Hep C Discussion Forum

Margo · Senior Member

RE: Rash ?

LUV2RYDE · Senior Member

It's so good to hear "UND"...Congrats!

ordinary · Member

I had to drop incevik because of rash and they switched me to Victrelis. This was due to the fact that I cleared the virus right away (can't remember exactly). My incevik rash was becoming systemic (see posted pic on another rash post).

Now, I have 4 more days of treatment and am still UND!!

Margo · Senior Member

Oh, JoAnne, feeling your pain like no one else...I'm just like Kannon here, eating Benadryl a d Zyrtec pills daily . I have to try Allegra, Zyrtec doesn't help anymore. Horrible feeling, pricks and needles that radiate throughout the skin! Lately my palms and soles of the feet are at its worse. I have a feeling it's from dehydration, I buy water with electrolytes now, one day seems better but then it catches up twice as bad...hope you feel better. How can such a miracle drug bring so much pain and misery...

kannon · Member

I found this suggestion from someone who had the rash.

have had a mild rash all through treatment and it has been taken care of by benadryl and hydrocortisone cream. About a week before I finished Incivek (so about 2 and 1/2 weeks ago) I got a real bad rash on my forearms. It was bright red, raised (like hives almost), and confluent. It kept getting worse and my thighs got it too as well as my abdomen. I finished Incivek on Sunday, 12/18. I started taking more benadryl. By Friday Dec. 23, neither the hydrocortisone nor the benadryl was helping. It was spreading and itching constantly.

It looked like the moderate rash on this site:
http://www.incivek.com/hcp/assess-and-manage-rash

I went to see the doctor and was prescribed Fluocinonide ointment. I also started taking zyrtec once a day in the morning and kept on taking the benadryl 50 mg at night. It took 2-3 days to really make a dent in the bright redness but the itching stopped almost immediatly after using Fluocinonide (using it am andpm). It is still there, some darker red areas and still some bright red areas, but somewhat less confluent and definitely not as raised.

Personally, I think I should have started on this regimen about a week earlier than I did so the rash would not have progressed so far. Regardless, it is working and that is why I am posting. I just thought it might be helpful for others with rashes to see what is working for me. It might work for others (although I know it won't work for all).

(And my empathy definitely goes out to everyone who has had bad rashes throughout treatment. I was lucky to have such a mild one for so long and also I am lucky this regimen is working.))

JoAnneh · Guru

My rash returned in less than hour after bath! Going to bed! Hope tomorrow is better
Trying Zertec tomorrow
JoAnne

JoAnneh · Guru

My rash has Gone wild! Burning, itching all over. Some red patches,
Some skin like sand paper, some skin just burning hurting!
Rash out of control. I remembered reading about apple cider bath and
With nothing to loose like Scout and Marktrux me ruined I just got out of the tub.
Pain is a 2-3 now and it was a 8-9!!!
I put lotion on and pain is so much better!
Thank goodness for this site
Will keep u posted on rash
JoAnne

Judy S · Senior Member

Thanks guys; I will try the ACV. I've been using Triamcinolone cream, lots of Curel lotion, Gold Bond lotion at times, and Calamine lotion. My neck and chest are usually pink from the Calamine lotion; I look weird, lol. I apply it with cotton square. But then have to apply more lotion as it is drying so I feel "layered", yucky. And still itch. And my thinning, flyaway hair itches my neck even more.

I've had to switch to Biotene toothpaste and mouthwash, too. All of a sudden, normal toothpaste and mouthwash are FAR too strong. And they're making my lips like lose a layer or something. I've been a vaseline and chapstick addict all my life (hate dry lips) but everything is so extreme, now!

I have inflammation constantly. My skin is now puffy and has creases. Under my eyes, my neck, chest, inside elbows. Looks so different, gosh. Freaks me out. Hurts to sneeze; my nose and throat are swollen.

Scout · Senior Member

Yep 2 cups of apple cedar vinegar in a warm bath does wonders. My wife found this for me and it worked like a charm. A life saver.

JoAnneh · Guru

Asp my lips were so blistered and Vaseline, chap stick and Carmex worked. Used constantly. Biotene toothpaste and mouthwash helped w mouth sores.

