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hep c triple therapy week 9 HELP!
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hep c triple therapy week 9 HELP!

At week 9 of triple therapy for Hep C Genotype 1, can anyone tell me if these three symptoms, now over 5 days, are all right at once, and anything to do to help? This treatment is new is Spain, and there is not a lot of information, which is getting really scary and overwhelming.
The symptoms are: (1) fever of 102 or higher but stays down with fever reducer (2) fatigue is very high (3) itching and rash are on most of body, and there is a burning rash on legs and upper back.
Thank you for any information you can offer. N in spain
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1840891_tn?1383280315
Hi, and welcome to the forum! It's really hard for us to say whether your symptoms are truly dangerous or not, but there is a clear possibility that they might be. Get in to see a dermatologist on an emergency basis and be sure to take along your list of meds and to clearly state your concerns about Stevens-Johnson Syndrome. A decent dermatologist will be able to help you with that end of it. Additionally, you should call your treating physician, even though he/she is out of the office. Most doctors have answering services to take urgent off-hours phone calls, and usually the service can contact the doctor and then the doctor will call you back. Don't be afraid to be a bother, this is exactly the kind of problem those services exist for. Many doctors also have arrangements with other doctors to take on each others emergencies on alternating weekends. If by chance none of this works and you really can't contact your doctor immediately, then as soon as you can contact them you should explain this crisis you had and ask him/her exactly how you should deal with urgent situations in the future. It is not acceptable for a physician to be treating people with these dangerous drugs and not be making provisions for any serious reactions, which very rarely occur during normal office hours. If your doctor has no provisions you should ask him/her to create some to have in place in the event of another crisis. If they are unwilling then perhaps you should consider finding a different doctor or enlisting the help of your primary care physician. Treatment is a worth some risks, but its just plain stupid if the treating doctors are not doing what they can to minimize the risks to their patients.
18 Comments Post a Comment
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766573_tn?1365170066
Itching and rash nay not be a good sign but it really depends which meds you are taking for triple. Are you taking Incivek or Victrelis?

Either way tell your doctor about your rash,. You might need to take an oral antihistamine as well as apply a topical steroid cream. It might be something you cannot let get out of hand so be sure to post again with more details. I don't want to freak you out or mislead you by saying things that may not apply to you.
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4950316_tn?1394188185
hello. welcome to the forum.
Rashes are a common side effect of HCV treatment. The drug Incivek is notorious, and also the Ribavirin is responsible for bad rashes.
It is extremely important that you get treatment for your rashes immediately. They can spiral out of control very quickly.
You will need a strong cortisone ointment. Don't waste time or money with over the counter meds, get a prescription for 'big guns'. An ointment that has active ingredient at at least .1mg. An antihistamine to help calm the itch is also imperative.
Stop using any soaps etc. Bathe your skin with cool water, pat dry and try to wear only loose cottons etc. The sun and being hot also aggravates these rashes.
Don't wait another day to seek help.
Fever could be associated with rashes and until you deal with one problem, you can't deal with the next.
Tiredness, exhaustion, apathy, fatigue are all common side effects of treatment. If you are REALLY feeling ******, you need to have blood tests to check your hemaglobin levels, which in some people can fall to levels that need treating immediately.
Just get your medical team to do blood tests, and give you prescriptions for strong ointments etc.
Keep in touch, and good luck.
There are people here nearly 24 hours a day that can answer questions. We have all treated, and are treating, so can share the information we ourselves have gathered that our doctors couldn't help us with.



