Aa
If you don't treat the rash by quitting tx, what will happen
Has anyone been hospitalized on here or had severe complications from a rash from this triple therapy/ Incivek?
I can't find any info out on this in the guidelines. Just wondered what the worst case sinareo would be or the best case?
Thanks again and again!
I can't find any info out on this in the guidelines. Just wondered what the worst case sinareo would be or the best case?
Thanks again and again!
Welcome to the forum.
I am sorry your husband is having these problems and it is unfortunate, to say the least, that his doctors do not seem to have a clue about rashes.
It appears that your husband is on Incivek (since his doctors said the rash did not look like an Incivek rash). First of all, it may be from the Incivek but it could also be from Ribavirin. Second, the rashes from these meds take on all sorts of forms and shapes and characteristics. Whether the rash looks like their idea of what an Incivek rash should look like or not, they still need to treat it. It is a rash and it is a problem. In addition, these rashes from these meds, whether from Incivek or from Ribavirin, tend to spiral out of control rapidly. He needs treatment for that rash NOW. If the nurse set up a Dermatology appt, that appt. should be today, or tomorrow at the latest. This appt. should be on an urgent/emergent basis. The rash from these meds is nothing to fool around with. The rash can (and has, in some people) jeopardized treatment. Some people have had to stop due to severe rash. Others have had to stop because their doctors did not take the rash seriously and the rash spiraled out of control. In addition, the rash is very painful and the itching will drive a person nuts. So the rash needs to be addressed immediately. If the Derm appt. is next week, call back and tell them that he needs to be seen today or tomorrow at the latest.
I had bad rash that my treating team also had no clue what to do. Over the counter medications are totally useless for these rashes when they are more than just a few bumps here and there. After much insistence and a lot of needless suffering and misery, I finally got on some meds that worked for it. Here is what I was prescribed, all prescription meds.
1) Hydroxyzone 50 mg every 6 hours as needed (the rash never got under control until I was using this medication every 6 hours)
2) Fluocinonide ointment for the body
3) Clobetesol solution for the scalp
4) Hydrocortizone Valerate for the face
I cannot stress enough that this rash needs to be treated aggressively and brought under control immediately. His treatment is at stake.
Just to let you know that the rash can take on many forms, I had the following: Rash ….. red skin, hives, wheals, confluent hives, macules, papules, pinpoint lesions, flat red-purple lesions, bright red lesions, dry scaling lesions, skin cracks/fissures (palms, fingers, knuckles), eczematous lesions, psoriasis type lesions; Itching continuous/widespread; Mouth and Nose Sores; also some weeping of the rash areas
Mine never got pus. That would concern me even more. Is it pus or is it clear fluid? I can see that either could occur because the the rash, itself, can have vesicles. Plus, any rash, especially if scratched, can become infected.
Here are a couple of links to some rash photos that some members posted. Click on the photo sections and look at all of the photos:
http://www.medhelp.org/personal_pages/user/4226456
http://www.medhelp.org/personal_pages/user/1995824
http://www.medhelp.org/personal_pages/user/182045
And here is a link to Incivek management. Scroll down (a little more than half way down) and you will see photos of their rash stages, although I think they tend to be VERY conservative in their treatment of it. They do not recommend treating it as aggressively as I feel it should be treated. That may be because they are trying to downplay it a little for fear of scaring people off.
http://www.incivekhcp.com/sites/incivek.com.hcp/files/documents/Treatment_Management_Guide.pdf
Things that can help (in addition to the prescription meds):
wear loose lightweight cotton clothing, nothing heavy or thick seamed
wear as few clothes as possible (shorts instead of long pants, etc.)
keep the house cool (mine was at 66-68)
use very soft all cotton sheets on the bed
use a fan at night to keep cool (as well as air conditioning)
do not wear anything that picks (neck tags, lace, picky fabric)
avoid sox when possible (they will make the feet hot and they will pick)
cool showers
use hypoallergenic products (soaps, laundry soap, deodorant, etc.)
avoid the sun
avoid heat
There probably more that I forgot.
