I hope you are feeling better. Almost a week since stopping, so I hope you are feeling relief.
I am starting to feel better. Still lots of itching and the rash isn't as angry looking. I think it will take a little while before the rash completely disappears since there was so much of it. But like I said, it is getting better and that what is important.
DJ said
Dec 27, 2012
I hope you are feeling better. Almost a week since stopping, so I hope you are feeling relief.
Mary Jane said
Dec 26, 2012
Hey Julie, sorry to hear about the " rash' taking over your body.. I hope you get relief soon. I understand about wanting " normal" .. wishing you all the best ... MJ
JIme said
Dec 26, 2012
Hey Julie, take a well deserved break and then see what's next. Saty as healthy as you can so you'll be ready for the next go. Good luck.
Daook said
Dec 25, 2012
I really didn't get the rash too bad but that s--t knocked me on my arse. I'm glad those twelve weeks are over.
Now it's turning into an emotional roller coaster.
:)
hrsetrdr said
Dec 25, 2012
I knew that Incivek was bad news, was thankful to have been on Victrelis but felt horrible about how those who were using Incivek suffered.
Just yesterday I read the following on hepatitis-central.com:
"Vertex's Hepatitis C Drug Receives Another Blow With FDA Warning
Published December 19, 2012
Dow Jones Newswires
The Food and Drug Administration on Wednesday placed a new label on Vertex Pharmaceuticals Inc.'s (VRTX) hepatitis C drug Incivek, warning patients that the drug has caused fatal skin rashes in some patients.
Two patients died after developing severe skin rashes while taking Incivek, used to treat the viral liver disease, the FDA said. The warning label, known as a black box warning for its prominent placement and black border, is the most serious warning issued by the regulator, and is a further blow to Vertex's hepatitis C program.
Fatal skin rash? Good Lord, and I thought that peginterferon was pure-evil poison. I hope that the "oral only" regimens being tested will be taking a less toxic approach to cure.
wilsondog said
Dec 25, 2012
I had the exact same reaction on Insivek and was taken off 4 days before I was to finish the 12 weeks. I continued with treatment (Riba and Interfuron), but was also on Prednesone to kill the allergic reaction. If you look at my posts you'll see the nightmare that evolved from it all. I am almost 6 months post-treatment (SVR so far, so good!) But I'm still struggling with residual stuff, some of which was directly related to that damn rash! I too would have my flare-ups around 3:00 each afternoon once the major rash was under control, but I stayed on Benedryl and a nightime antihystimine long after I finished the Prednesone. This is serious business and doesn't leave the system quickly AND may cause other issues in the long run so don't ignore a rash that progresses or changes.
marktrux said
Dec 25, 2012
DJ wrote:
Sorry, I have a question. Is the rash issue something to do with Incivek only? Or if you are on the two medicine (peginterferon and ribavirin) do you also get rashes?
I am so sorry you went through such a bad time of it. Sounds like a nightmare!
-- Edited by DJ on Monday 24th of December 2012 08:41:04 PM
Both peg and ribaviran can cause rash. Peg is usually more localized around injection site and usually more of an iratation than rash. Ribarash can be more troublesome. I had to stop treatment last time due to the ribarash. This time I have it also, but i'm forcing myself to not quit. I'd hoped it would go away when i finished the incivek, I guess the incivek rash did clear up but i'm still left with the ribarash. I have several RX lotions, potions and creams but they don't clear it up, just make it more tolerable. Not everyone is affected by them though thankfully.
mallani said
Dec 25, 2012
Hi Julie, Just a thought. I have read reports of changing from Incivek to Victrelis due to the Inciv rash. It seems a shame to completely stop Rx when you have your Undet. and wait for new drugs. Having been on a PI, you will find it difficult to get on a trial. Perhaps it's worth discussing with your doctor. Cheers.
zuzusfam said
Dec 25, 2012
I am looking forward to letting my body heal and get back to what it knew as "normal." The doctor and I also talked about new drugs and injection free interferon. I will still be checking in at times. Thanks for understanding! Love you all!!
Bouba said
Dec 25, 2012
Yes, Deb
Incivek rash could be the one of the SX reasons to halt treatment...
You have to take preventive measures not to get to that - apply moisturizing lotions (I use Neutrogena) at least twice a day, cream liquid soap (like Dove),
drink a lot of water to wash out toxins.
Interferon can also cause kinda burning skin sensation and redness but its different from Incivek rash. Look up in a search box for pictures.