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Avatar_f_tn
hi and welcome to the forum agree with above please go to doc today for the rash its important that it is under control with tabs and a steriod cream ie Hydrocortisone. Fatigue is very common mostly through anemia caused mostly by the riba.I understand that you scared its natural like you its new tx in England with not much info, but stick with this site and you will get all the info and support that you need. Please take care and keep us posted and we will help as much as we can Jules
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Avatar_f_tn
Thank you very much for these responses. It is Incivek, and I know rashes are common but also can be dangerous; Today there is a new nose sore, and I am concerned about Stephen Johnson Syndrome versus just reaction to the medication. The only doctor in Spain doing this treatment is 2.5 hous away and not back in the hospital for 2 more days; I cannot tell if the situation is dangerous or not.
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Avatar_f_tn
Welcome ninspain. So sorry you are having this proplem. I also treated with Incivek, and had a severe rash. I was also concerned about Stephen Johnson Syndrome and ended up in ER just to be given Benadryl. It is very frighting to see you skin and that rash. Go to Floridian 7 where she posts pictures of her rash. Mine was about the same. Not saying not to go to Dr, but not to panic like I did. Do go and get medicaion as as Idyllic said. A dermotologist can tell you if it is Stephens. My rash also was the worst at 9 weeks and I had to stop Incivek and was still UND at 12 weeks. Keep checking back here as these people have all survived this tx and are familliar with symptons. Do not hesitate to also call Dr. All your other symptoms also sound very familliar. The virus is testing you. Don't let it win. Kick that monster out. All my best and keep coming back.
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1840891_tn?1383280315
Hi, and welcome to the forum! It's really hard for us to say whether your symptoms are truly dangerous or not, but there is a clear possibility that they might be. Get in to see a dermatologist on an emergency basis and be sure to take along your list of meds and to clearly state your concerns about Stevens-Johnson Syndrome. A decent dermatologist will be able to help you with that end of it. Additionally, you should call your treating physician, even though he/she is out of the office. Most doctors have answering services to take urgent off-hours phone calls, and usually the service can contact the doctor and then the doctor will call you back. Don't be afraid to be a bother, this is exactly the kind of problem those services exist for. Many doctors also have arrangements with other doctors to take on each others emergencies on alternating weekends. If by chance none of this works and you really can't contact your doctor immediately, then as soon as you can contact them you should explain this crisis you had and ask him/her exactly how you should deal with urgent situations in the future. It is not acceptable for a physician to be treating people with these dangerous drugs and not be making provisions for any serious reactions, which very rarely occur during normal office hours. If your doctor has no provisions you should ask him/her to create some to have in place in the event of another crisis. If they are unwilling then perhaps you should consider finding a different doctor or enlisting the help of your primary care physician. Treatment is a worth some risks, but its just plain stupid if the treating doctors are not doing what they can to minimize the risks to their patients.
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Avatar_f_tn
Hello,
Thank you so much for your help. The latest update is a visit to the doctor, as you all advised, which was good. It resulted in a blood transfusion for the anemia. At home again, I am concerned about blood sugar dropping/ trying to get up without fainting. Is fainting/near fainting at all common?
Thank you,
N
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317787_tn?1373214989
Hello...so glad you were able to get to a doctor.  Thank you so much for the update.   I have heard of people fainting and was close myself once or twice.
I thought it was my low hemoglobin.  My hemo got so low I started to get number in feet and ankles so could only stand for about 5 minutes at time.
Best of luck to you.
Dee
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317787_tn?1373214989
just wanted to come back and say you r doing really well almost done with incivek
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Avatar_f_tn
The fainting or near fainting is probably more due to the anemia than blood sugar.  You have to rest when you're tired, have a friend walk with you so that you don't fall, and best not to drive when you're very anemic.
The rash is a difficult side effect of Incivek.  You could try posting a picture of the rash on your photos and post and let us know it's there.  Then perhaps we could answer your question a bit better.  Generally speaking a mild to moderate rash is OK, but a severe rash should be monitored by your doctor who is prescribing Incivek.  You can google Incivek rash and there is a chart that the company has put out with photos of what is mild, moderate, and severe.  My husband had a moderate rash, but it seemed severe at the time.  He was red, welty, and had a few blisters.  It itched and stung and burned.  It would cover one part of his body, and then move and cover another part of his body.  He took prescription Hydroxyzine and used a prescription Triamcinilone ointment.  He used a cool shower, patted dry, put Eucerin cream.  In the shower, he used Eucerin wash.  Sometimes he would stand in front of an open freezer door, or go outside in the night air.  We were afraid that if his doctor saw the rash, she would take him off Incivek, but it just kept moving around, so he was never really 100% covered.  It got better and disappeared after he finished Incivek at week 12.  
Advocate1955
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3159077_tn?1356034731
I agree that anemia due to low hemoglobin is probably causing the fainting. I almost blacked out a few times when I stood up to walk when my anemia was bad. I also had a pretty bad rash and you can click on my name to go to my profile under photos to see it. I think there were many others like Floridian, and I can't remember the rest who had a bad rash too. Maybe others will remember. I was prescribed Traimcinolone and Atarax for my rash and it did get better. I was also concerned about Steven Johnson Syndrome and so was my doctor. Hope it gets better for you.
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1840891_tn?1383280315
I never actually fainted, but I did feel about to faint numerous times, even though my hemoglobin wasn't really all that low (mid-10's). It was during the Incivek phase that I had this problem and it improved a lot within a week of finishing the Incivek, even though my hemoglobin stayed in the mid-10's throughout my tx. Maybe it could have been blood sugar, I don't know, but it did feel kind of dangerous. I didn't dare to drive during that period, and my husband took me to all medical appointments. A few times I felt unsteady enough to ask him to walk with me to catch me if I went down, and I held on to his arm. Just try to be really careful until this phase passes - you don't need to add physical injuries to your list of challenges right now. It will pass before long now, as you are almost finished with this worst phase of tx!

