Week 7 of Treament:
Tiny Bumps of Red Raised, Hyper Sensitive, Painful Itchy Rash on Torso, Shoulders . No sores in mouth or anywhere else. I have tried antibiotic cream, hydrocortisone cream and benadryl.
I was in the sun for a very short walk a couple of weeks ago and wore sunscreen, my neckline dipped a little in front but my back was covered, I have been pretty careful not to be in the sun, I don't think this is a sun reaction. This is about a week old, spreading. My oncologist PA suggested the benadryl which helps the itch but not the spreading. I will let my doctor know but in the mean time:
Please share your experience and what you did to get rid of it.
Im in week 7 also and this week Ive noticed a red itchy rash on my chest. anymore, I just figure that anything that feels bad or strange is from the drugs. Im amazed at how many there are, and they keep popping up all the time.
From looking at your other posts, it appears that you are on triple tx with Incivek. Both Ribavirin and Incivek can cause a rash. When my husband was on triple tx with Incivek, he had a moderately severe rash. It had raised welts, it was itchy, and it was hot. His skin was quite red in the rashy area. He used Eucerin body wash in the shower, took cool showers, patted his skin dry, used Eucerin moisturizer, took Hydroxyzine (a prescription antihistamine), and used Triamcinilone ointment (a prescription ointment). Sometimes he stood in front of the open freezer door or stepped outside in the night air. It eventually improved, especially after the 12 weeks of Incivek.
Talk to your doctor and ask for the two prescription medications. It's important not to let the rash progress before you treat it.
Hi, sorry you are going through this. Hopefully it will not get worse and turn into that incivik rash from hell. Treat the rash early and aggressively, don't let it get out of hand!
If you search this forum from several years ago there were many posts about the "rash". Different remedies people tried so they could stay in the trials . Rash subsided after stopping the incivik. Do what ever you can to stay on incivik for the 12 weeks.
Early in trials incivik was causing rash in at least 25% of people taking it. Even some talk of discontinuing trials and pulling the plug on Telaprevir (incivik). They must of tweeked the drug because rash happen much less and was more bearable.
Not sure if your doctors have treated a lot of HCV patients but if they have they would know the protocol. If not consult with a Hepatologist and Dermatologist.
Best of luck
I was prescribed Atarax for the itching when i treated.
I also used the Atarax. I did Victrelis, and think the sun did trigger my rash, though. But it was on my torso, and was welts, and then looked like a sun-burn, and then the itching was from my torso, up to the top of my head.
Sorry about the rash. The first time I got the rash, hydrocorizone or benadryl did little to nothing and my Dr'd np decided I was being a bay and refused to have Dr prescribe anything. Even though the rash covered about 70-80 % of my body. So, I took constant oatmeal baths (cool water), used eucerin calming cream constantly and gold bond medicated lotion as well. At times when it got really bad I just slathered olive oil or eucerin aquaphor. It resolve itself after about 4-5 weeks. The second time I got the rash, it was much itchier and nothing helped at all and I was getting hardly any sleep. I really just demanded that the Dr see me and prescribe fluocininide, thanks to recommendations here. It worked very well. Good luck and I hope you get some relief. Just keep moisturizing the heck out of your skin.
I'm at week 6 and started getting the rash around week three. I took the recommendations from this forum and requested a prescription for Atarax and Fluocinonide. The rash went way down in severity and stopped spreading so rapidly. I still have it, but I treat it with the meds and my nurse is watching it every week. I have some photos on my profile.
Good luck with your treatment and I hope you get the rash contained.
They tell you up front that over 52% of people on triple therapy will have rash. They also say to call doctor or clinical trial nurse & let know so they can help you with it. It is also important to eat what they told you and drink fluids. If you are on triple you had to have gone to a intake meeting where they should have told you what to do. When I was on ribavirin and interferon alone many years ago the ribavirin caused me to have rashes and sensitive skin plus sensitivity to light. Also you could also have singles which causes the most painful rash. CALL YOUR DOCTOR. Rashes not taken care of can be symptomiac of internal problems.
Here's what one member did for the very common rash side effect.