By the way, where is your husband in terms of treatment. Which week.
Best of luck.
I am sorry your husband is having these problems and it is unfortunate, to say the least, that his doctors do not seem to have a clue about rashes.
It appears that your husband is on Incivek (since his doctors said the rash did not look like an Incivek rash). First of all, it may be from the Incivek but it could also be from Ribavirin. Second, the rashes from these meds take on all sorts of forms and shapes and characteristics. Whether the rash looks like their idea of what an Incivek rash should look like or not, they still need to treat it. It is a rash and it is a problem. In addition, these rashes from these meds, whether from Incivek or from Ribavirin, tend to spiral out of control rapidly. He needs treatment for that rash NOW. If the nurse set up a Dermatology appt, that appt. should be today, or tomorrow at the latest. This appt. should be on an urgent/emergent basis. The rash from these meds is nothing to fool around with. The rash can (and has, in some people) jeopardized treatment. Some people have had to stop due to severe rash. Others have had to stop because their doctors did not take the rash seriously and the rash spiraled out of control. In addition, the rash is very painful and the itching will drive a person nuts. So the rash needs to be addressed immediately. If the Derm appt. is next week, call back and tell them that he needs to be seen today or tomorrow at the latest.
I had bad rash that my treating team also had no clue what to do. Over the counter medications are totally useless for these rashes when they are more than just a few bumps here and there. After much insistence and a lot of needless suffering and misery, I finally got on some meds that worked for it. Here is what I was prescribed, all prescription meds.
1) Hydroxyzone 50 mg every 6 hours as needed (the rash never got under control until I was using this medication every 6 hours)
2) Fluocinonide ointment for the body
3) Clobetesol solution for the scalp
4) Hydrocortizone Valerate for the face
I cannot stress enough that this rash needs to be treated aggressively and brought under control immediately. His treatment is at stake.
Just to let you know that the rash can take on many forms, I had the following: Rash ….. red skin, hives, wheals, confluent hives, macules, papules, pinpoint lesions, flat red-purple lesions, bright red lesions, dry scaling lesions, skin cracks/fissures (palms, fingers, knuckles), eczematous lesions, psoriasis type lesions; Itching continuous/widespread; Mouth and Nose Sores; also some weeping of the rash areas
Mine never got pus. That would concern me even more. Is it pus or is it clear fluid? I can see that either could occur because the the rash, itself, can have vesicles. Plus, any rash, especially if scratched, can become infected.
Here are a couple of links to some rash photos that some members posted. Click on the photo sections and look at all of the photos:
http://www.medhelp.org/personal_pages/user/4226456
http://www.medhelp.org/personal_pages/user/1995824
http://www.medhelp.org/personal_pages/user/182045
And here is a link to Incivek management. Scroll down (a little more than half way down) and you will see photos of their rash stages, although I think they tend to be VERY conservative in their treatment of it. They do not recommend treating it as aggressively as I feel it should be treated. That may be because they are trying to downplay it a little for fear of scaring people off.
http://www.incivekhcp.com/sites/incivek.com.hcp/files/documents/Treatment_Management_Guide.pdf
Things that can help (in addition to the prescription meds):
wear loose lightweight cotton clothing, nothing heavy or thick seamed
wear as few clothes as possible (shorts instead of long pants, etc.)
keep the house cool (mine was at 66-68)
use very soft all cotton sheets on the bed
use a fan at night to keep cool (as well as air conditioning)
do not wear anything that picks (neck tags, lace, picky fabric)
avoid sox when possible (they will make the feet hot and they will pick)
cool showers
use hypoallergenic products (soaps, laundry soap, deodorant, etc.)
avoid the sun
avoid heat
There probably more that I forgot.
By the way, where is your husband in terms of treatment. Which week.
Best of luck.
Hi this post is old however wanted to add to what asle said, you have to get the rash under control as soon as possible.
I can not believe the doctors! What are they trial doctors or something? Just waiting till he had to be admitted?
Again Asle gave great advice.
