Aa
Rash Update
Well, after having been driven to the edge of madness this week by my ever increasing rash and itch, I finally called my dermatologist yesterday. I explained the urgency of the situation and was given an appointment with her PA today. When we met, I quickly told him the circumstances of my treatment, the drugs and dosage and then proceeded to show him the rash. His sharp intake of breath when he saw my back was all it took to confirm that I was not just 'all in my head' with this. I mentioned that my doctor was not inclined to give me anything more than basically over the counter hydrocortisone, and he agreed that that would not even begin to touch what I was dealing with. We discussed fluocinonide and he decided to step that up a notch and prescribe clobetosol .05% for me to be applied twice a day. This stuff is so strong I cannot use it near/on my face and can only use it for two weeks. I may have some steroidal side effects (swelling, water retention) - but if it takes care of this incessant itch from you know where, I'm in for the duration.
I only have two weeks before I finish the Incivek so I am hoping that those fourteen days will pass quickly and then, hopefully, this rash will begin to abate. Now that the weather has taken a turn for the warmer here, it is really miserable to even walk outside.
I posted two pictures... one of my back ... and one of my right arm site injection 'thing' that has been on my arm for two weeks now. It is actually clearing up a bit, but not much. The pictures are in my photo album. Actually, the one of my back, which shows the individual little spots pretty well, doesn't do justice to the all over redness and lumpiness of this mess. I didn't want to post a picture of my chest/stomach but if you take the back times two... that is what it looks like. I can't figure out why parts of it feels so lumpy. The rash is on the backs of both arms, my legs, and is creeping up into my hair. Oh joy.
At least I have a sympathetic doctor now.
I only have two weeks before I finish the Incivek so I am hoping that those fourteen days will pass quickly and then, hopefully, this rash will begin to abate. Now that the weather has taken a turn for the warmer here, it is really miserable to even walk outside.
I posted two pictures... one of my back ... and one of my right arm site injection 'thing' that has been on my arm for two weeks now. It is actually clearing up a bit, but not much. The pictures are in my photo album. Actually, the one of my back, which shows the individual little spots pretty well, doesn't do justice to the all over redness and lumpiness of this mess. I didn't want to post a picture of my chest/stomach but if you take the back times two... that is what it looks like. I can't figure out why parts of it feels so lumpy. The rash is on the backs of both arms, my legs, and is creeping up into my hair. Oh joy.
At least I have a sympathetic doctor now.
You have my continued sympathy and hope each gets better. Since you are a 1/13 starter like me, as of right now, we have about 32 doses left; but that means you have taken 220 doses. This is the final 11 days; Wednesday will be single digits, the end of incivek is close.
Besides the rash going away or at least calming down; no more every 8 hour forced fat feedings. 12 week UND will be in order.
Post often as needed, We'll offer our support to help get you there.
Just make sure to check in with the doctor frequently and make sure it is something that toughing it out is the right thing. We have to take care of our overall health also.
Besides the rash going away or at least calming down; no more every 8 hour forced fat feedings. 12 week UND will be in order.
Post often as needed, We'll offer our support to help get you there.
Just make sure to check in with the doctor frequently and make sure it is something that toughing it out is the right thing. We have to take care of our overall health also.
Thanks Glenn....all I know is that it comes in one of those little Pre-filled vials with the funny little top where the needle is. I am still going to follow up on this for the sake of other people in the future so that they won't have the injection site issues.
Rash/hives is worse today. Covering more of my legs and upper arms. Stomach is worse too. Having to stay in and not go anywhere
Rash/hives is worse today. Covering more of my legs and upper arms. Stomach is worse too. Having to stay in and not go anywhere
Hi LF12: I looked at the links Pooh provided and I realized that Pegasys can come in a vial instead of the pre-filled syringes. So, my previous comment about looking at the syringe for the name "Pegasys" may not apply to your medical center. Regardless, I think they should tell you whether they are giving you Pegasys or Pegintron.
