely out of control and to avoid possibly having to stop the Incivek.

As Idyllic mentioned, if the rash is as severe as you described, she should be on a prescription oral antihistamine, a strong one, something like Hydroxyzine. A dermatologist will order the correct medications and the correct dosages.

Also, a strong steroid ointment would help, but the antihistamine is needed for the systemic effect. (I take Hydroxyzine 50 mg every 6 hours and it keeps my rash and itching at bay.) (Over the counter antihistamines and creams are not going to work for a severe rash. They are a waste of money.)

The three prescriptions I used/use are Hydroxyzine 50 mg every 6 hours, fluocinonide ointment topically, clobetesol solution topically. My rash did not get under control until I was on the Hydroxyzine.

Here is a link to a page that shows you photos and management of an Incivek rash:

http://www.incivek.com/hcp/assess-and-manage-rash

You can see that the rash needs to be assessed, treated, and brought under control ASAP or it can potentially jeopardize treatment.  

I truly hope your mom can get the proper treatment and get the rash under control.

[momschampion]

First thank you for your response :D

I did read some of the posts from the ones you all linked to on my other (20 grams?) post and read to her about the different meds some of the others have used in treating/managing the rash. Also gave her the site info and all so she can sign up and speak to you all herself.... but she is slow at getting to things because she is busy with a lot of other things but she really loves the idea of being able to talk to and compare with others going through this.

I told her also that if the cream/ointment he is having made for her (and i will be finding out the ingredients to this stuff) doesnt work then she should talk to him about the other meds mentioned by the other members posts that I read to her. I told her she needs to drive the car not sit in the passenger seat in regards to her treatment. I also told her to stay positive and dont let these things make her think she needs to give up so easy. I told her that if she needs a good dose of positivity to give me a call... :)

I just want her to see that she is not alone, that it is NOT all that uncommon to get the rash so early in treatment (this is only day five. Her fist dose was friday) and to see all the options she can try before giving up. I try to keep her focused on the positive and try to keep her as informed as possible to her options.

Thanks again for your post :)
~Sami

[Idyllic]

Incivek is still fairly recent so the doctor's lack of familiarity with the rash does not mean it is by any means rare - or unusual. The rash if it is going to happen usually occurs within the first four weeks. I think the % of people who got it in the trials was something like a whopping 56%.  I am sorry your mum went so many days without being able to do anything. Grrr.

You might want to find out exactly what the pharmacist is compounding for your mum's rash. It is not good to let this snowball, Your mum needs an oral antihistamine like Hyrdoxizine (Atarax) and a potent topical steroid.

Here is a thread that has a few posts about the rash from Pooh. She (and many others) had it and found they had to educate their doctors as well.
http://www.medhelp.org/posts/Hepatitis-C/stopped-all-meds--rash-and-anemia-continue/show/1763126

The rash is manageable. There is no reason it should spread any further is your mum has the right meds to contain it. Treating for Hepatitis C is all about managing the side effects.

http://www.natap.org/2011/HCV/telap_02.htm