Aa
Scared
I was on Interferon and Ribavirin about 10 years ago for almost a year and my virus came back and I have been waiting patiently for new meds and I finally found a doctor in my area that specializes in Hep C. I am starting my new treatment with Incivek, peginterfron and ribavirin next week. I've been reading all the post of the reactions to this new treatment.
I want to know from you the soldiers that have gone thru this what are really the reactions:
1. Skin irritations
2. Weight Loss, How much weighty did you lose
3. Daily activity
4. What recommendations now that you have finished, what you would of done differently in the beginning and what you found worked that the professionals didn't tell you.
I'm just scared, now that I am 10 years older, how this all will be like, I'm really afraid of these skin rashes and what damage it can cause to my skin. I thank you all in advance for all your wise information. I am so glad that I can really discuss this with people in the KNOW.
I want to know from you the soldiers that have gone thru this what are really the reactions:
1. Skin irritations
2. Weight Loss, How much weighty did you lose
3. Daily activity
4. What recommendations now that you have finished, what you would of done differently in the beginning and what you found worked that the professionals didn't tell you.
I'm just scared, now that I am 10 years older, how this all will be like, I'm really afraid of these skin rashes and what damage it can cause to my skin. I thank you all in advance for all your wise information. I am so glad that I can really discuss this with people in the KNOW.
If my old grumpy butt can do it this is just a speed bump in life and if it dose any thing for us it will give us more respect for the life we have
Thank you everyone that took the time to post, I have been very nervous as time ticks down to wednesday. I hope to God that I can do this and continue the treatment to its finish. Keep the suggestions going, anything that can help with the rashes and what healthly fat alternatives please let me know. Will be posting as I go along with this proceedure.
I agree with being 30 years sober honesty is the most important thing in my life and with that being said in my case it may be we get what we play for and we have to except the responsibility for our actions and quiting the treatment early should never be an option if we do not finish what we started nothing we do will ever be done. but be careful what you say I can do 1 shot and like this week no affect except for some chills last night the week before I was sick and in bed for 5 days and next week will prob not be good the rebetol seems to have no side affects but approx 20 minutes after taking the victrilis I have to lay down for an hour or 2 I just figure the alternative could be worse and as I see in some of the posts here it is for some be strong and in a short time it will hopefully be done. something to think about ny neighbor was treated for 6 months and he is not 8 years virus free. Good Luck All
I too was on Interferon and Ribevarin for 48 weeks between 2001 and 2002 - horrendous! On 1 February this year I started on the Triple Therapy with a 4 week lead of Interferon and Ribevarin. This was nothing compared to last time - in fact I was bouncing with energy the morning after my injection! But then came the PI - Boceprevir in my case - 3 weeks so far! This has made a terrific difference to my energy levels as I want to sleep all the time - still only the usual really dry skin with rashes round my elbows. My biggest problem is pain around the bottom of my spine - medics say it is due to interference of my pain receptors and have suggested applying a pain relief patch once a week after my injection. I'm glad I waited for this treatment as the results are already showing good - side effects are just the price we have to pay! The important thing is not to ignore any symptoms and alleviate them where possible to enable the full treatment course - good luck!
Iv found with the rashes as you will notice you even smell like the meds I believe as in some 1 said itchy bottom the meds will seeps out more in the lower parts of your bodies I found 2 showers a day decreases even stops some of the rashes and hand cream helps with the others. also my Dr stated they will prob start phasing out the peglntron if they keep getting the results they are with the victrilis he is a state internal med Dr that is specializing in the hep program. and I wonder it they already are giving some placebos as some shots affect me worse than other times. as in tool my shot this Fri and had only a few hours of flue like symptoms on Sat
I'm 54 years old on week 12 no virus detected at week 8 Side affects exhaustion, flue like symptoms for 5 days after I take the shot, rash on ankles, some confusion cant seem to focus like before, some upper abdominal pain, itching all over feels like pins and needles, headaches, lack of balance, eye site not as good as before, feet feel hot especially at nights, insomnia, arthritis seems to be getting worse it was already moderate I seem to have to use my cane more and more, 20 minutes after I take the Victrelis I need to lay down for a few hours, some but not near the problems with the Rebatol all in all if it cures it I'm doing well just wish I was done my neighbor has been virus free for 8 years good luck and be strong its better than the alternative.