Many people seem to experience a delightful little window of feeling great starting about a week after finishing the Incivek, so be prepared to take full advantage of that if you do get it. For the first 4-5 days after Incivek I actually felt a little worse, but then about day 7 I suddenly felt much better, and then had about two weeks of actually feeling great. Eventually it wore off and the sx from the remaining drugs began to bear down on me. I wished I had known in advance though, as I would have planned some fun activities for that delightful little break from feeling awful. I hope you can take better advantage than I did!
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Hello and thank you so much to all who have answered our questions.  There has been a pause in our communication because we ended up going to the emergency room on June 18th-- we were misdiagnosed for an infection in my husband's kidney, we asked permission to leave the hospital and we traveled at 2am to another hospital 2 hours away, where we entered another emergency room and were bettered attended.  My husband didn't need antibiotics in that moment, and he was given a blood transfusion for the anemia.  We have had to stay in the city where the hospital and his specialist are (Sevilla), so we've stayed for over a month in his brother's house.  
He finished telaprevir on July 4th and definitely felt better after.  He'd been confined to the bed-- I had to help him to the bathroom in the same room and we always required a wheelchair to go to the doctors.  However, two days after finishing telaprevir, he came down the stairs alone and surprised me in the garden!  (By the way, my husband is 42 years old and has always been very active in windsurfing/kitesurfing sports, so he was in good shape)  However, I think the first week without telaprevir he may have had a bit of a psychological high, because since then he has felt a bit worse and yesterday we ended up in the emergency room again for inflammation, skin shedding on his entire body, and blue and reds tones under the skin.  I was very surprised to see this after having finishing the telaprevir.  The doctors there were alarmed at his condition and seemed to take it rather seriously, but in the end they gave him a corizone-steroide shot (from what I understood) and prescribed Deflazacort, which seems to be a corticoide-steroide.  They had been talking the whole time about leaving him overnight in the hospital and when they decided to let him go it happened so quickly that I realized once home that they hadn't put down the duration of the newly-prescribed med, so I have no idea how long to give it to him.  I'll get an appointment with his specialist next week to make sure that these side-effects are okay.
Anyway, that's all for now, thanks everyone for the comments-- one question, in case someone can give us an idea...  does the telaprevir take a few weeks to wear off?  Will he feel better around week 19, for example, or is his current state of fatigue what we should expect for the duration of the treatment?  Thanks everyone, and best of luck to all! N.
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1815939_tn?1377995399
I did triple med treatment with Incivek/Telaprevir, Interferon, Ribavirin.

I developed a rash around weeks 9-10. Mine did not go away with the cessation of Incivek. Mine was a Riba rash. I am telling you this only so that you know that some rashes are from the Ribavirin and do not necessarly get better or go away when one is off Incivek. I was on Hydroxyzine 50 mg every 6 hours for itching and rash (antihistamine), Fluocinonide ointment for body, Hydrocortizone Valerate for face, Clobetesol solution for scalp. All prescription medications.