Biggyb said
Dec 24, 2012
Oh well Julie, new medicine is coming soon. Good luck.
DJ said
Dec 24, 2012
Sorry, I have a question. Is the rash issue something to do with Incivek only? Or if you are on the two medicine (peginterferon and ribavirin) do you also get rashes?
I am so sorry you went through such a bad time of it. Sounds like a nightmare!
-- Edited by DJ on Monday 24th of December 2012 08:41:04 PM
zuzusfam said
Dec 24, 2012
Went to see doctor today. Am being taken off treatment due to side effects. Told to take it easy and let my body heal; doc was surprised at how my rash looked and my week 3,4 and 8 peg injection sites; vl in 3 months (20% chance I still may be SVR. Who knows?) Woke up with NO TEMP today - first time in about 10 days. Yea me! If rash isn't gone by mid-January, I am to see a dermatologist.
-- Edited by zuzusfam on Monday 24th of December 2012 06:44:55 PM
zuzusfam said
Dec 23, 2012
Instead of putting my cream on each spot, it would be easier and less time consuming if I bathed in it. It is literally all over my body. It's not on the soles of my feet thank God! I am still drinking tons of water. The hydroxyzine pills they gave me seem to work very well. I take 2 at night for the sedative effect.
I am keeping track of my fevers also so when I see the doc, I can let him know that info as well. (Never over 100.4 but I know when I have one!)
Bouba said
Dec 22, 2012
Incivek is know to be quite toxic. Do not forget to drink a lot to wash out toxins. This may reduce rash risk as well.
Daook said
Dec 22, 2012
This is what I've been doing about the rash:
-Like Gatekeep, I also am using Hydroxyzine at 6pm and it works along with Zolpidem(Ambien) and Melatonin at 9pm to sleep. I now get my sleep. Very happy about that and can function during the day.
-I also use the Aveeno cream in the shower. Do not rough up rash areas, only rub it on and rinse it off.
-I also use Betamethasone DP prescription cream. I keep putting it on each spot and it keeps going away but re-pops up somewhere else. This cream works good for me. Rash seems to be in retreat.
I hope this helps you out.
Good luck!
gatekeep said
Dec 22, 2012
I was in the same boat. I was a day away from stoping per. MD. I thought I was going out of my mind. I also was on Hydroxzine it work but once it takes hold of the itch it feels burned. Night was the worst for me. I did Eucitrin calming bath, aveno cream and hydrocortisone on the hot spots right before sleep. Stay calm try not to itch( yeah right!) and tranquilizers are your friend.
Stevens syndrome is deadly!
Think of the big picture and hang in there!
God Bless...
zuzusfam said
Dec 22, 2012
[quote="karentaliesin"]ody) wasnt zuzusfam taken off the tele early , for this reason,
On Thursday afternoon, I ended up in the ER because of the rash. (I had stopped the incivek on Monday because of the rash) The med staff at the ER were very good but none had ever seen a rash like I have. They contacted my hep doc's office and I am off all meds until Monday when I go back to see the doctor. In the ER, I received an IV with benedryl and something else. (I think it was pepsid. I knew what it was before I started typing lol). The staff was also going to give me a steriod but when they spoke with my doctor's office, the office said no. The reason I ended up in the ER was that around 2 p.m. on Thursday, my arms started to itch, burn and hurt like crazy. I tried everything I have in the house to stop it but nothing helped. (One of the methods I used was slapping my forearms. I now have bruises.) I was screaming and crying because I was sooo miserable. About 3, I told my husband that I needed to go to the ER. Beore I was discharged, the ER doc said that I have to see a doctor EVERY DAY beccause the rash could turn into something that is really bad. He said the name of the syndrome but once again, I don't remember what it is.
On Friday, I followed up with my doctor's office and saw the RN. While I was there, I got an rx for hydroxyzine hcl 25mg tabs. I take 1 for itching, 2 for sedation every 4-6 hours. I start itching around the 4 hour mark, btw. I follow up with the doctor on Monday. It will be interesting to hear what the doctor has to say about this whole thing.
The doctors need to put more emphasis on the rash sx. When I started to get the rash, I thought "oh well, just a sx of the tele." I should have let my team know. Hindsight is 20/20 and I am a little mad at myself for not being more vocal about how bad the rash actually is. I wish the pharma people would have pictures of the rash with a caption "If your rash looks like this, go to the doctor." I had no way of knowing what is considered bad except when the doctor said "if it's on your face, you need to stop taking the tele." I have also heard and read that the rash and tele will be out of my system in about a week. I am not going to hold my breath on that one.