I'd like to mention anything with oatmeal is soothing and moisturizing for the skin. You might want to try oatmeal soap.You can take whole oats and put it in the blender to make a powder. Add it to your bath water.
BTW: I had to use only products good for sensitive skin while on tx. Try natural products without any added fragrance. Coconut oil and olive oil is good for the skin, too.
From MrRon Oct 07, 2011 .To: Everyone.
Sunday Oct 9th will be my lasy day of Incivek.. What a freakin ride... For your itching,blister's,hive's.......I got you covered..! Benadryl make's my skin crawl.. Nothing worked... OATMEAL ...!!! That's right plain old *** damn Oatmeal.. Take a cup of Quaker put it in your little hand held food processor with two tbs of Corn Starch.. Mix that baby up into a powder. Get a small bowl and maybe a pop stick. Mix it to say baby food consistency with water,little at a time - spreadable not runny otherwise you'll have yourself a real mess.. Spread on a layer with the pop stick or just your finger's. . Let it dry on your skin for 20 to 30 min. Don't touch it.. It may burn at first ,but that's the bad stuff gettin sucked out. Then it's gonna itch.Don't touch it.. The reward's coming. After it drie's stand in the tub or better yet go outside and rub it off. Try not to let the nieghbor's see ya ha ha . It will be rough and and you'll get to scratch... Rinse with cool water or a wet towel. If you get another spot paste it on there.You'll see those rashe's start to dry up within a few hour's.. You can even throw that whole cup into the bath tub and soak.. I mixed some up and kept it in a sealed container on the kitchen counter.My worst month was #2. . . .
I have had the bumps/itch since week 3 and was easily handled by a OTC cortisone spray. Then my doctor saw the rash at about 7 weeks and gave me Fluocinonide cream. It works great. He told me to use it often and lots of it and that we need to control this now and not let it get out of control. So I've gone through a tube easily and it does stop the itch and reduces the bumps considerably. I feel it's under control now. Hoping for the best!
Thank you all for your support, sharing of your stories and your comments of advise! I appreciate everyone of you. I did let my doctor know and I am using the triamcinolone cream and benadryl oral, it has taken the itch & pain away and decreased the intensity of the rash.
I have always used natural products but I am finding anything with a scent is nauseating for me. I use oatmeal moisturizer and aloe, vit e baby oils too.
The cream has been great!
I am amazed at all of the stories and sharing of support.
Thank you all so much. I pray for all of us to have and keep a SVR! Because I believe that is possible.
Good to hear things are calming a bit. Instead of benadryl, I preferred claritin since it didn't make me drowsy. I also avoided heat and sweating as much as possible. But not easy to do in Florida sometimes. Good thing winter is approaching. Hot showers and baths were also a big nono. Good luck moving forward.
The heat was bad! I took cool baths all winter. The hot water soak feels good for the aches, but then you pay for it. I stayed cold as I could, which is easier with low hgb. haha. The 2 things you are using got me through all 43 weeks. I used straight up olive oil a lot as well.
I too had always used all natural and they made itching worse. Dr. Bonner's liquid soap was the best for bathing. Just think, it will soon be a distant memory.
I deeply appreciate everyones responces. I couldn't get a RX for Atarax from the doctor so I will get a dermatologist referral tomorrow, the rash is spreading with sporadic single itchy bumps to my limbs & scalp. The Benadryl is ok I guess. I have been running hot with my core temp above normal. Today a low grade fever. Perspiration makes it worse, which happens at night. Do you moisturize over the Rx ointment?
Lastly it is really hard for me to pick a best comment because you are all so wonderful and full of knowledge to assist each other. Thank you for your support.
I was on triple therapy with incivek 1 year ago. (tried Pegasys & Ribavarin 3x before w/temporary success.) After 4 wks, this time, I developed a rash with nausea. The rash continued to get worse. It was on torso, legs and arms. I tried benadryl, lasix and Triamin.ointment. Nothing worked. After 7 wks. it started to show on my face, hands and soles of my feet. My temp was running 101.8. Everything was swelling up and I went to the ER and was admitted. I stopped all hep treatment (duh!) My PA said I was on the verge of Stevens-Johnson syndrome which can be fatal. I was in the hospital for 3 days with IV lasix and benadryl. Also IV isomedrol and 2 blood transfusions. After 3 days was discharged on Prednisone and Percoset for the pain. The worst part were sores on perianal area that must have gone up inside as well. A bowel movement felt like I was eliminating shards of glass. Went to dermatologist. He gave me triamcinolone acetonide cream 0.1% for all over and balneol ointment for perianal.