Hi there I guess not every body is the same I'm on triple treatment and I'm on week 7 I have svr at week 4 so I have responeded well to the virus the side effects which I have are a itchy bottom and now I have itchy dry eyes apart from that I'm doing really well
The Incivek product insert should accompany your meds
Here is the adverse side effect chart that compares frequency of sides of those who were on triple (with Incivek) and those on dual (peg & riba)
http://www.medhelp.org/user_photos/show/374371?personal_page_id=414409
As you can see
rash
diarrhea
hemorrhoids
nausea
vomiting
are WAY up there for triple compared to regular dual therapy. It is good you are mentally preparing yourself but they don't happen to everyone. In some respects I think this forum is an example of things the negative aspects of treatment or things that go wrong. People tend to reach out when they are scared or curious and less so when things are going OK.
I only had the nausea and vomiting. It was horrible at first and it freaked me out since I treated before and was not expecting it. I had profound diarrhea when I did not take enough fat with my Incivek.
Honestly I think the most important aspects of triple with Incivek is
1) Recognizing and treating sides aggressively
2) Having your labs on the right dates
3) Recognizing and treating sides aggressively
Here is the adverse side effect chart that compares frequency of sides of those who were on triple (with Incivek) and those on dual (peg & riba)
http://www.medhelp.org/user_photos/show/374371?personal_page_id=414409
As you can see
rash
diarrhea
hemorrhoids
nausea
vomiting
are WAY up there for triple compared to regular dual therapy. It is good you are mentally preparing yourself but they don't happen to everyone. In some respects I think this forum is an example of things the negative aspects of treatment or things that go wrong. People tend to reach out when they are scared or curious and less so when things are going OK.
I only had the nausea and vomiting. It was horrible at first and it freaked me out since I treated before and was not expecting it. I had profound diarrhea when I did not take enough fat with my Incivek.
Honestly I think the most important aspects of triple with Incivek is
1) Recognizing and treating sides aggressively
2) Having your labs on the right dates
3) Recognizing and treating sides aggressively
I got the ski n rashes it was on the back of my hands
they were like blisters that itches and when you just rub them a little the skin would wipe off the blister
they gave me an anti itch cream for it but i guess it wasnt to bad
the med victrelis was origanaly called boceprivir during the study phase which is what i took and the results are fantastic everone in the study that i was in cleared the virus and noone has relapsed yet
it will not be any thougher than the last time you were on treatment just hang in there
they were like blisters that itches and when you just rub them a little the skin would wipe off the blister
they gave me an anti itch cream for it but i guess it wasnt to bad
the med victrelis was origanaly called boceprivir during the study phase which is what i took and the results are fantastic everone in the study that i was in cleared the virus and noone has relapsed yet
it will not be any thougher than the last time you were on treatment just hang in there
My hubby had moderate skin reactions while on Incivek. They looked and felt worse than moderate, but according to Vertex's chart, they were moderate. He took Atarax, used Eucerin moisturizer, put Triamcinilone ointment, and we put tea tree oil on the parts of the rash that blistered a bit (small area). He had little/no appetitite while on Incivek, so it was hard to force down the grams of fat and small meals that are required with the medications, but he did it. He didn't lose any weight. He worked every day, and his job is a physical job. I tried to get him to take short walks outside for fresh air, but much of the time, he was just too tired when he wasn't at work. What would we do differently? Nothing really. His hepatologist is very good, and the nurse practitioner who oversees the day to day care of patients in treatment is also very good. They were very responsive and right on top of all side effects. I think that is the key, be prepared ahead of time, have things at home that you might need, and make sure your treating team will be responsive about prescribing things to manage side effects quickly.
You didn't ask about the anal/rectal discomfort, bleeding, and pain that some people have with Incivek. My hubby had that, and it was one of the most difficult side effects. He used Balneol, an over the counter wash/cream, to keep the area clean and comfortable. He took Loperimide once a day, an over the counter antidiarrheal, to help keep the stools somewhat firm, but not too firm. He used baby wipes as well. That is a difficult side effect.
Advocate1955
You didn't ask about the anal/rectal discomfort, bleeding, and pain that some people have with Incivek. My hubby had that, and it was one of the most difficult side effects. He used Balneol, an over the counter wash/cream, to keep the area clean and comfortable. He took Loperimide once a day, an over the counter antidiarrheal, to help keep the stools somewhat firm, but not too firm. He used baby wipes as well. That is a difficult side effect.