JoAnneh · Guru

My rash got ugly fast on my arm!
What has worked: Triamcinolone Acetonide on rash let stay for few minutes
Than lather Vaseline over it. My NP recommended it.
Oh and no scratching!
I will definitely remember the apple cider too.
Elizabeth hoping ur husband better real soon!!
I am in week 6. So glad he has a wonderful spouse like you!
JoAnne

marktrux · Senior Member

Last week i wrote about how my rash had become unbearable. That night i kept looking around www. trying to find help for the rash. I found a site that recomended soaking in a tub of water with 4 to 5 cups of apple cider vinegar. Not having anything to loose, and never being accused of under-doing things.I soaked a cloth in ACV and rubbed myself down, head to toe (i wouldn't recomend this) when the fire went out i didn't itch for a few hours. I did the same the next a.m. That night the rash started to look better so i soaked in the concotion they recomended, and followed my regular rash routine. Within 4 days the rash was comletely gone, it's the most incredible thing i've ever seem. The acid in the vinegar does dry my skin, so i double up on the moisterizer and drink even more water. After some time the 4 to 5 cup mixture gets to be too strong for long term use and starts to burn the skin, so i cut it back to 2 cups, and this dosen't seem to burn as bad. i'm not saying ACV will work for everyone but it might help someone else. Good Luck!

elizabeth · Senior Member

Marktrux, that's pretty amazing. Kind of scary but amazing. You are one tough cookie! If this doesn't start improving rapidly, I may start dousing my husband with ACV. Glad you've gotten some relief though! The PA said this should be gone within a week after stopping the incivek which would be tomorrow. Well, she was WRONG. Again.

-- Edited by elizabeth on Wednesday 20th of June 2012 12:58:15 AM

elizabeth · Senior Member

Thanks, Alan. The prayers are appreciated and returned.

Judy, I can't imagine how you tolerate that. Bless your heart.

You all go through so much. I'm so impressed by the fortitude and determination and strength that all of you have. I pray that each of you has an easier time and that your treatment results in a cure.

Judy S · Senior Member

I'm so sorry, Elizabeth. Seems none of us can escape the rashes and itching. It drives me INSANE. Your hubby's sounds particularly bad. I'm not on Incivek.....I'm doing PegIntron, Riba, and Victrelis.

I have 4 different types of rashes at various times. From each of the 3 drugs, but the PegIntron is worst for me. (Dr gave me a 1-week break and itching was Much better.)

I've had welts, a few itchy raised spots, hundreds of red, painful spots, and then teeny, weeny sandpaper-like spots on backs of my hands and feet, and some on legs. Newest? An invisible, Super itchy rash on my throat, neck, chest, stomach.

What I use:

Zyrtec, Atarax (Hydroxyzine) tablets 10 mg, Triamcinolone Cream 0.5%, Fluocinonide Cream 0.05%, Calamine Lotion, various Gold Bond, Curel, & Cetaphil lotions.

I'm Still itching. I give up. Just when I think it's subsiding, it comes back with a vengeance.

news · Guru

A few others have had to drop Incivek early for severe rash symptoms. At least one is still UND many weeks later, just using peg and RIBA. This could be a blessing in disguise. I will pray for him. You two need something good to happen. Alan

elizabeth · Senior Member

The PA was shocked when she saw my husband's rash today -- she wanted to admit him. She's concerned it's spreading into his throat. Has anyone heard of that? He talked them out of being admitted but needless to say he's off the Incivek now. They did more labs so hopefully will have the results this evening or tomorrow a.m. He's supposed to take benadryl every 6 hours, plus Claritin twice a day plus zantac twice a day to try to get the rash knocked down. Steroid cream for itching. 911 if it gets worse. Back to the doc Friday. Scheduled another ultrasound and talking about another liver biopsy. Really not liking the sound of this. And he's so miserable -- can't eat, not enough energy to walk and one giant red raised welt from his scalp to his toes and everything in between. Anyway, thanks for letting me whine. I'd be lost without this outlet and he appreciates the info you all provide.

elizabeth · Senior Member

Thanks, Margo. Gold Bond is one of many he's either using or has tried. It seems any relief they give is pretty fleeting. Rash is a lot worse even overnight (didn't it would be possible to get worse) so I'm glad we're seeing the doc or PA today. I hope they can do something other than just stopping treatment.

