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Avatar universal

Incivek weight gain and rash

I started my triple therapy treatment on February 1, 2012.  Within 3 days I had a rash that started on the top of my right foot.  Twelve hours later my inner thighs, and most of the right side os my body was covered in this itchy rash.  I could not stand it and went to the emergency room.  Unfortunately no one at the ER was familiar with the new medications and didn't know what to do for me.  I was already dehydrated from the diharreah for three days.  I was given IV's and atarax and told to follow up with the liver specialist.  When I did follow up with the liver specialist a week later he did not even examine me.  He only replied "I told you the treatments were harsh".  He did not perscripe anything for me but Clairitan D.  A week later...unbearable...whole body covered and my right hand was so swollen fron the rash I could not close my hand at all.  I go to the emergency again.  they tell me my white blood cell count is 2.3.  The give me IV fluids.  Again no one on staff familair with the treatment or the incivek.  They put in emergency call to my liver specialiast who told them to release me that this was just a side effect and nothing could be done about it.  However, the ER doctor felt so bad for me.  She wrote me a perscritption for Atatrax to be taken 4 times a day and some cream.  Again, I followed up with my doctor.  This time I went in sleeveless and looking just like I felt...death warmed over.  I could tell he was perplexed himself and maybe had not seen this side effect in person.  I told him I wanted to quit the treatment.  He told me no to hang in there and perscribed some powder drink called Cholestyramine.  He explained this would bind the bile in my intestines and help it pass through my body.  He said this was coming out of my skin hence the rash.  To add insult to injury I have gained 20 lbs on this treatment.  It is terrible.  I am 5'7 and started at 150.  I'm 170 and growing.  I am not happy with my doctor or the lack of concern for my side effects.  YES...THE TREATMENT IS HARSH.  However, everyone should be able to have what meds they needed to help comfort these side effects.  I can't even get refills called in less than 10 days.  It saddens me that I had to use this doctor but he was the only liver specialist that would except my insurance.  I'm stuck with him and his staff.  I'm depressed and not myself.  Just called his office to see if my lab work was in.  Nurse said if the doctor wanted to see me after reviewing the labs she would call.  She ask me how the rash was...I told her my right arm is swollen terribly bad and I still have full body rash.  End of conversation.  I have tried every thing.  Oatmeal baths, tons of water to hydrate, eating veggies, yogurt, nuts.  I don't like who I am becoming.  Thanks for listening.  Would appreciate any help on what I can do.  I am assuming a white blood cell count of 2.3 is normal for the treatment.
35 Responses
1972385 tn?1343830676
I had the same sides as you.I called my dr and saw me.I had the rash from head to foot at week 11 on Incevek.He wanted to admit me to the hospital but I said no.I wanted to continue with the tx.A week later complications forced me to quit tx.After 3 days in the hospital I called the Incevek nurse.Her name is Rainer at 866-458-9246.She can be very helpful and answer your questions.For the itching I used ice.It deadens the itch.Use ice packs or cold clothes from the fridge.Some of us have had a hard time with the sides but continued anyways until a dr,says to stop.Good luck and keep us posted.
1972385 tn?1343830676
I forgot to mention I gained  weight but came off after stopping Incevek.
Avatar universal
Thank You.  I am putting wet cloths in baggies in the freezer now.
Avatar universal
Thanks for sending a light to the end of my tunnel.
Avatar universal
Sorry you are going through this.

This is unconscionable that the doctor that is in charge of your therapy is not more informed with the proper care and treatment of his patients.

I would follow michael's advice and call Vertex immediately to let them know about how this doctor is prescribing their drug and not adhering to proper protocol  on  "adverse events "

Also possibly copy this below and take it to him and  demand he  himself contact Vertex immediately to garner further direction from someone that knows  what they are doing and take immediate action on this .

This is his job and why he is being paid..

It is so unfortunate that many of us need to be so diligent on our own care because of lack of understanding and knowledge about this treatment from these doctors.

Best to you..
Will

http://www.clinicaloptions.com/Hepatitis/Journal%20Options/Collections/2011%20JO%20Hepatitis%20Volume%205/Volume%205,%20Issue%201/Pages/Page%204.aspx



Rash
Data from controlled clinical trials of telaprevir indicate that approximately 56% of patients experienced rash.[1] Telaprevir-associated rash is eczematous, associated with dry skin and pruritus, and in some cases has a maculopapular component. The rash is similar in appearance and histology to that observed with peginterferon/ribavirin but can be more extensive or severe. Rash onset typically occurs within the first 4 weeks of telaprevir treatment, with a median time to onset of 25 days; however, it is important to recognize that rash can develop any time during telaprevir therapy.[1,2] In most cases the rash does not progress and it tends to resolve gradually over weeks after telaprevir is discontinued. At our center, my colleagues and I have seen some transient cases of telaprevir-associated rash that resolved while patients continued to take telaprevir.