This OP could only treat for 12 weeks and is not SVR so it did work
There are pictures of what is mild, intermediate and severe. I will try to find
I can not believe the doctors! What are they trial doctors or something? Just waiting till he had to be admitted?
Again Asle gave great advice.
This OP could only treat for 12 weeks and is not SVR so it did work
There are pictures of what is mild, intermediate and severe. I will try to find
In the US the rash treatment you want to get ASAP is either a strong steroid cream, or Fluocinonide, and the antihistamine to calm the itch is Hydroxyzine 50mg.
There are too many doctors being part of these treatments that do not have ANY IDEA about so much of the SX. If no one will listen, go to Emergency at your closest hospital, and demand these levels of creams.
There are too many doctors being part of these treatments that do not have ANY IDEA about so much of the SX. If no one will listen, go to Emergency at your closest hospital, and demand these levels of creams.
I meant that the fact the 3 stooges plus your husbands doctor didn't prescribe anything, is plain stupid, niave and potentially dangerous. Insist on getting some treatment now before Dermatologist. 24 hours can spiral out of control.
I don't mean to sound alarmist, but I had terrrible rashes, and got great advice from here, and got them under control so far in my 16 weeks of treating.
I don't mean to sound alarmist, but I had terrrible rashes, and got great advice from here, and got them under control so far in my 16 weeks of treating.
Hello and welcome to the forum.
Firstly, this post is a couple of years old. People may find it and assist, but if answers are slow, post your question in the brown box at the top right of the page. My answer will bump you to the top.
Firstly, it would help to know what treatment your husband is on. There are slightly different rashes for Incivek, Ribavirin and Bocepravir.
So saying, these rashes should be treated immediately. I don't know what 4 doctors in the same office have suggested, but he needs to get onto strong ointments NOW. Not over the counter meds. For itch he needs to be prescribed antihistamines to calm the itch. Overthe counter products are not strong enough. These rashes are one of the most common reasons people have to stop treatment. And they are serious if not treated aggressively and immediately.
When you say his doctor, do you mean his GP? What is the Heptologist or gastroentologist that's monitering his treatment have to say?
Stop using anything on his skin but cool showers to calm itch, a soapfree wash (Aveena is v.g, and moisturize again with soap free products. Try to stay out of the sun, as heat and sun tenbd to aggravate these rashes.
And get a prescription immediately for a cortisone ointment of .1 % Nothing less. I hope someone jumps in with product names available in the US as I'm in Australia, but any of the 3 Stooges in your doctor's office that has seeen the rash and prescribed anything, are derelict in their duty of care or just plain ignorant.
Please continue to ask questions. There are some very knowledgable people here. My brain is a bit shot from treatment,and I can't remember the US product names, but someone will list.
Good luck and let us know how you and your husband go.
Firstly, this post is a couple of years old. People may find it and assist, but if answers are slow, post your question in the brown box at the top right of the page. My answer will bump you to the top.
Firstly, it would help to know what treatment your husband is on. There are slightly different rashes for Incivek, Ribavirin and Bocepravir.
So saying, these rashes should be treated immediately. I don't know what 4 doctors in the same office have suggested, but he needs to get onto strong ointments NOW. Not over the counter meds. For itch he needs to be prescribed antihistamines to calm the itch. Overthe counter products are not strong enough. These rashes are one of the most common reasons people have to stop treatment. And they are serious if not treated aggressively and immediately.
When you say his doctor, do you mean his GP? What is the Heptologist or gastroentologist that's monitering his treatment have to say?
Stop using anything on his skin but cool showers to calm itch, a soapfree wash (Aveena is v.g, and moisturize again with soap free products. Try to stay out of the sun, as heat and sun tenbd to aggravate these rashes.
And get a prescription immediately for a cortisone ointment of .1 % Nothing less. I hope someone jumps in with product names available in the US as I'm in Australia, but any of the 3 Stooges in your doctor's office that has seeen the rash and prescribed anything, are derelict in their duty of care or just plain ignorant.
Please continue to ask questions. There are some very knowledgable people here. My brain is a bit shot from treatment,and I can't remember the US product names, but someone will list.
Good luck and let us know how you and your husband go.