PLEASE don't wait if symptoms get this bad. A year later skin is fine but my hep c is still kicking. I was told that 3% of patients get this reaction. Lucky me. Good luck to you.
I went to a dermatologist and had two biopsy's taken this week. She gave me the 3 new RX. She did n't feel it was the SJS, but I have it everywhere (except on palms, bottomof feet, mouth & eyes), I itch terribly, I run hot with temp around 100 -101. If I start to swell I will go to ER. I saw my Hep doctor today and he said just get through 4 more weeks. Then I am done with the incivek and things will get better. I pray the meds will keep everything calm, I think that's what they are praying too.
Thank you for posting.
You are in my prayers and thoughts. I was disappointed I didn't finish but please listen to your body and don't worry about what the doctors say. I was grateful my docs listened to me. This is such a new medicine and sometimes I felt like we are the guinea pigs. I will be looking for your posts and hope all goes well.
Sorry you are having such a tough time with the Incivek rash. What are the 3 new prescriptions that the dermatologist gave you? As far as your other question, I would probably use the prescription ointments, creams first, and then moisturize after or in between. Also be sure to drink lots of water.
Terry I am sorry you did not get to finish tx. but happy you survived SJS. I pray a new combo will become available for you soon so you may be cured.
Advocate: The three meds I am treating rash: Zyrtec 10mg BID, Hydroxyzine 10mg BID, Doxepin 20mg HS and continue with theTriamcinolone Cream 0.1% twice a day.
The itch can be excruciating at times. I find even with the meds it is spreading, but the severity of appearance isn't. I try to wear loose cotton clothing and watch not to sit against anything because my back needs air circulation, the hotter my body gets the more severe the rash. My body already runs too hot.
I have continious headaches, nausea and fatigue. This has been brutal for me. I am getting procrit injections now too. I am so thankful I have only 3 weeks left of incivek and plan on staying positive to help me get there. I don't know how anyone could work with this and my heart goes out to anyone who has too. Thank you all for your support, advise and listening to my complaints. I wish you all a very good Thanksgiving, I am thankful for you!
"The three meds I am treating rash: Zyrtec 10mg BID, Hydroxyzine 10mg BID, Doxepin 20mg HS and continue with theTriamcinolone Cream 0.1% twice a day. "
I had a bad rash, probably considered moderate, but I would hate to have the severe if mine was moderate, LOL.
Just for the record, the Zyrtec, Benadryl, and over the counter steroid creams were totally ineffective for me. I may as wel have been eating M&Ms and putting water on my skin.
It is quite possible that you need higher doses of some of the meds and/or an altered regimen. I tried a lot of things and it was not until I got Hydroxyzine 50 mg every 6 hours (in addition to the Fluocinonide ointment and the clobetesol soln) that the rash was finally brought under control. It was the higher dose of Hydroxyzine that did the trick and got the rash under control.
One other word of caution ..... this may be an Incivek rash and may go away after finishing the Incivek. However, the rash could be from the Ribavirin also, and you will still be on Riba for several more weeks.
I was on Tx for 48 weeks. I got the rash about week 10. I had the allergic reaction for the duration of Tx . I am 12 weeks post end of Tx and I am still dealing with these issues. It is under control, but not totally gone. I am still on the Hydoxyzine and also on some steroid creams and ointments, all prescription.
My husband found the rash to be excruciating at times too. It was tough. The only thing I can suggest is try to take the Hydroxyzine as often as the prescription allows, avoid sun/heat/hot water, moisturize and drink water. I hope you can make it to the end of the Incivek, and hopefully it will improve after that.