Severe rash, which is generalized and covers more than 50% of body surface area or which shows evidence of skin breakdown (eg, vesicles, ulcerations), was reported in 4% of patients receiving telaprevir in controlled clinical trials.[1] Potentially life-threatening events, including Drug Reaction With Eosinophilia and Systemic Symptoms (DRESS) syndrome and Stevens-Johnson syndrome, were rarely reported. An analysis of more than 1200 patients treated with telaprevir during the clinical development program identified 11 cases of DRESS (< 1%) and 2 cases of Stevens-Johnson syndrome (< 0.2%).[2] These diagnoses were judged as probable or possible by a dermatology expert panel. On a positive note, these syndromes resolved with telaprevir discontinuation in all cases. Thus, although severe events can occur, they are quite rare. Nevertheless, clinicians need to remain vigilant for the development of these syndromes.

Clear guidance for managing telaprevir-associated rash is detailed in the prescribing information.[1,2] Management of rash that is mild (localized) or moderate (more diffuse, but covering < 50% body surface area) involves continuing all medication, monitoring for progression, and using symptomatic therapy consisting of topical corticosteroids and/or oral antihistamines. Systemic corticosteroids are contraindicated given the potential for drug-drug interactions with telaprevir. For severe rash, the management approach is to discontinue telaprevir, continue peginterferon/ribavirin, and monitor patients closely over the course of 7 days. If the rash does not improve or worsens, consideration should be given to discontinuing ribavirin and/or peginterferon. If a patient shows evidence of either DRESS or Stevens-Johnson syndrome, all treatment should be immediately stopped, with favor given to patient hospitalization and consultation from a dermatologist. It is very important not to reduce the dose of telaprevir in response to rash—or any adverse event, for that matter—as dose reduction may result in the emergence of telaprevir-resistant HCV variants.

This rash management plan was implemented in the phase III studies of telaprevir with success.[2] Although the overall incidence of rash remained similar in the phase III trials to that seen in the phase II trials, the rate of discontinuation of all medications due to rash fell to 1.1% in the phase III trials compared with a rate of 6.2% in the phase II trials. Thus, by using this management plan, most cases of rash can be effectively handled, allowing patients to remain on telaprevir therapy and maximizing the potential response to treatment.


I wish you the best...
Will

Avatar universal
Thank you for the info.  I have been in touch with Nurse Betty on several occassions who suggested I go to the ER.  She has told me everything under the sun to try to get some releif.  I am going to research these different rash issues you sent and make sure I am not in danger there.  Again thank you.
Avatar universal
Here is a link to follow with some pictures of the rash..hope that helps..

Will

http://hepatitiscnewdrugs.blogspot.ca/2012/03/iincivek-help-recognizing-rash.html
1815939 tn?1377995399
I agree with what has been stated above.

I got a bad rash in week 10. Hydrocortizone and Benadryl did nothing. I was eventually prescribed fluocinonide ointment (a steroid ointment much stronger than anything over the counter), Hydroxyzine at night, and Zyrtec in the am. They have helped a grat deal although I still have the rash 3 months later (just in different areas because it moves around).

I am including links to photos of the rash and how it is categorized (mild, moderate, severe). The treatment for each stage is listed too. Maybe your doctor needs to see the photos too.

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

I hope you can get better care than you have been getting.
1815939 tn?1377995399
Oops, not sure how my last post went to Will. It was supposed to go to the OP.

I agree with what has been stated above.

I got a bad rash in week 10. Hydrocortizone and Benadryl did nothing. I was eventually prescribed fluocinonide ointment (a steroid ointment much stronger than anything over the counter), Hydroxyzine at night, and Zyrtec in the am. They have helped a grat deal although I still have the rash 3 months later (just in different areas because it moves around).

I am including links to photos of the rash and how it is categorized (mild, moderate, severe). The treatment for each stage is listed too. Maybe your doctor needs to see the photos too.