My husband is taking treatments and his rash is horrible. Three doctors looked at him last week, and said his rash does not look like a typical Incevik rash. I have looked at pics of the rash, and his begins like that but quickly becomes worse with infection-like pustules. His doctor has seen his rash from the start and not done anything about it. These other three work in the same office, and saw him when he went in for blood work. His rash worries me because it itches constantly, causes him to have sleepless nights, and hurts. The nurse is making him an appointment with a dermatologist, and I hope a solution is found.
I know that there is something called Steven Johnson Syndrome which I believe 1% of people can get from the incivek and they do have to hospitalized. In the dose instruction it states that doctors should be on the look out for this. I would look up the symptoms. I think it has to do with mucus membranes drying up and/or burning from the inside out
I found a small amt of information on burning mouth syndrome
I hope that you have found something by now or at least gone to Hospital so that they could make you comfortable. HepCExperiment is having similar symptoms, it sounds just awful
Dee
I found a small amt of information on burning mouth syndrome
I hope that you have found something by now or at least gone to Hospital so that they could make you comfortable. HepCExperiment is having similar symptoms, it sounds just awful
Dee
I know that people have been hospitalized, I just wondered what the protocol for them was once they were admitted? I was hoping someone on the forum had been through this and could share their experience with me and what was the SOC there? I am always trying to be prepared, I like having plan a, b & c...it comforts me. I know no one on here is ready for any unnecessary hospital bills.
I thank you again for the wonderful advice.
Carolyn
I thank you again for the wonderful advice.
Carolyn
The answer is yes, there are people who have been hospitalized. I know of one, whom I personally know. It was very serious, required hospitalization and took some time to recover from and to some extent they are still recovering.
Mremeet (Prove 1trial, 2006) also had to go to the ER w/ his rash and he reported people saw him and hit the deck; either running to help him or running from him like he had *ebola-leprosy*.
Vertex says that less that 1% experienced stevens johnson grade rash and if possibly 2500+ people were treated w/ telaprevir I think you might be able to infer that possibly 10-20 people *during trials* may have had this even to this extreme, AND while being looked after at the trial clinics w/ free medical care and from doctors experienced with the drugs.
Vertex touches on steroidal use, just saying it is unproven. I believe is a double edged sword, since while it may improve the response to the rash, it does this through diminishing immune response.
willy
Mremeet (Prove 1trial, 2006) also had to go to the ER w/ his rash and he reported people saw him and hit the deck; either running to help him or running from him like he had *ebola-leprosy*.
Vertex says that less that 1% experienced stevens johnson grade rash and if possibly 2500+ people were treated w/ telaprevir I think you might be able to infer that possibly 10-20 people *during trials* may have had this even to this extreme, AND while being looked after at the trial clinics w/ free medical care and from doctors experienced with the drugs.
Vertex touches on steroidal use, just saying it is unproven. I believe is a double edged sword, since while it may improve the response to the rash, it does this through diminishing immune response.
willy
That's great that's all your rash has spread. I will be sending healing thoughts out to you! You are all blessing!
Carolyn
Carolyn
I had quite a lot of rash on my shins at about week 10 of TX with Riba & interferon. I was prescribed a steroidal ointment an this helped only slightly in controlling it. Good news was it got a little better rather than a lot worse. My TX was 26 weeks and I made it through without having to adjust any dosages. Good luck.
Let me know what your doctor says, I would like to compare notes,
thanks dear,
Carolyn
thanks dear,
Carolyn
Hey everyone,
I was told and I read in my medication guide that steroids were not good mixes with tx also. I am on a steroid cream for the last 14 hours, and the rash has only gotten worse, but itching has been relieved somewhat. I have another post going asking questions also regarding this situation. I will wait till this first drug is out of my body before I seek more drugs. Hugs,
Carolyn
I was told and I read in my medication guide that steroids were not good mixes with tx also. I am on a steroid cream for the last 14 hours, and the rash has only gotten worse, but itching has been relieved somewhat. I have another post going asking questions also regarding this situation. I will wait till this first drug is out of my body before I seek more drugs. Hugs,
Carolyn
nygirl7 is correct -if you find a dermatologist that is knowledgeable about the effects of these drugs, you can be treated. I did not take Incivek but was in a trial with possibly two DAA's. I had a horrible rash which threatened to cause end of participation. My wonderful doctor referred me to a derma who had already met with the drug companies about these rashes and he was expecting it. He gave me a few prescription creams and a shot of long-acting steroid - I forget the name of it but you can look over my old posts to find out. It had everything under control within 12 hours.