Like I previously mentioned, I've had both Pegasys or Pegintron. The Pegintron was very hard on me so I switched to Pegasys during treatment (2003). I eventually became a breakthrough on treatment. Of course, I'll never know if switching while on treatment was a factor in the breakthrough. Even if it was, I accept responsibility for my decisions and it was my decision to make the switch. That said, if you discover you were received Peginton so far, I'm thinking you should stay with the Pegintron. Best, GB
Like I previously mentioned, I've had both Pegasys or Pegintron. The Pegintron was very hard on me so I switched to Pegasys during treatment (2003). I eventually became a breakthrough on treatment. Of course, I'll never know if switching while on treatment was a factor in the breakthrough. Even if it was, I accept responsibility for my decisions and it was my decision to make the switch. That said, if you discover you were received Peginton so far, I'm thinking you should stay with the Pegintron. Best, GB
Here are a couple of links that show the injection sites:
http://hepatitis-c.emedtv.com/pegasys/giving-the-pegasys-injections-p2.html
http://www.faetc.org/Hepatitis/Patient/Peg_2b/How_To_Self_Inject_Pegasys.pdf
http://hepatitis-c.emedtv.com/pegasys/giving-the-pegasys-injections-p2.html
http://www.faetc.org/Hepatitis/Patient/Peg_2b/How_To_Self_Inject_Pegasys.pdf
Sorry - meant to address that last comment to you. Boy am I brain fogged today or what!!!
Yes. I thoroughly read the medication guide this afternoon. So the next step is to check the syringe on Friday. Something else to take them to task for....but if it prevents someone else from having this semi-open wound on their arm, then I guess that will be a good thing. I remember specifically asking about the I ejection site....expressing concern about site injection necrosis and other problems. I was reassured that alternating arms would be sufficient protection from such an occurrence. I have a place on the back of my left arm as well. It just doesn't have the 50cent piece sized raw spot with it.
Oh joy.
Thanks for the info.
@ advocate I may step up my dosage of the Atarax for nighttime. I am on 25 mg every 6 hours but may take an additional 25 mg right before bedtime. I have only taken about three a day at this point.
Oh joy.
Thanks for the info.
@ advocate I may step up my dosage of the Atarax for nighttime. I am on 25 mg every 6 hours but may take an additional 25 mg right before bedtime. I have only taken about three a day at this point.
Hi LF12: If the only weekly injection you received was in the arm, and you were approved to receive Pegasys, then I assume you received the Pegasys in the arm.
I was reading up on Pegasys and Pegintron this morning. Both Pegasys and Pegintron are pegylated interferons, but there are some differences.
This is what I recall reading. Pegasys has a larger PEG. As a result, it appears Pegasys doesn't travel around the body as much -- that's normally good because in my experience less traveling means less side effects. Pegasys gets metabolized by the liver while Pegintron gets metabolized by the kidneys.
Let's assume you were really receiving Pegasys injections (and not Pegintron). Injecting Pegasys into your arms for about 6 weeks may have something to do with the severity of the surface damage to your skin. Then again, it may have nothing to do with it. I honestly don't know enough to speculate.
Recommend you first confirm that the medical center is giving you what you are expecting (i.e., Pegasys). When you go for your next injection, ask them to show you the syringe before they give you the shot. If it is Pegasys, then it will say "Pegasys" on the syringe.
If it turns out the medical center was really giving you Pegasys in a part of your body that was not in compliance with the medication guide, and after you thoroughly read the medication guide, you might want to research whether or not it even makes a difference administering Pegasys in the arm before deciding how to proceed beyond that point. V/r, Glenn
I was reading up on Pegasys and Pegintron this morning. Both Pegasys and Pegintron are pegylated interferons, but there are some differences.
This is what I recall reading. Pegasys has a larger PEG. As a result, it appears Pegasys doesn't travel around the body as much -- that's normally good because in my experience less traveling means less side effects. Pegasys gets metabolized by the liver while Pegintron gets metabolized by the kidneys.
Let's assume you were really receiving Pegasys injections (and not Pegintron). Injecting Pegasys into your arms for about 6 weeks may have something to do with the severity of the surface damage to your skin. Then again, it may have nothing to do with it. I honestly don't know enough to speculate.
Recommend you first confirm that the medical center is giving you what you are expecting (i.e., Pegasys). When you go for your next injection, ask them to show you the syringe before they give you the shot. If it is Pegasys, then it will say "Pegasys" on the syringe.