I can tell the tele is leaving though, because my head is a somewhat clearer and I don't "feel" like a walking zombie. I am glad to be off meds even if it's only for a few days. I am starting to wonder if I am not the best candidate for tx. This has been very tough going for me and my family. It has been hard to stay positive and I have cried more this past week than I have in the last 6 months. (Mostly on Thursday because of the itching. I was crying in the ER in front of the doctor who had a snow white beard, was a little portly and wore a red long sleeved t-shirt under his scrubs. I don't like crying in front of Santa.) But...today is a new day and we will see what it will bring. xxoo
I am starting to feel better. Still lots of itching and the rash isn't as angry looking. I think it will take a little while before the rash completely disappears since there was so much of it. But like I said, it is getting better and that what is important.
Hey Julie, sorry to hear about the " rash' taking over your body.. I hope you get relief soon. I understand about wanting " normal" .. wishing you all the best ... MJ
Hey Julie, take a well deserved break and then see what's next. Saty as healthy as you can so you'll be ready for the next go. Good luck.
I really didn't get the rash too bad but that s--t knocked me on my arse. I'm glad those twelve weeks are over.
Now it's turning into an emotional roller coaster.
:)
I knew that Incivek was bad news, was thankful to have been on Victrelis but felt horrible about how those who were using Incivek suffered.
Just yesterday I read the following on hepatitis-central.com:
"Vertex's Hepatitis C Drug Receives Another Blow With FDA Warning
Published December 19, 2012
Dow Jones Newswires
The Food and Drug Administration on Wednesday placed a new label on Vertex Pharmaceuticals Inc.'s (VRTX) hepatitis C drug Incivek, warning patients that the drug has caused fatal skin rashes in some patients.
Two patients died after developing severe skin rashes while taking Incivek, used to treat the viral liver disease, the FDA said. The warning label, known as a black box warning for its prominent placement and black border, is the most serious warning issued by the regulator, and is a further blow to Vertex's hepatitis C program.
Continue reading this entire article:http://www.foxbusiness.com/news/2012/12/19/vertex-hepatitis-c-drug-receives-another-blow-with-fda-warning/ "
Fatal skin rash? Good Lord, and I thought that peginterferon was pure-evil poison. I hope that the "oral only" regimens being tested will be taking a less toxic approach to cure.
I had the exact same reaction on Insivek and was taken off 4 days before I was to finish the 12 weeks. I continued with treatment (Riba and Interfuron), but was also on Prednesone to kill the allergic reaction. If you look at my posts you'll see the nightmare that evolved from it all. I am almost 6 months post-treatment (SVR so far, so good!) But I'm still struggling with residual stuff, some of which was directly related to that damn rash! I too would have my flare-ups around 3:00 each afternoon once the major rash was under control, but I stayed on Benedryl and a nightime antihystimine long after I finished the Prednesone. This is serious business and doesn't leave the system quickly AND may cause other issues in the long run so don't ignore a rash that progresses or changes.
Both peg and ribaviran can cause rash. Peg is usually more localized around injection site and usually more of an iratation than rash. Ribarash can be more troublesome. I had to stop treatment last time due to the ribarash. This time I have it also, but i'm forcing myself to not quit. I'd hoped it would go away when i finished the incivek, I guess the incivek rash did clear up but i'm still left with the ribarash. I have several RX lotions, potions and creams but they don't clear it up, just make it more tolerable. Not everyone is affected by them though thankfully.
Hi Julie, Just a thought. I have read reports of changing from Incivek to Victrelis due to the Inciv rash. It seems a shame to completely stop Rx when you have your Undet. and wait for new drugs. Having been on a PI, you will find it difficult to get on a trial. Perhaps it's worth discussing with your doctor. Cheers.
I am looking forward to letting my body heal and get back to what it knew as "normal." The doctor and I also talked about new drugs and injection free interferon. I will still be checking in at times. Thanks for understanding! Love you all!!
Yes, Deb
Incivek rash could be the one of the SX reasons to halt treatment...
You have to take preventive measures not to get to that - apply moisturizing lotions (I use Neutrogena) at least twice a day, cream liquid soap (like Dove),
drink a lot of water to wash out toxins.
Interferon can also cause kinda burning skin sensation and redness but its different from Incivek rash. Look up in a search box for pictures.