Advocate1955
hi and welcome to the site my hubby on wk20 and he to was on teleprevirtx. He only got rash for a couple of wks but he lost 1.5 stone he had no appetite at all but now he finished with teleprevir it started to slowly coming back.Try and do jab just before yougo to bed so you will sleep through most of sx Everybody different so just take each day as it comes. Good luck and keep us posted
I took VIC, not INC, but the one thing I would have done differently is to get in to see a dermatologist sooner. The rash was not supposed to be bad with VIC, not like INC, but I had a horrid rash around my ankles and all up my calves for almost my entire 48 weeks - also a lot of swelling. I used OTC creams and ointment and whatever I could find. The hepatologist's PA rxed some steroid cream but it didn't last and she would not give me another. I have listened to presentations on CCO (Clinical Care Options) that have said the OTC steroid cremes are adequate. They are not. I did not go to a dermatologist because I (mistakenly) thought he would rx an oral steroid and I would not do anything that might jeapordize treatment. I finally went to a dermo about a month after I completed tx and she rxed a strong steroid ointment that cleared up my legs for the first time in a year. Had I known that up front I would have been pounding down her door a year before.
The other recomendation is , as idyllic said, discuss anemia. INC is no better than VIC, and at least 50% have anemia with it. It can be debilitating. Find out what the doctor does about it - dose reduction, or epogen or both. I did both. I too work in an office and worked all through tx and really can't imagine staying home. I worked at far less capacity and cut out all other activities out of necessity
What were your results your first treatment? Are you a nonresponder or a relapser? You are doing the right thing. Get this over and get on with your life. If you are a relapser and not cirrhotic or a nonresponder, you are probably looking at 28 weeks and that is wonderful compared to 48.
frijole
The other recomendation is , as idyllic said, discuss anemia. INC is no better than VIC, and at least 50% have anemia with it. It can be debilitating. Find out what the doctor does about it - dose reduction, or epogen or both. I did both. I too work in an office and worked all through tx and really can't imagine staying home. I worked at far less capacity and cut out all other activities out of necessity
What were your results your first treatment? Are you a nonresponder or a relapser? You are doing the right thing. Get this over and get on with your life. If you are a relapser and not cirrhotic or a nonresponder, you are probably looking at 28 weeks and that is wonderful compared to 48.
frijole
Re; weight loss. I found I lost a lot of the fluid I had been carrying around with me, so 5 or 6 kgs went in a few days. All the dairy fat I eat with meds is puffing my stomach.
And that brings us to eating the 20 grams of fat with the Incidious.
It's so important that these times you set for the 8 hourly Incidious, and the 12 hourly Ribavirin are strictly maintained. And you must have the pills, ideally 20 minutes after eating, but 30 minutes OK. I get stomach upset if I don't do this. Then I have to have Mylanta or the like. I can't eat first up, so I have 20 gms of Greek Yoghurt at 6.30am for my 7am meds.
I try to have a fresh vegie juice and some toast or something about 11am, being mindful that at 2.30 I have to eat 20 grams of fat again for 3 pm meds. this is when I can get the most balanced diet happening. At 7, I can have fish and a big salad etc. For the 11pm meds, I have yoghurt again, as I have a small hiatus hernia, and can't eat anything before going to bed. I have icecream on hand for those nights when I can'[t deal with more yoghurt I think all this dairy may be upsetting my stomach, but this is just for the first 12 weeks. After that, we go back to eating what and when we like.
And that brings us to eating the 20 grams of fat with the Incidious.
It's so important that these times you set for the 8 hourly Incidious, and the 12 hourly Ribavirin are strictly maintained. And you must have the pills, ideally 20 minutes after eating, but 30 minutes OK. I get stomach upset if I don't do this. Then I have to have Mylanta or the like. I can't eat first up, so I have 20 gms of Greek Yoghurt at 6.30am for my 7am meds.