If it turns out the medical center was really giving you Pegasys in a part of your body that was not in compliance with the medication guide, and after you thoroughly read the medication guide, you might want to research whether or not it even makes a difference administering Pegasys in the arm before deciding how to proceed beyond that point. V/r, Glenn
The Hydroxyzine definitely helped me. In fact, now that I am on a much higher dose, the rash is finally disappearing, not gone, but less.
I think the fluocinoniode pintment helped with the rash and itching, but it is topical with some but nor much systemic absorption. So for me, the ointment was clearing up the rash in the places where I put thye oint. But it was not preventing the rash from being there and moving next door. I think the Hydroxyzine is working systemically, to prevent the rash (and also helps the itching). For me, the addition of Hydroxyzine was noticeable within as day or two, lighter rash, less rash, not much moving around.
Right now I am to the point where I don't have to use much ointment. I am taking about 150 mg. total per day, divided up into either 25 Mg or 50 Mg doses. 9My derm. doc. prescribed 50 mg every 6 hours so I am still under the dose I could take.
I think the fluocinoniode pintment helped with the rash and itching, but it is topical with some but nor much systemic absorption. So for me, the ointment was clearing up the rash in the places where I put thye oint. But it was not preventing the rash from being there and moving next door. I think the Hydroxyzine is working systemically, to prevent the rash (and also helps the itching). For me, the addition of Hydroxyzine was noticeable within as day or two, lighter rash, less rash, not much moving around.
Right now I am to the point where I don't have to use much ointment. I am taking about 150 mg. total per day, divided up into either 25 Mg or 50 Mg doses. 9My derm. doc. prescribed 50 mg every 6 hours so I am still under the dose I could take.
Oh my...need to not assume that I have typed correctly... I think that last sentence should have said the cold pack gives temporary relief.
So what does that mean, do you think, that they have injected the Pegasys stuff into my arm? I won't let them do it any more, that is for sure! I will see how this week goes before I ask for something like Neurontin. I have taken that before when suffering from a neuroma in my knee that developed after arthroscopic surgery.
@advocate - definitely taking cool showers and only staying in long enough to wash the bits that need to be washed the worst ;). Don't know about standing outside with no shirt. May get arrested for that LOL
@peter2012 How long before the itching/burning stopped? Or did it just abate a little bit?
The atarax seems to help soe, if nothing more than making me sleepy. It doesn't itch when I sleep. Also keeping a cool pack on it gives Ge,portray relief.
@advocate - definitely taking cool showers and only staying in long enough to wash the bits that need to be washed the worst ;). Don't know about standing outside with no shirt. May get arrested for that LOL
@peter2012 How long before the itching/burning stopped? Or did it just abate a little bit?
The atarax seems to help soe, if nothing more than making me sleepy. It doesn't itch when I sleep. Also keeping a cool pack on it gives Ge,portray relief.
I had a nasty, very itchy rash over most of my body a few weeks ago. I tried many ointments and antihistimines.
But only hydroxyzine worked. I was amazed at how quickly the burning and itching stopped after I began taking it.
But only hydroxyzine worked. I was amazed at how quickly the burning and itching stopped after I began taking it.
Hi LF12:
That's not the answer I was hoping to hear. According to the Pegasys medication Guide, Pegasys should be injected in the stomach or thigh (http://www.gene.com/gene/products/information/pegasys/pdf/pegasys_mg.pdf).
Pegintron can be injected in the stomach, thigh, or back of the arm (according to the Pegintron medication guide).
I've had both Pegasys and Pegintron. My experience is Pegintron is much harder on my skin so I was assuming you were on Pegintron .......
So sorry to hear the rash is spreading. Glad to hear the Atarax is helping. Atarax doesn't work for me, but we're all different. What does work for me is Gabapentin/Neurontin. Gabapentin is a powerful neurological drug that might offer you some relief. You may want to discuss with your doctor whether or not Gabapentin is a solution to some of your symptoms. V/r, GB
That's not the answer I was hoping to hear. According to the Pegasys medication Guide, Pegasys should be injected in the stomach or thigh (http://www.gene.com/gene/products/information/pegasys/pdf/pegasys_mg.pdf).
Pegintron can be injected in the stomach, thigh, or back of the arm (according to the Pegintron medication guide).
I've had both Pegasys and Pegintron. My experience is Pegintron is much harder on my skin so I was assuming you were on Pegintron .......