Oh well Julie, new medicine is coming soon. Good luck.
Sorry, I have a question. Is the rash issue something to do with Incivek only? Or if you are on the two medicine (peginterferon and ribavirin) do you also get rashes?
I am so sorry you went through such a bad time of it. Sounds like a nightmare!
-- Edited by DJ on Monday 24th of December 2012 08:41:04 PM
Went to see doctor today. Am being taken off treatment due to side effects. Told to take it easy and let my body heal; doc was surprised at how my rash looked and my week 3,4 and 8 peg injection sites; vl in 3 months (20% chance I still may be SVR. Who knows?) Woke up with NO TEMP today - first time in about 10 days. Yea me!
If rash isn't gone by mid-January, I am to see a dermatologist.
-- Edited by zuzusfam on Monday 24th of December 2012 06:44:55 PM
Instead of putting my cream on each spot, it would be easier and less time consuming if I bathed in it. It is literally all over my body. It's not on the soles of my feet thank God! I am still drinking tons of water. The hydroxyzine pills they gave me seem to work very well. I take 2 at night for the sedative effect.
I am keeping track of my fevers also so when I see the doc, I can let him know that info as well. (Never over 100.4 but I know when I have one!)
Incivek is know to be quite toxic. Do not forget to drink a lot to wash out toxins. This may reduce rash risk as well.
This is what I've been doing about the rash:
-Like Gatekeep, I also am using Hydroxyzine at 6pm and it works along with Zolpidem(Ambien) and Melatonin at 9pm to sleep. I now get my sleep. Very happy about that and can function during the day.
-I also use the Aveeno cream in the shower. Do not rough up rash areas, only rub it on and rinse it off.
-I also use Betamethasone DP prescription cream. I keep putting it on each spot and it keeps going away but re-pops up somewhere else. This cream works good for me. Rash seems to be in retreat.
I hope this helps you out.
Good luck!
[quote="karentaliesin"]ody) wasnt zuzusfam taken off the tele early , for this reason,
On Thursday afternoon, I ended up in the ER because of the rash. (I had stopped the incivek on Monday because of the rash) The med staff at the ER were very good but none had ever seen a rash like I have. They contacted my hep doc's office and I am off all meds until Monday when I go back to see the doctor. In the ER, I received an IV with benedryl and something else. (I think it was pepsid. I knew what it was before I started typing lol). The staff was also going to give me a steriod but when they spoke with my doctor's office, the office said no. The reason I ended up in the ER was that around 2 p.m. on Thursday, my arms started to itch, burn and hurt like crazy. I tried everything I have in the house to stop it but nothing helped. (One of the methods I used was slapping my forearms. I now have bruises.) I was screaming and crying because I was sooo miserable. About 3, I told my husband that I needed to go to the ER. Beore I was discharged, the ER doc said that I have to see a doctor EVERY DAY beccause the rash could turn into something that is really bad. He said the name of the syndrome but once again, I don't remember what it is.
On Friday, I followed up with my doctor's office and saw the RN. While I was there, I got an rx for hydroxyzine hcl 25mg tabs. I take 1 for itching, 2 for sedation every 4-6 hours. I start itching around the 4 hour mark, btw. I follow up with the doctor on Monday. It will be interesting to hear what the doctor has to say about this whole thing.
The doctors need to put more emphasis on the rash sx. When I started to get the rash, I thought "oh well, just a sx of the tele." I should have let my team know. Hindsight is 20/20 and I am a little mad at myself for not being more vocal about how bad the rash actually is. I wish the pharma people would have pictures of the rash with a caption "If your rash looks like this, go to the doctor." I had no way of knowing what is considered bad except when the doctor said "if it's on your face, you need to stop taking the tele." I have also heard and read that the rash and tele will be out of my system in about a week. I am not going to hold my breath on that one.
I can tell the tele is leaving though, because my head is a somewhat clearer and I don't "feel" like a walking zombie. I am glad to be off meds even if it's only for a few days. I am starting to wonder if I am not the best candidate for tx. This has been very tough going for me and my family. It has been hard to stay positive and I have cried more this past week than I have in the last 6 months. (Mostly on Thursday because of the itching. I was crying in the ER in front of the doctor who had a snow white beard, was a little portly and wore a red long sleeved t-shirt under his scrubs. I don't like crying in front of Santa.) But...today is a new day and we will see what it will bring. xxoo