Aa
Need to be prepared
I have been diagnosed with hep C and I will be starting treatment with Incivek which is a new drug just approved in May of 2011. I would like to know what to expect as far as side effects.
fightlikeagirl55
fightlikeagirl55
I'm recovering from breast cancer finished chemo, herceptin and radiation sept 2010 that is why I'm so anxious.
Some people do better than others. No one can tell you how you will feel. I can't imagine anyone telling you it will be easy. Some days will certain,y be better than others. I will try to describe based on some of my common experiences, please recognize I am not you.
While on incivek:
You will immediately have all the fluid sucked out of your body, WATER! With you at all times. You must drink lots. You will need to use lotion as your skin will get dry too. You should have some eye drops with you, your eyes will likely be dry too, I use genteal medium to moderate.
You will likely be very tired, getting up some days may be hard. You will find you need to sit more often. If your job is physical, this could be tougher on you. Keeping up with the housework, laundry and groceries will be challenge enough, I would not make a lot of plans for social times. Take care of yourself, tx time needs to be all about you.
It will likely be hard to focus your attention and you are sometimes very anxious and tired. The fog and the bobble head syndrome can be a challenge. Driving in heavy traffic for instance could be bad. I can remember driving to work, coming to a stop sign, stopping, and then realizing when I saw someone walk by that stop was not supposed to be a permanent state. I often fogged out during meetings. I had a very hard time communicating, hard to formulate thoughts into paragraphs and verbally convey them to others. I would lose my breadth while talking and on a couple occasions wanted to pass put. At the same time, others did not notice it as much as I did, I interviewed for a job and got it, I pulled together a number of complex stretegies foe the team to get us to some difficult goals.
The firehea can be a nuisance and so can the itch but most can keep these under control.
SOC and Post incivek:
I was happy I did incivek, it only last 12 weeks, you get the worst of it over, then it gets better as you drop down to SOC. You will still need to hydrate. Now I am sometimes mean (RIBA rage) and often just tired but not constantly exhausted like I was on incivek. The hair is thinning. I often feel like I have swallowed a lot of antihistamines and am very anxious but not as bad as incivek again. Sometimes I notice on simple tasks I have a hard time making decisions due to the focus/anxiousness, duh, just do it I would tell myself and push through. Some symptoms cycle through weeks based on your shot timing. I take a shot Friday night, Sunday through Monday are my worse days.
In general:
This will very likely impact your lifestyle. It's only temporary. It is hard, for some it becomes very hard, for most, some days are better than others but good days are relative, you always know you are treating. We get through it. SOC is easier than the weeks with incivek but incivek kicks hep c but, reduces your treatment time and increases SVR significantly from SOC only.
It seems like a cake walk compared to for instance cancer level chemo, alzhiemers, Parkinson's, bone marrow transplants, breast cancer. I still would not recommend it, you do it when and if your time is right. There are people I care for going through MUCH worse so it helps me to keep perspective. I have no space to complain. Taking it day by day, surviving, and will likely reach svr. Counting the weeks to each next milestone helps.
While on incivek:
You will immediately have all the fluid sucked out of your body, WATER! With you at all times. You must drink lots. You will need to use lotion as your skin will get dry too. You should have some eye drops with you, your eyes will likely be dry too, I use genteal medium to moderate.
You will likely be very tired, getting up some days may be hard. You will find you need to sit more often. If your job is physical, this could be tougher on you. Keeping up with the housework, laundry and groceries will be challenge enough, I would not make a lot of plans for social times. Take care of yourself, tx time needs to be all about you.
It will likely be hard to focus your attention and you are sometimes very anxious and tired. The fog and the bobble head syndrome can be a challenge. Driving in heavy traffic for instance could be bad. I can remember driving to work, coming to a stop sign, stopping, and then realizing when I saw someone walk by that stop was not supposed to be a permanent state. I often fogged out during meetings. I had a very hard time communicating, hard to formulate thoughts into paragraphs and verbally convey them to others. I would lose my breadth while talking and on a couple occasions wanted to pass put. At the same time, others did not notice it as much as I did, I interviewed for a job and got it, I pulled together a number of complex stretegies foe the team to get us to some difficult goals.
The firehea can be a nuisance and so can the itch but most can keep these under control.
SOC and Post incivek:
I was happy I did incivek, it only last 12 weeks, you get the worst of it over, then it gets better as you drop down to SOC. You will still need to hydrate. Now I am sometimes mean (RIBA rage) and often just tired but not constantly exhausted like I was on incivek. The hair is thinning. I often feel like I have swallowed a lot of antihistamines and am very anxious but not as bad as incivek again. Sometimes I notice on simple tasks I have a hard time making decisions due to the focus/anxiousness, duh, just do it I would tell myself and push through. Some symptoms cycle through weeks based on your shot timing. I take a shot Friday night, Sunday through Monday are my worse days.