So sorry to hear the rash is spreading. Glad to hear the Atarax is helping. Atarax doesn't work for me, but we're all different. What does work for me is Gabapentin/Neurontin. Gabapentin is a powerful neurological drug that might offer you some relief. You may want to discuss with your doctor whether or not Gabapentin is a solution to some of your symptoms. V/r, GB
Yes, I think the Atarax should help with the hives as well as the itching. It may be possible you could take 1 Benadryl or another antihistamine, along with the Atarax, but you should check with your doctor first on that. The tea tree oil really helped the few little blisters that my husband got with his Incivek rash. You can pick it up as an over the counter at Rite Aid or someplace like that. My husband often took off his shirt, stood in front of the freezer, or stepped outside in the cool air, when the rash was at its worst. Cool showers, instead of hot showers, seemed to help as well.
Advocate1955
Advocate1955
I wonder if the meds help with hives too. Antihistamine and/or allergy meds help with hives. I had pre-existing ones, triggered by shellfish, other foods and certain cardboard fibers. They would start with swelling and itch. If I looked in the mirror and saw one, I would force myself not to scratch and go take some meds. If I did Not realize it was a hive and scratched, it would connect with other hives, covering a wide spread area and become the itch with no mercy. The only thing that helped was Benadryl or Allegra. I am allergic to Atarax, so I did not even consider it for the RIBA rash.
I had to go look it up in my drug approval forms, but I am on Pegasys.
@advocate1955 Thanks for that hint. I may try that in the shower. I'm only in the shower for maybe five minutes at this point. Gone are the days of long leisurely soaks in the tub!
The Rash at this point is spreading like wildfire. Although. Its not all blisters, it is definitely all lumpy and bumpy and covers my chest, my back, my arms, upper leg-front and back, and lower calf. It still itches like crazy, although some better with the addition of atarax. I think the clobetasol is helping with the redness and some of the itch. Even my huge cotton shirts rubbing against it cause it to itch. 12 days to go, though.
@advocate1955 Thanks for that hint. I may try that in the shower. I'm only in the shower for maybe five minutes at this point. Gone are the days of long leisurely soaks in the tub!
The Rash at this point is spreading like wildfire. Although. Its not all blisters, it is definitely all lumpy and bumpy and covers my chest, my back, my arms, upper leg-front and back, and lower calf. It still itches like crazy, although some better with the addition of atarax. I think the clobetasol is helping with the redness and some of the itch. Even my huge cotton shirts rubbing against it cause it to itch. 12 days to go, though.
In addition to the two prescriptions, my husband also used Eucerin body wash in the shower, Eucerin cream on the rash, and tea tree oil on the few blisters that did appear.
Advocate1955
Advocate1955
Hi LF12. I was thinking about the picture of your arm and the fact that your arm was where the doctor was initially giving you your pegylated interferon injections.
What brand of pegylated interferon are you on? Pegasys or Pegintron? Cheers, GB
What brand of pegylated interferon are you on? Pegasys or Pegintron? Cheers, GB
Believe it or not, I took my iPad with me today and showed him this very head! I was ready and was not going to leave there without a prescription for the atarax....which I have and have now taken my first one. I keep saying over and over to him that he has got to stay on top of the side effects or people are going to be missing doses, going crazy, and worse, dropping out of or having to quit treatment. It's just like he is a week late to the party on everything! hopefully, if I am the guinea pig, treatment will go more easily for those who follow.
@michael Your cold tips have already been employed. I haven't put the clothes in the fridge yet, but I do keep two Ice packs handy to alternate using on my back. The cold definitely helps.
@skiyaltr yep. We must have started on the same date....the 13th. Only 14 nights of force feeding left to go!
@1oftheclub Just hoping that with the clobetasol and atarax, the rash will become manageable. Then, I'm going to hope that just MOST of it goes away after Incivek. :)
Thanks to all of you for your continued support. I feel so much support and love from this community, I just could not be doing this without all of you!
Oh! On appositive note. Hemoglobin is still doing pretty well....it was 13.6 last week, five days after the transfusion. Today it is 12.3. We did discuss at what point to go for Procrit again, keeping in mind that it takes a few weeks to work...so that is a positive.
@michael Your cold tips have already been employed. I haven't put the clothes in the fridge yet, but I do keep two Ice packs handy to alternate using on my back. The cold definitely helps.