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

I hope you can get better care than you have been getting.
Avatar universal
Yes Thank you.
Avatar universal
The rash will drive you crazy. I took luke warm showers with DR Bronners pepperment soap then rinsed with cool water. I would use pepperment lotion. Used Benadryl....keep the bedroom cool , I lived in cotton yoga pants and soft PJ. I gained wieght eating the fat for INC but have lost some it since compleating Inc I. am almost done and feel like I can get the rest off when I can get back to the gym.  Some times the doctors are cluless to the suffering.   Are you on an antidepressant, that can help you mood.  Drink lots of water LOTS. If you have diarrea ,eat things bananas rice. You could eat rice with butter for your fat. Keep coming back to the forum it will help when you feel like you can't go on. Folks here know what you are going through.  Good luck.  do not quit.
1815939 tn?1377995399
PS: I gained 25 pounds on Incivek but I have lost 20 of that (stopped Inc. 12/18). So you will probably lose it after getting off Inc.
Avatar universal
Hi pooh....Thanks for the direction,however the only rash I have right now is on my head.......from scratching it try to figure out what some of these doctors are thinking  :)
Will
Avatar universal
I am searching for peppermint products now.  I have looked at the photos and although I am not that severe today I have been both times I have been to ER.  I am sending these or taking these photos to my liver specialist and his staff.  They need to be informed.  I don't want anyone to have to suffer this way.  I am not on antidepressants.  I probably should be at this point.  Will check into it.  Do I need to worry about my WBC?  I dont even have a clue what my viral load was or is
1815939 tn?1377995399
If I was you, I would make a list of everything you want to talk about with the doctor. Otherwise, you may formget some things.

Get copies of all of your lab work. The doctor should have informed you what your starting viral load was and what it is each time they draw a viral load. The doctor should also be keeping you informed of your various blood counts (which should be drawn at least every 2 weeks while on Incivek). They should be drawing metabolic or chem. panels and checking your thyroid periodically too. However, even if the doc informs you of your test results, get paper copies of all of them. You should also have a copy of your biopsy report if you had one and your ultrasound report if you had that. Also get a copy of the Genotype report. Having the actual copies and being able to compare them makes you a much better informed person concerning your own disease and how your body is doing while on treatment. Not all docs are good at treating Hep C patients and sometimes they ignore things they should not. If you have your lab reports then you can post them here is you have any questions and people can tell you if you are okay or if you need to get some help correcting abnormal labs. Plus, if you ever decide to switch doctors, you will have all of your lab work to show them.

You have alredy experienced a lack of concern by your doctor when he/she should have been concerned about that rash. In addition, they should be treating your side effects, at least the side effects that can be treated (mainly rash, nausea if you jave it, reactal and anal problems). Many of the side effects we just have to put up with, but these side effects should be treatede. Also, have you asked him what he plans to do if your hemoglobin or white count drop to a dangerous count? You don't want to be caught with a low hemoglobin and with the doc having no plan or clue what to do. I started asking my case manager right away about rescue drugs if my hemoglobin dropped or my white count dropped (actually, it is the absolute neutropjils that they are concerned about). Also, they need to be watching your platelets (which should be included in the CBC).

If you are getting depressed I think it is a good idea to talk with the doc about it. But if he is as little concerned about depression as he is about rashes, you may need to just see a pyschiatrist on your own. Interferon can cause severe depression as well as mood problems so don't ignore depression if you have it.