Margo · Senior Member

elizabeth wrote:
Bless your heart, Shaun. That sounds terrible. My husband is eating benadryl like candy. I've bought every anti-itch cream and lotion in the pharmacy and today the PA sent a rx for the triamcinolone acetonide cream which seems to help for a short period. The PA wants to see him tomorrow. He wants to continue treatment but it's sure hard to watch him being so miserable and not be able to "fix" it. I guess we'll see what they decide tomorrow.

Elizabeth, I also find a great relief from Gold Bond lotion. I apply everyday after shower and it feels so cool and good, besides it's not greesy as other lotions.

elizabeth · Senior Member

Bless your heart, Shaun. That sounds terrible. My husband is eating benadryl like candy. I've bought every anti-itch cream and lotion in the pharmacy and today the PA sent a rx for the triamcinolone acetonide cream which seems to help for a short period. The PA wants to see him tomorrow. He wants to continue treatment but it's sure hard to watch him being so miserable and not be able to "fix" it. I guess we'll see what they decide tomorrow.

Shaun · Senior Member

elizabeth wrote:
Suzanneaz wrote:
my rashes grew as time went on. Its horrible. I will take benedry occassionally against my Dr and Family Drs wishes.
So the rash continues even after the incivek is finished? That is horrible news! Sorry you're still having problems.
Why doesn't the doc want you to take benadryl? That's one thing they told us to try when we had the "indoctrination" meeting before starting tx.

Yes, in some cases it does continue after Incivek. When my Incivek ended my rash cleared up for about a week, then returned. I learned to adjust to it. Here is what I did:

Every day my wife would slather my back with 1% hydrocortozone creme. I would slather the rest of my body (where the rash was) with more cream. When the itchies popped up, I would dab them with the creme. If you scratch, it gets worse.

When I took Benedryl orally, it would relieve the itch for hours. Benedryl creme worked well for the rash also, but it's more expensive than the hydrocortozone creme.

The trick is to stay on top of it. Dab the itches as they pop up and do NOT scratch. When you put on the creme, the itch will subside in a couple minutes and the red would fade in an hour or so.

For most folks, it goes away after the Incivek.

DON'T SCRATCH!!!

marktrux · Senior Member

Yes, my Dr. told me to call him if i had any rash problems, because they had better treament options now. When i did call him, it took his nurse 2 days to call me back, and all she told me was to take zyrtec. I already knew that.

elizabeth · Senior Member

Suzanneaz wrote:
my rashes grew as time went on. Its horrible. I will take benedry occassionally against my Dr and Family Drs wishes.

So the rash continues even after the incivek is finished? That is horrible news! Sorry you're still having problems.

Why doesn't the doc want you to take benadryl? That's one thing they told us to try when we had the "indoctrination" meeting before starting tx.

elizabeth · Senior Member

marktrux wrote:
....They don't really itch so much as hurt, like a burn. I take Aveeno soaks daily, take 2 zyrtec a day and eat benadryl like M&M's, it must be helping(???) I'm reluctent to see my Dr. because last time on Peg/Riba treatment, he pulled me off treatment at my 8 week checkup, due to the rash. I'm sure I'm not gonna be able to complete the 48 weeks of treatment, but I'm not ready to stop...yet. In the last 10 years, I've seen 6 people around me die from this disese, the latest just 9 days ago. I don't want to die like that! So I just keep trying to get thru 1 more day, then 1 more day, etc. Hopefully I can make it long enough to acheive SVR.

I'm so sorry you're going through this too. Good luck on being able to finish and on it being successful this time! You pointed out our worst concern -- that they'll stop his treatment and all this will have been for nothing. He's determined to keep going but I don't think I could under the circumstances.

Does anyone else have a problem with their doc or PA or nurse not calling you back? They say to cal if "x" happens andd then they don't return the calls. This is so frustrating.