You asked if  "the telaprevir take a few weeks to wear off?  Will he feel better around week 19, for example, or is his current state of fatigue what we should expect for the duration of the treatment? "

I did feel better after the Incivek. There is no doubt about that. I felt horrible on the Incivek, so anything would have been better, LOL. However, I did feel better right away after finishing Incivek and I did feel considerably better after being off the Incivek for a few days. The Incivek side effects like rectal problems went away almost immediately after finishing the Incivek. However, I still had side effects. They were just less profound and fewer than when I was on Incivek. Once the rash got under control, which took months, I was able to do more. I was still very fatigued, had no motivation or energy, was weak, had frequent episodes of light headedness, felt like I was going to faint often and with any extra exertion, and had multiple other side effects. However, I still felt better than when I was on Incivek. It is all relative. I just tried to take it easy, get up slowly, move slowly, not bend over and rise too quickly, etc. After about week 32, I did try to accomplish a few small projects by doing them slowly and in short stages, resting in between the stages.

I don't know how long your husband is treating. If it is for 24 weeks, he will be at 24 weeks faster than you think. The time will go faster, or appear to go faster. If it is for 48 weeks, it will still pass fairly quickly. Regardless of the side effects, he can make it and he will get there. Just keeping his eyes on the prize (Sustained Virologic Response) will get him through treatment.

Best of luck!

PS: Just so you know that the symptoms are many and varied and that your husband is dealing with common symptoms we all have, here is a link to a post I posted listing the side effects that I had.

http://www.medhelp.org/posts/Hepatitis-Social/The-Prize--SVR--plus-side-effect-note/show/1903447#post_8868273
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Thank you so much, Pooh55811,
My husband was treated for the last skin reaction with steroides and creams, got much better, and is now feeling awful again.  Your side-effect list helped alot, but his current worst pain is in one leg, which looks a bit redder/bluer than the other leg, and is more swollen.  We are 2+ hours away from any doctors who can treat him, so every time a tricky side effect comes up, we have no idea how seriously to take it.  I guess we'll go to Sevilla again.  It seems to me like either the same allegric reaction that he had to the Ribavirina, or something having to do with his circulation.  His leg hurts too much to use-- even with crutches to go to the bathroom he groans in pain...  He's currently taking, (but lowering the dosis to remove this week, as indicated by his doctor): deflazacort (a cortizone steroide (I'm trying to translate from Spanish).  In a previous skin reaction he was prescibed Hydroxyzine Dihydrocloruro, but has not been taking it since and I'm not sure if I should start giving it to him again.  Were you taking Hydroxyzine throughout all of your Riba treatment?  My husband is on a year-long treatment since a previous treatment of only Interferón failed...  I also have a previously-prescribed cortizone cream for the skin, but it isn't really itching right now-- it's red and sensitive...
Thank you and congratulations to you! N. in Spain.
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5720485_tn?1373566655

I am copying a link to you, it is of a wrestler who, contracted hepatitis and it details his struggles while on treatment, for the second time.  He also has some youtube videos.   Anyway I thought that maybe it could help you with what you may expect.  He also has some pics of his rashes. . . This man had a lot of side effects. . . I found it helpful when I wanted to learn everything I could about treatment and I hope you do too.  
Shyrl

http://blogs.hepmag.com/devonnicholson/

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1815939_tn?1377995399
"his current worst pain is in one leg, which looks a bit redder/bluer than the other leg, and is more swollen. His leg hurts too much to use-- even with crutches to go to the bathroom he groans in pain"
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Please go to an emergency room now. Do not wait until tomorrow. This may be a serious complication. No one can know for sure what is going on with his leg except a doctor who examines him. However, two things that come to mind as possibilities are cellulitis or a blood clot. I am not saying it is either one of them, but a swollen, red/bluish leg which is too painful to walk on could be a very serious problem and would alarm me if it was me.

A cellulitis is an infection and can be serious. A blood clot can be very serious, even life threatening. While these are only possibilities (as no one on the forum can truly diagnose your husband), they are serious possibilities and he really needs to be evaluated by a competent physician. Please seek help today.

Wishing you the best.


"Were you taking Hydroxyzine throughout all of your Riba treatment? "
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I did take the Hydroxyzine for the last several 8 months of treatment because it is the only thing that kept the rash and itching under control.
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Avatar_f_tn
Thank you.  I've organised places for my 3 small children to stay and we'll leave first thing in the morning.  Thank you and I'll post news. N. in Spain.
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