In general:
This will very likely impact your lifestyle. It's only temporary. It is hard, for some it becomes very hard, for most, some days are better than others but good days are relative, you always know you are treating. We get through it. SOC is easier than the weeks with incivek but incivek kicks hep c but, reduces your treatment time and increases SVR significantly from SOC only.
It seems like a cake walk compared to for instance cancer level chemo, alzhiemers, Parkinson's, bone marrow transplants, breast cancer. I still would not recommend it, you do it when and if your time is right. There are people I care for going through MUCH worse so it helps me to keep perspective. I have no space to complain. Taking it day by day, surviving, and will likely reach svr. Counting the weeks to each next milestone helps.
yeah, pooh got most of it covered. No matter how easy or hard you have it, it will pass. Best wishes and we'll be here for you!
Yes, dr has said weekly cbc's also had low white ceel ct before. recovering frm breast cancer. thansk for the info
I just finished tx with Incivik, although I would not say it was fun by any means, I did not need rescue drugs, I did not get the rash. But I did itch from it. I was und at 4, 12, 19 and 24wks. Its very important to do all your lab work (blood tests) when the Dr wants you to, and do what they tell you to the letter if possible. Please dont get freaked out before you get started. you could have very mild side effects. You will also ecounter a lot of abbreviations LOL. You will soon figure them out. Welcome to the forum, I encourage you to ask lots of questions as you go. You may find more info on here than you will at the Dr's office, that seems to be the case a lot. People on here genuinely care for each other as we are all fighting the Dragon together.
good info from pooh...to make tx easier on you i would talk with your doctor about tx...like when your doc brings in rescue drugs...if your blood counts are off...does your doctor plan on weekly cbcs? how low does your hgb go before procrit is brought into tx....at what point do they reduce drugs to keep you on tx...at what point is a transfusion used in tx...get a soft toothbrush and use warm water as your mouth may be sore...do not take hot showers if you itch!!make sure you rinse your cloths real well in water...start drinking water before tx starts to get use to it...get a h2o plastic bottle from walmart..there blue and have a big mouth..makes it easier to get more water down...don't use dryer sheets!! ask your doctor about vitamins..what to take...maybe get on an ad 6 weeks before tx...maybe not...i think its a better time to go on triple tx then in july...a lot of new info out there....read up on the forum...good luck...billy
Welcome to the forum and congratulations on starting treatment (soon).
I suggest you read the literature enclosed with your medications when they come. The literature will tell you which side efects are associated with each particular drug. Also listed are the SEVERE side effects for which you must seek immediate attentionm. This is important to know because, although not common, these meds can cause some severe, even life threatening, side effects in some people. I am not trying to scare you because most people do not have sever side effects. But you need to know when to seek medical attention just in case.
That said, everyone reacts differently to the meds. Some people have few side effects and others have more. Some people have a bunch of minor annoying side effects and others have a few that need to be kept on top of or they get worse.
Many people complain of fatigue, nausea, flu like symptoms (mainly after the Interferon injection), rash and/or itching, headaches, diarrhea, general malaise. Pardon my bluntness, but you may get burning diarrhea (and some have pretty bad internal rectal pain). Incivek seems to cause this flaming diarrhea along with hemorrhoids.
Keep in mind, you won't get all side effects listed and you may get few of them. However, it is good to be prepared with some supplies prior to starting the meds so you do not have to run to the store in the middle of the night for Benadryl or Loperimide.
I suggest having the following items on hand when you start treatment:
Tylenol (I use 325 mg) for headache and general muscle aches
Benadryl caps for the rash and itching
Preparation H suppositories
Preparation H hemorrhoid cream
Loperimide tabs for the diarrhea
Huggies baby wipes with aloe (to keep the buttocks extra clean)
Hydrocortisone cream for the rash
Gel type cold pack (this comes in handy for headaches and itching)
Toilet paper, lots of it, LOL.
Hypoallergenic lotion or very mild unscented lotion
For your injections have sterile alcohol swabs (they are not all sterile so read the package), sterile 2 by 2's, large bandaides.
It might be good to stock up on some other items like juices, soups, saltine crackers for the nausea, easy to prepare food. If you live alone and have a cat or dog, it might be good to stock up on the cat and dog food and also those heavy boxes of litter.
I am sure I am forgetting some things. The best thing is to keep on top of or keep ahead of the symptoms. I think many or most of us take Tylenol when we take our injections. It helps keep the headaches and other aches and flu like symptoms under control. I take 2 when I take the injection and one the next morning. Works pretty well. I also take Benadryl every night. The rash and itching seem to get more noticeable at night when a person gets hotter or skin is touching skin. Keep the room temperature low, 68 or even cooler. The rash and itching blossom when a person gets hot. For the rectal issues, I would recommend getting on top of them at the very first sign of an issue. I found that keeping the stools formed, and not soft or loose, seems to be a key factor in keeping the rectal problems under control. I know that seems counterintuitive when one has hemorrhoids (which Incivek can cause), but take it from one who had some real painful issues, keeping the stool fairly firm is key.