@skiyaltr yep. We must have started on the same date....the 13th. Only 14 nights of force feeding left to go!
@1oftheclub Just hoping that with the clobetasol and atarax, the rash will become manageable. Then, I'm going to hope that just MOST of it goes away after Incivek. :)
Thanks to all of you for your continued support. I feel so much support and love from this community, I just could not be doing this without all of you!
Oh! On appositive note. Hemoglobin is still doing pretty well....it was 13.6 last week, five days after the transfusion. Today it is 12.3. We did discuss at what point to go for Procrit again, keeping in mind that it takes a few weeks to work...so that is a positive.
I'm pretty disappointed that your treating doctor did not take this rash more seriously. I'm convinced that our doctor's early and aggressive stance on treating my husband's rash is the reason it did not become more severe. I know you were pushing yours, and that he wasn't budging, but he really needs to see some of these posts, and re-think his intervention policy. I'm sure he'll be very upset to know how disappointed I am ;)
My rash is also not all the same. I have some that are very small bumps. I have others that are like raised hives. I also have larger blotches that are raised but different from the other two.
Fluocinonide ointment stopped the iching faster than anything. It would stop within secons on the small bumps. Took a bit longer for the hives. Took the longest for the larger raised blotches. The fluocinonide ointment definitely helped, especially for the itching, and it did decreae the redness and severity of the rash. However, it was not until I got on the hydroxyzine (and a high enough dose) that I could see a marked difference in the rash and the itching. I think the fluocinonide dealt with the rash itself to stop the itching and decrease the inflammation. But I have come to the conclusion that is all it did. It did not deal with the actual internal cause of the rash, an allergic reaction to the drugs. Since I am still on the drugs, the fluocinoniode helps the rash and itching, but it is the Hydroxyzine that is actually countering the internal cause of the rash so the rash does not keep developing in new places. I cannot believe the difference in the rash since starting Hydroxyzine. It is too bad it took so long for them to get it right.
I think the doctors all need a long course in how to treat side effects from these drugs. So many of them are clueless.
Fluocinonide ointment stopped the iching faster than anything. It would stop within secons on the small bumps. Took a bit longer for the hives. Took the longest for the larger raised blotches. The fluocinonide ointment definitely helped, especially for the itching, and it did decreae the redness and severity of the rash. However, it was not until I got on the hydroxyzine (and a high enough dose) that I could see a marked difference in the rash and the itching. I think the fluocinonide dealt with the rash itself to stop the itching and decrease the inflammation. But I have come to the conclusion that is all it did. It did not deal with the actual internal cause of the rash, an allergic reaction to the drugs. Since I am still on the drugs, the fluocinoniode helps the rash and itching, but it is the Hydroxyzine that is actually countering the internal cause of the rash so the rash does not keep developing in new places. I cannot believe the difference in the rash since starting Hydroxyzine. It is too bad it took so long for them to get it right.
I think the doctors all need a long course in how to treat side effects from these drugs. So many of them are clueless.
The rash I had looked different in 3 ways.Not the same all over my body.Some were raised lines,some in blotches,some in raised bumps.It's good to see a dr for a script that is safe while your on tx.I wanted something external but my dr recommended pills after tx.For the itch nothing worked but ice therapy.Seems to deaden it.I put my clothes in the fridge to keep them cool.
I am not on the INC, but I do have a bit of Riba rash...mostly on my back and on my chest, starting to go on my face, getting those little red spots here and there...thank goodness for cover up! once you quit the INC you may have to still deal a bit with that...but from what I have heard the INC rash is so much worse, the the riba rash may be a vacation!
I hope with the medication for the rash, you are able to breeze through the rest of your two weeks1
I hope with the medication for the rash, you are able to breeze through the rest of your two weeks1
Sorry for the rash effects and sympathize. Mine came up in week 7; none of the OTC worked; atarax and Flucinonide did. At some point, it covered my whole body, but not my face. It has calmed down, but not gone away. I have cut back on the atarax to once a day and use the cream as needed. Today ends week 10, so have 14 more days on incivek to go.
So you must have started about about 1/13. Hang in there.
So you must have started about about 1/13. Hang in there.
Thanks for the detailed reply. I'm not wearing much of anything and stay in a nightshirt most of the day. I am going to the doctor today and will ask for the atarax.
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.