Suzanneaz · Veteran Member

my rashes grew as time went on. Its horrible. I will take benedry occassionally against my Dr and Family Drs wishes.

marktrux · Senior Member

I'm on day 11 of treatment and the rash started on day 4, it's covering my entire body. Mostly just welps, not to itchy, except my arms and back of hands. There it looks like I'm a chemical burn victim. Huge, raised, red patches that are starting to develope small blisters. They don't really itch so much as hurt, like a burn. I take Aveeno soaks daily, take 2 zyrtec a day and eat benadryl like M&M's, it must be helping(???) I'm reluctent to see my Dr. because last time on Peg/Riba treatment, he pulled me off treatment at my 8 week checkup, due to the rash. I'm sure I'm not gonna be able to complete the 48 weeks of treatment, but I'm not ready to stop...yet. In the last 10 years, I've seen 6 people around me die from this disese, the latest just 9 days ago. I don't want to die like that! So I just keep trying to get thru 1 more day, then 1 more day, etc. Hopefully I can make it long enough to acheive SVR.

Scout · Senior Member

My rash got pretty bad about week 9 of incevik. I was perscribed doxepin for the rash itching and triamcinolone acetonide for the rash. Both worked really well. I'm at 14 weeks right now and the rash has pretty much gone and I'm not itching like crazy. I still have dry patched but a good lotion and vinegar bath help a lot. I take in a lot of water and that helps as well.

elizabeth · Senior Member

Thanks, Alan. Good description about the itching being a living thing. It's about to drive him over the edge, I think. Just 2 more weeks on the incivek so hopefully that will be the end of it, but this kind of itching for 2 weeks would be hell. I really hurt for all of you that have or have had to go through this.

He actually had a couple of good days week before last -- wasn't taking the riba and actually had an appetite. Then the rash started. Then they put him back on riba. Now he's back to not eating and too weak to do anything but move from the bed to the sofa to the bathroom and back.

For all of you wonderful people, THIS SUCKS! Though we're trying to remember to be thankful that there is a treatment.

news · Guru

In my case the itchiness and large patches of rash were caused by Incivek. In fact, everything evil in this world was caused by Incivek. In post-Incivek treatment I get the occasional red spot, perhaps with a very mild itch, but usually not. During Incivek, I used warm Aveeno baths, hydrocortisone cream, Benadryl tablets, Gold Bond cream (for around the house only....smells too strong for the real world), lots and lots of drinking water, and when it got real bad I would use an ice pack just to get it stopped, then be real careful not to get it started again.

Along with the Incivek butt burn I also had a few times when an intense itch would occur. This itch was a living thing. But the normal butt burn treatments seemed to knock it out.

Alan

elizabeth · Senior Member

Thanks Margo and Joanneh. I'm calling his doc today to try to get the trriamcinolone acetonide cream. Unfortunately she hasn't been too good about wanting to add anything so I'm not terribly hopeful. We've tried the claritin and will check today to see if zyrtec ingredients are different. We've tried topical anti-itch creams including the hydrocortizone creams. He'll get some relief from the benadryl for maybe an hour.

Hopefully this will go away after he finishes the incivek.

JoAnneh · Guru

I use Triamcinolone Acetonide cream 0.05%
I use Benadryl. Margo mentioned the rest of ideas I have!
Oh refreshing lotion w aloe helps some too
No sun or heat! Natural fabrics.
Good luck getting it under control.
My rash stays at a 3-4 but there was a huge reaction
When I first started medicine.
Hope rash better soon for y'all
Joanne

Margo · Senior Member

The rash is probably from Incivek, Ribavirin can give small, bumps here and there. Someone has recommended Hydroxizine for itching at night and Zyrtec at day. I take Zyrtec everyday and it does help with the itching. Fore the rash only Hydrocortizone cremes, warm Aveno Oatmeal soaks and again lots of water to flush it out. Good luck, I hope he feels better!

elizabeth · Senior Member

I did run a search and tried not to bother with another question, but the responses seemed contradictory. My husband just developed the bad rash in the past week and nothing is helping with the itching. Is the rash from the riba or the incivek or both? He had been off of riba for 2 weeks and just started again today so seems it wouldn't be from that unless it's from what was built up in his system. He's starting week 11 so will be finished with incivek soon and given a choice, we're hoping it's the incivek and the rash won't last for the duration of treatment. Any insight would be appreciated.

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