You are on Incivek so you will need to eat 20 grams of fat every time you take that a dose. The following foods have high fat content (read the labels for the exact amount needed to get 20 grams into you):
Greek Yogurt (NOT low fat)
Whipping cream
Peanut butter
1 avocado
Ice cream (NOT low fat)
Olive oil
Butter
Eggnog (but also take something solid with the eggnog, toast or something)
There are several more items high in fat like potato chips, olives, etc. but I cannot remember them because most of them I do not eat.
If you have a problem with a side effect, post on the forum and people will let you know how they dealt with it.
Again, you may be one of the lucky ones and have very few side effects or relatively minor side effects. However, I think it is best to be prepared for them if they do show up.
Best of luck on your treatment.
PS: I finished 12 weeks of Incivek 1 week ago. While it was no picnoc, it was doable and the side effects have been manageable. If I had to do it again to get rid of this virus, I would.
I suggest you read the literature enclosed with your medications when they come. The literature will tell you which side efects are associated with each particular drug. Also listed are the SEVERE side effects for which you must seek immediate attentionm. This is important to know because, although not common, these meds can cause some severe, even life threatening, side effects in some people. I am not trying to scare you because most people do not have sever side effects. But you need to know when to seek medical attention just in case.
That said, everyone reacts differently to the meds. Some people have few side effects and others have more. Some people have a bunch of minor annoying side effects and others have a few that need to be kept on top of or they get worse.
Many people complain of fatigue, nausea, flu like symptoms (mainly after the Interferon injection), rash and/or itching, headaches, diarrhea, general malaise. Pardon my bluntness, but you may get burning diarrhea (and some have pretty bad internal rectal pain). Incivek seems to cause this flaming diarrhea along with hemorrhoids.
Keep in mind, you won't get all side effects listed and you may get few of them. However, it is good to be prepared with some supplies prior to starting the meds so you do not have to run to the store in the middle of the night for Benadryl or Loperimide.
I suggest having the following items on hand when you start treatment:
Tylenol (I use 325 mg) for headache and general muscle aches
Benadryl caps for the rash and itching
Preparation H suppositories
Preparation H hemorrhoid cream
Loperimide tabs for the diarrhea
Huggies baby wipes with aloe (to keep the buttocks extra clean)
Hydrocortisone cream for the rash
Gel type cold pack (this comes in handy for headaches and itching)
Toilet paper, lots of it, LOL.
Hypoallergenic lotion or very mild unscented lotion
For your injections have sterile alcohol swabs (they are not all sterile so read the package), sterile 2 by 2's, large bandaides.
It might be good to stock up on some other items like juices, soups, saltine crackers for the nausea, easy to prepare food. If you live alone and have a cat or dog, it might be good to stock up on the cat and dog food and also those heavy boxes of litter.
I am sure I am forgetting some things. The best thing is to keep on top of or keep ahead of the symptoms. I think many or most of us take Tylenol when we take our injections. It helps keep the headaches and other aches and flu like symptoms under control. I take 2 when I take the injection and one the next morning. Works pretty well. I also take Benadryl every night. The rash and itching seem to get more noticeable at night when a person gets hotter or skin is touching skin. Keep the room temperature low, 68 or even cooler. The rash and itching blossom when a person gets hot. For the rectal issues, I would recommend getting on top of them at the very first sign of an issue. I found that keeping the stools formed, and not soft or loose, seems to be a key factor in keeping the rectal problems under control. I know that seems counterintuitive when one has hemorrhoids (which Incivek can cause), but take it from one who had some real painful issues, keeping the stool fairly firm is key.
You are on Incivek so you will need to eat 20 grams of fat every time you take that a dose. The following foods have high fat content (read the labels for the exact amount needed to get 20 grams into you):
Greek Yogurt (NOT low fat)
Whipping cream
Peanut butter
1 avocado
Ice cream (NOT low fat)
Olive oil
Butter
Eggnog (but also take something solid with the eggnog, toast or something)
There are several more items high in fat like potato chips, olives, etc. but I cannot remember them because most of them I do not eat.
If you have a problem with a side effect, post on the forum and people will let you know how they dealt with it.
Again, you may be one of the lucky ones and have very few side effects or relatively minor side effects. However, I think it is best to be prepared for them if they do show up.
Best of luck on your treatment.
PS: I finished 12 weeks of Incivek 1 week ago. While it was no picnoc, it was doable and the side effects have been manageable. If I had to do it again to get rid of this virus, I would.
The majority of people on this forum currently doing treatment are doing the triple therapy which you refer to.
If you read through recent posts you will come upon the commonest complaints about the various possible side effects.
You can also read about the side effects on the incivek web site:
www.incivek.com
If you read through recent posts you will come upon the commonest complaints about the various possible side effects.
You can also read about the side effects on the incivek web site:
www.incivek.com
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