If you have any more question or need lab interpreted, just post and people will respond.
Avatar universal
I'm in week 7 of my treatment right now and experiencing the rash close to the moderate level.  I'm taking benedryl at night and some other itch medication during the day.  Don't think either of them are working that well.  Have tried all kinds of lotions and potions prescribed by doctor and lots of over the counter stuff.  What seems to work best is cold water.  Gold Bond green bottle with red cap is the next best thing.
If anyone out there has any remedies please share, I can barely stand this.  Almost to the point of having to stop work till I'm done with the Incivek.
Avatar universal
Fluocinonide cream (also comes in ointment) worked wonders. Twice dailey for 10 days and my rash was gone. It was a small rash on each elbow, but was spreading fast 4 days into tx. It itched so bad that it burned, stung and hurt like nothing I have ever experienced before. The second I put this cream on I felt better. It is okay to take with incivek as well. If your liver doctor won't address your sides go to your primary doc and get this cream!! (Or ointment..whichever you prefer) I liked the cream because it would dry and not get on everything. I feel like it helped my rash breathe and heal quicker once it dried as well. I am so sorry you are going through this...you are not alone and have our support!! I have a pretty crappy medical team as well...but being involved and having the support and help from all these people on the forum has saved me a few times. My friends on here are more on top of my tx than my Doctor! I hope you can get some relief from this rash. Do not let them ignore you. call a thousand different doctors if you have to. Don't let them ruin your chance of SVR!
Well wishes,
Laura
Avatar universal
I was glad that you posted as well.  I am finding that just to be able to cry out to others that know what the hell I am going through has given me the strength to not quit treatment.  As of yesterday when I posted my long rant of concerns I was goinf to for sure not take another dose of incivek or the fat.  With everyones response I realize that I am not crazy, I have reason to be concerned, and my medical team cares more about getting paid than actual one on one exams and treatment.  Since yesterday I have tried to the cold rags and they do give you enough relief to take short naps. I don't know about you but sleep was/is almost impossible.  I am going to buy the Dr. Bonners Peppermint products that were also recommended yesterday.  I will let you know what else is working for me.  
Avatar universal
Good Morning Pooh and others in the get well fight.  I have decided to go to my primary care doctor about my concerns.  They have years of medical records on me and would know if things looked out of whack.  I can tell you they will take care of me if anything needs to be investigated further.  I am calling the liver specialist (read answering machine or receptioinst) today to attempt to get copies of my lab results.  I am on week 8 and I have only had one set of labs ordered by the liver specialist.  However, I do have 2 CBC's that were odne by the ER department on those two trips.  I called the pharmacy and still no call in refill from last monday on the cream.  I just bought Cortizone 10 Ointment.  For some reason the ointment soothed the burning and hurting more than the regular cream.  I could kick myself for not getting online sooner with everyone.  I have a renewed energy to right the wrongs I feel have been done by lack of knowledge in the healthcare provider circles concerning keeping patients comfortable enough to endure this treatment.  Not to mention ignoring life threatening signs.  I wanted to mention I have had the anal issues from day one.  I use Boudreaux's butt Paste.  It workd well and if anything the name will give you a smile.  Take care everyone.  I have doctors and automated machines to tackle today.  I actaully have the energy to make phone calls today.  And that is saying something.
Avatar universal
I just wanted to write a quick post.  i spoke to the nurse at liver specilaist inquiring about my viral loads from beginning to current.  She said the numbers were very technical and i wouldn't understand.  That only a doctor or lab would need those numbers.  I ask for copies of all my medical records.  The last thing she said was that on the one and only lab I have had done for there office on march 9th, that it shows the virus is undectectable.  She said she would send a message to the doctor to see if my riba could be cut in half at this point.  She claimed that she remembered me when I came in with the rash and that the whole office agreed they had not seen a rash that bad.  That pissed me off because I was still suffering and no one was stepping in to help me or at the very least try different rememdies.  I have a doctors appoinment with my regular primary care provider on Friday.  I will feel safer being treated by her than the liver specialist gang.
1972385 tn?1343830676
No not wet clothes,they will freeze.
Avatar universal
I have been putting them on different areas even though they are frozen
1815939 tn?1377995399
The over the counter meds (Benadryl, hydrocortizone cream) did absolutely nothing for my rash. The rash just kept getting worse and the itching finally made me get on the phone to the case manager. This was another one of those deals where I was not really sure what was supposed to done. After all, this is my first experience with these drugs and treatment. The case manager says they have had over a hundred cases. I figured they would know when to treat side effects and how to treat them appropriately. Well I was mistaken, lol.  I had even been in to see her weekly and she watched the rash blossom at week 10 into a pile of hives covering 2/3 of each forearm, my legs, abdomen, and thighs. Nada. Never did a thing. Anyway, so I called her when I could no longer stand the itching. I saw my primary and he ordered fluocinonide ointment. He also ordered Benadryl (which did nothing) and Zyrtec (which I have also decided did nothing). I finally saw a Dermatologist who kept me on the fluocinonide ointment and added Hydroxyzine. I also got clobetesol for the rash on my scalp. Since then I have increased the Hydroxyzine dose and frequency and the rash is actually finally getting better. But this is 3 months of rash, itching, lack of sleep, feeling lousy. I told the case manager that I should have been on that ointment and the Hydroxyzine at week 10 when I had that bad rash erupting. Guess what she said. "I thought it was the Incivek and thought it would go away after finishing the Incivek. I have never seen a Riba rash.) Just because she thought it would go away does not mean it should not be treated until it does goes away, lol. I was annoyed and she knew it.

So I guess my suggestions would be fluocinonide ointment, Hydroxyzine as needed and at bedtime (both prescriptions), a cold house, few covers at night and they should be light weight. Stick your feet out of the covers at night, it helps.

Also very lightweight soft cotton clothing helps and little of it. My main attire for the past 3 months has been a short, soft, light weight, cotton, summer nightgown. No shoes or just sandals with no back. No socks (I had a horrible rash on my ankles and feet and the sox were bad news. Regular clothing rubs and makes the rash itch and get worse.

My derm doc did a biopsy of one of the rash hives and she said it appears to be an allergic type reaction to the drugs (Riba).

The interesting thing is, with me, every problem they have not addressed has snowballed and has ended up costing several times what it would have cost had they addressed it right away.

Hope something works for you.

Avatar universal
Definitely let me know where you find them and how they work.  My doctor had me try just aloe lotion which works ok but only for about 20mins it seems.  She also had me try NEOSPORIN® ECZEMA ESSENTIALS.  Same thing, it only works for about 20 mins.  I still find that cold water run over my arms for a few mins works the best.  Gold Bond, green bottle is what gets me thru the nights, I think I must apply it to my arms 3-4 times.  Sleep is really getting to be a problem as I only sleep for an hour at a time.
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