Thanking for your continued help. Your statements led me to do a lot more research. I found the hydroxyzine hcl dose I was on was minimal. I tracked my administration schedule and peaks of being miserable. I took my research on peaking in 2 hours, lasting only 4-6 in the body with my documented misery itch cycles to the dermatiologist. She increased my schedule to QID while awake and the dose alternates 25mg & 10mg. I see her next week. If that doesn't work she will go to 25 mg QID, she has also talked about medicinal marijuana pills and prednisone.
Prednisone is controversial as steroids may effect SVR. Different researchers say different things.
But I am on my way. Only 2 1/2 weeks now left of Incivek! With my Pegysis decreased to 90mcg sub q weekly and my procrit shots two weeks in a row, I am feeling almost normal, almost,LOL! Thank you Again! I wish everyone a great week-end! I am up & dressed and not feeling like a zombie today, it's a good day!
Keeping track of your episodes must be a great help to your dermotologist. You are very smart to be under the care of that specialist. I did not see a derm. for about a week after being hospitalized and off the tx.
I'd go with the pot pill over the prednisone anyday. And I was never much of a pot smoker. But the prednisone was really difficult for me. It ounds like you have great determination and a good understanding of what is going on. I'm rooting for you!
As everyone notes, the rash is very common and you MUST get it under control before it gets really bad. The doctor must prescribe something to keep it under control. My doctor gave me fluocinonide which works great. It keeps it under control and even reduces the bumps. They never go away totally but it really keeps it from getting out of control. He also gave me hydroxyzine hcl 25 mg. This is amazing and when you can't stand the itchy any longer, you take these and away you go.....sleep! They knock me on my butt but boy what a relief. I'm finishing week 13 now so incivek is over but I still have the bumps & itching. I'm hoping after a few more weeks, they'll be gone but we'll see. Good luck and make sure you get these under control. I've seen pictures of some rashes from triple therapy and you don't want to get to the point where you have to stop the program because of the severity of the rash.
Do check or ask your derm to check on the contraindications of oral steroids with Incivek. I can't remember all of the details. My husband used Triamcinilone ointment, which is a topical steroid. It helped. I do remember that the oral steroids are not recommended with Incivek, but I also agree with everyone that it is critical to address the rash before it becomes "severe", per the Incivek guidelines, and may lead to having to discontinue tx. Best of luck, and keep us posted.
I looked it up for you. Incivek increases the effect of oral Prednisone and it is not recommended that they be used together. You will find this information in section 7 of the prescribing guidelines for Incivek:
You might be interested to google Telapravir twice a day,what you will find if you do that,is, very cerdible qualified studies done by reputable medical pharma recearch sites wich have proven pretty much conclusivly, in studies, that people who take Telaprevir twice a day, have the same rate of SVR as people who take Telaprevir 3 times a day. We should be asking the proffessionals is this the truth as I think many more people would be able to handle treatment,but anyway Google it and read the many,many,many studies and trials that have been done ,and, I would like to Know what you think as I am about to do Telapravir.
My Rash Pictures now on my profile. Dermatologist raised the Hydroxyzine hcl to 25 mg QID, Doxepin to 100mg at bedtime. I am still to use the Triamcinolone Cream BID. I will be getting the medical marijuana pills.
I learned: The rash looks different on different parts of your body. Drink a lot of water everyday because not only do your TX. meds dry you out, the antihistamines dry you out and the rash runs hot and you evaporate fluids too., don't scratch you will scar and it makes the itch worse by releasing more histamine, the rash will increase your body temperature and be warm to touch, at night due to hormones the rash feels like fire, wear cotton breathable clothing, nothing tight or binding. Keep cool with cool showers, decrease clothing, don't sit or lay on furniture that doesn't allow your skin to breath my polyester overed couch increased the heat in my rash and made it itch even more, my husband brought in a sling patio chair for me to sit in. Oatmeal, olive oil, hypoallergenic body sensative lotions & soaps help soothe the beast. Take meds as prescribed and ask for more because the doctors will start you on very low doses to see how you handle it as a precaution only. The Rash that can be life threatening "SJS" will cause your skin to peel off, cause sores in your mouth, on your lips, in your eyes and your lymph nodes will swell in your neck, your organs will be tender to touch. It is really important to get a dermatologist involved who knows about Hepatitis C and the rash, most of us get it. I'm on week 11 only one more week on Incivek and if my rash is still here I will get the prednisone because my whole body except for palms, bottom of feet, mouth, eyes are covered.... It's awful but treatable, Treat EARLY!! See My Pics on My Profile!