I'm going thru the same. It started at week 9 and tomorrow i start week 11. I saw my Doctor on Monday and i will be seeing him on Friday and he stated we might have to stop the Incivek. The rash is getting worse, it started on my forehead and now all over my neck, throat,upper body , arm and now my legs are breaking out, i'm so bad i dont want anyone to see me this way.
Karl62
Karl62
So sorry to hear about your situation .. the following is not from this forum , but another I frequent that has a nurse practitioner working as a member and works at a large clinic .. I know this isn't helping your situation .. other than to know you aren't alone having a severe reaction ...
" We are part of a major academic hospital and we have really seen the gamut with the telaprevir rash and honestly one patient in the icu is enough to give you pause. it's also sobering because these patients seem to have come in rapid succession, i think two were admitted at the same time. we are up to 5 admissions for telap rash"
" We are part of a major academic hospital and we have really seen the gamut with the telaprevir rash and honestly one patient in the icu is enough to give you pause. it's also sobering because these patients seem to have come in rapid succession, i think two were admitted at the same time. we are up to 5 admissions for telap rash"
I really think you should find out from your doctor what dermatologist knows about hcv and treatment.........perhaps they can consult with each other or something. It was the only thing that helped me.
As willbb posted sometimes you have to stop the incivik early, and 11 weeks is barely early. It's already done it's job at this point since you have been und since week 4. I think your doctor is being irresponsible to tell you that you need to tough it out.
You need some attention ASAP. Even if they are giving you attitude call your doctor and tell them what's happening before it gets even more serious.
-Dave
You need some attention ASAP. Even if they are giving you attitude call your doctor and tell them what's happening before it gets even more serious.
-Dave
I was starting my 11th week... in the last 5 minutes it's spread to the palms of my hands, everything except my face and insides of my ears is not covered in a rash. I'm hoping it will subside, took that shot last night too. Nobody can know which drug is doing it if not all f them! How crazy! I just have to let go of this stress. Everything's gonna be ok, I will repeat this mantra and breath deeply.
I have never heard of anyone ever being hospitalized for the rash - niether the Inc rash or the riba (interferon induced) rash or autoimmune eczema.
I developed the worst autoimmune eczema towards the end of treatment big oozy welts everywhere (mostly on my face unfortunately). The derm got it under control in one moment, I should have gone weeks before rather than trying to do it on my own. One cream and it was all cleared up and stopped itching immediately.
I developed the worst autoimmune eczema towards the end of treatment big oozy welts everywhere (mostly on my face unfortunately). The derm got it under control in one moment, I should have gone weeks before rather than trying to do it on my own. One cream and it was all cleared up and stopped itching immediately.
Okay, spoke with the doc, I am through with incivek. So...let's hope for the best now! Thanks for your help!
I was hoping to hear from someone that went through my situation. I have done a lot of research. My doctor told me...quote" if you can't tuff this out we are going to have to pull you off incivek." so...I am willing to endure if I have to, I just feel like such a failure. Doc gets in around 9:30 this morning, I WILL call him for sure.
My question was: Has anyone on this forum been hospitalized for this?
Just wanted to hear from a poster child ( -_- )
thanks for the feedback, I am having trouble navigating that med site you recommended because my iPad is having trouble scrolling on there.
I need to make it into the office...................upstairs.
My question was: Has anyone on this forum been hospitalized for this?
Just wanted to hear from a poster child ( -_- )
thanks for the feedback, I am having trouble navigating that med site you recommended because my iPad is having trouble scrolling on there.
I need to make it into the office...................upstairs.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