I try to have a fresh vegie juice and some toast or something about 11am, being mindful that at 2.30 I have to eat 20 grams of fat again for 3 pm meds. this is when I can get the most balanced diet happening. At 7, I can have fish and a big salad etc. For the 11pm meds, I have yoghurt again, as I have a small hiatus hernia, and can't eat anything before going to bed. I have icecream on hand for those nights when I can'[t deal with more yoghurt I think all this dairy may be upsetting my stomach, but this is just for the first 12 weeks. After that, we go back to eating what and when we like.
Welcome to these strange days indeed on triple therapy.
I began tx on 19th Feb, with Incivo (Incidious I call it.) immediately making itself known. I was advised to get some Imodium (anti diarrhoea tablets) and Proctosedyl ointment. If you get the diarrhoea and itchy, burning anus, best things straight away.
Rashes. I had rashes come up on my shins after 2 days, and also on my inner arms. The ones on my legs looked like Incivo rash, the ones on my arms looked like riba rash. Treat the same. I washed from day one with a medicated body wash, a couple of times a day. Cool showers. I used a moisurizer (Aveeda has good products) after showering, and at other times during the day. Prevention is better than a cure. Be fanatical about not using any soaps, shampoos, etc. Watch your skin. You can't bathe and moisturize enough. Have a tube of something like Dermaid on hand to treat any rashes in the early days. If you don't get any relief, there are stronger hydrocortisone creams available on prescription.
My haemoglobin levels started to crash after 3 weeks. Vit B12, Vit D3, Vit C (1000mg x 3 a day), and possibly Folate (Waiting to have these levels tested this week). I took Vit C anyway every day.
Stretchy legs, take Magnesium.
Drink half your body weight in water. At least 4-6 litres a day. I can't stress how dehydrated these meds make you.
Teeth. If you have time before you begin therapy, get your teeth looked at. Tell the dentist what you are about to go on, if you trust them. An incidious side affect is retreating gums, and bleeding. Buy a gentle toothbrush, and some very sensitive toothpaste.
Vaseline. Mouth sores can be a problem for some. I just smear a bit of vaseline on the inside of my lips to prevent drying out, especially at night.
Y9u may not have any of these troubles. I did. I wasn't warned about what to expect. The Liver Clinic just said some rashes to be expected.
You can message me at any time to let me know where you're at. We will be doing this journey together, so a problem shared is a problem halved, so they say.
I began tx on 19th Feb, with Incivo (Incidious I call it.) immediately making itself known. I was advised to get some Imodium (anti diarrhoea tablets) and Proctosedyl ointment. If you get the diarrhoea and itchy, burning anus, best things straight away.
Rashes. I had rashes come up on my shins after 2 days, and also on my inner arms. The ones on my legs looked like Incivo rash, the ones on my arms looked like riba rash. Treat the same. I washed from day one with a medicated body wash, a couple of times a day. Cool showers. I used a moisurizer (Aveeda has good products) after showering, and at other times during the day. Prevention is better than a cure. Be fanatical about not using any soaps, shampoos, etc. Watch your skin. You can't bathe and moisturize enough. Have a tube of something like Dermaid on hand to treat any rashes in the early days. If you don't get any relief, there are stronger hydrocortisone creams available on prescription.
My haemoglobin levels started to crash after 3 weeks. Vit B12, Vit D3, Vit C (1000mg x 3 a day), and possibly Folate (Waiting to have these levels tested this week). I took Vit C anyway every day.
Stretchy legs, take Magnesium.
Drink half your body weight in water. At least 4-6 litres a day. I can't stress how dehydrated these meds make you.
Teeth. If you have time before you begin therapy, get your teeth looked at. Tell the dentist what you are about to go on, if you trust them. An incidious side affect is retreating gums, and bleeding. Buy a gentle toothbrush, and some very sensitive toothpaste.
Vaseline. Mouth sores can be a problem for some. I just smear a bit of vaseline on the inside of my lips to prevent drying out, especially at night.
Y9u may not have any of these troubles. I did. I wasn't warned about what to expect. The Liver Clinic just said some rashes to be expected.
You can message me at any time to let me know where you're at. We will be doing this journey together, so a problem shared is a problem halved, so they say.
Greetings and welcome.
Sorry about your relapse. I treated before and had to treat again as well. Is there any particular reason you selected Incivek over Victrelis? I finished 48 weeks of Triple with Incivek in December.
What stage of fibrosis are you? Do you remember when the virus became undetectable the last time you treated?