I did not have the "SJS" Rash.
What I meant to say is: If you have a rash appear, get seen right away! Because if your rash is the "SJS" you will want to stop treatment as this rash is dangerous and can be deadly. Stephen Johnson Syndrome starts with a sore throat, fatigue and fever. It continues with skin peeling off like a bad sunburn and open sores on your lips and in your mouth. Only a very small percent of people get this. So if you get a rash it probably isn't this but you want to be sure and you want to get relief, get seen by your doctor and ask for a referral to a dermatologist who knows rashes so you can get the best care possible.
So sorry to see you struggling with the rash. After seeing your pictures, it brings back memories of my rash which wasn't nearly as bad. You've gotten some great advice above and seem to be doing all the right things with the guidance of a good team of docs. Hopefully the cooler months in FL will help as we approach winter. Only one more week of Inc and maybe this will be all behind you. Speaking of behinds, hope that's not an issue, too. lol. Good luck and hang in there. :)
I am very thankful for the cooler weather here! I couldn't imagine this rash in hot weather, I would definately stay in the ac all day if it were. I really hope it will go away after I stop the incivek.
I had to laugh about the behind area statement you put. Do you know Johnny Cash's song: "Ring of Fire"or Beyonce "This Girl is on Fire", well yep, that was me. It's not so bad now.....thank goodness... and Thanks for the laugh :)
My rash was every bit as bad as that. I can truly say I know how you feel. I had the worst of it for 31/2 weeks.
I don't know how really, but I got through it and you can too.I did not take pics of mine because I didn't want to remember it. Mercifully, My brain will not allow me to remember. That was between April and June. Hang in there..Mark
I looked at your photos and you definitely have what the Incivek website would call a moderate rash, but it's similar to my husband's rash. Thankfully, his doctor didn't label it as severe and pull him off Incivek either. Did you check with the derm about the dosage of Prednisone? I sent you a link above so that you can show the derm that the Incivek will increase the effects of the Prednisone, so the dosage of Prednisone may need to be lowered. I don't know.
On this forum, the behind problem has also been called "shards of glass" and "flaming butt". My husband had that horrible side effect too.
Just to forewarn you, the rash may not instantly disappear when you stop Incivek, but it will gradually improve.
I think you are right, there are studies that show Telaprevir being effective BID meeting SVR. It is a good case to talk with your doctor about. It has to be an individual decision. Choosing TX. is a very Brave thing to do. It is scary, but educate yourself on all the meds nd side effects and be prepared to handle any of them. I had asked for TX. for several years but the Dr. I had went on my liver enzymes, which were normal, I switched doctors because I wanted this invader out of my body at all cost. I want my life back. I asked for the strongest medications. I started on Telaprevir TID because it had the most success rate. I have had to adjust meds as I went along due to side effects. Research has proven tht Ribavarin dose can be 600mg a day and be effective in triple therapy, that is the dose I am on with the 750 Telaprevir TID and the Pegysys down now to 90mcg sub Q once a week. At 4 weeks I had "Undetectable"
I believe as physicians will decrease doses as they gain more trust in the ability of the decreased meds resulting in SVR. Talk to your doctor and make the best choice for you. Let me know how you are doing. I wish you the best of luck!
Week 12 of Incivek starting today. 8 Wk. Quantative Level: undetectable. I am very happy about this!! Dermatologist RX Merinol 5mg BID for the itch & will hold Prednisone until after week 12 and incivek is done. I researched and could not find any indication prednisone would interfere with ribivarin & pegysys. Has anyone heard of any warnings?
Now the dermatologist feels I may have med induced Lupus and that is the cause for the rash. The dermatologist has already done two biopsies and is talking of doing more blood work and more biopsies. It is my understanding that the Lupus/Rash most likely will go away when the med is stopped that causes it.
I would like to see if sympr]tom disapears after I am off the meds. before I do any more.
Hope everyone is having a good week.
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