Skin Irritations:
I was trying to find the % on the studies of people who actually develop the rash. It might seem worse than it is since people who get the rash tend to post more. That, and Incivek added a black box warning last December
http://www.fiercepharma.com/story/incivek-patients-died-skin-reactions-vertex-says/2012-12-19
Here's a link about the rash
http://www.medhelp.org/posts/Hepatitis-C/Made-a-Decision---Rash/show/1709098
Weight loss/Gain
It varies for everyone. The 20 grams of fat you have to take with each dose (three times a day) can amount to some heavy duty fat calories. On the other hand the nausea can deter the appetite so I doubt many people over eat on these meds. I know I sure couldn't. There are meds to help with the nausea - if you get it, that is.
Daily Activity
Some people work while treating. I am ever so glad I did not have to work the entire time during the 12 week Incivek period. I would have been ineffective and likely have gotten sued or something. If your job involves heavy duty labor or precision it might be a challenge to say the least. Having said all this I would take care of sick leave, disability or other financial arrangements (if possible) so you have a Plan B for your off days.
______________-
Now that I am finished I would have understood the treatment duration rules better since when I started treatment I thought I was only going to have to treat 24 weeks. About 5weeks in I realized I was going to have to treat 48 weeks,.
One thing I will mention is to make sure you and your doctor agree in advance how you will address anemia. It is a very common side effect of protease inhibitors. While studies have shown reducing Riba does not jeopardize SVR (in my opinion) it is still helpful to be able to take the full dose of Riba and have access to Procrit, if for anything to improve the quality of life.
Hopefully others will post.
There is all kinds of good info on here and lots of support.
Sorry about your relapse. I treated before and had to treat again as well. Is there any particular reason you selected Incivek over Victrelis? I finished 48 weeks of Triple with Incivek in December.
What stage of fibrosis are you? Do you remember when the virus became undetectable the last time you treated?
Skin Irritations:
I was trying to find the % on the studies of people who actually develop the rash. It might seem worse than it is since people who get the rash tend to post more. That, and Incivek added a black box warning last December
http://www.fiercepharma.com/story/incivek-patients-died-skin-reactions-vertex-says/2012-12-19
Here's a link about the rash
http://www.medhelp.org/posts/Hepatitis-C/Made-a-Decision---Rash/show/1709098
Weight loss/Gain
It varies for everyone. The 20 grams of fat you have to take with each dose (three times a day) can amount to some heavy duty fat calories. On the other hand the nausea can deter the appetite so I doubt many people over eat on these meds. I know I sure couldn't. There are meds to help with the nausea - if you get it, that is.
Daily Activity
Some people work while treating. I am ever so glad I did not have to work the entire time during the 12 week Incivek period. I would have been ineffective and likely have gotten sued or something. If your job involves heavy duty labor or precision it might be a challenge to say the least. Having said all this I would take care of sick leave, disability or other financial arrangements (if possible) so you have a Plan B for your off days.
______________-
Now that I am finished I would have understood the treatment duration rules better since when I started treatment I thought I was only going to have to treat 24 weeks. About 5weeks in I realized I was going to have to treat 48 weeks,.
One thing I will mention is to make sure you and your doctor agree in advance how you will address anemia. It is a very common side effect of protease inhibitors. While studies have shown reducing Riba does not jeopardize SVR (in my opinion) it is still helpful to be able to take the full dose of Riba and have access to Procrit, if for anything to improve the quality of life.
Hopefully others will post.
There is all kinds of good info on here and lots of support.
I would have read this the following website info before and during treatment.
"hepatitis.va.gov".
"hepatitis.va.gov".
I'm only on the peginterferon and ribavirin, and I just did my 5th injection, but it hasn't been that bad. I get achy after the shot, and am tired and nauseous the next day, but for the most part I am fine. I've lost a few pounds, and am able to work - I have an office job - with no real issues. My stomach was more upset the first few weeks, but it is getting better now. I was also told not to pinch where I inject, as it tends to cause more redness and bruising. I have some splotchy red spots on my stomach, but that is it. I am very dried out feeling, and use a lot of lotion. I have my husband rub lotion on my back a few times a week. I also drink a lot of water. The NP said that people who drink more water tend to have fewer side effects, so maybe that is what is helping me. I drink between 3-6 liters per day. Hopefully it won't be too bad for you.
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