Aa
Incivek pointers
My wife is on day 11 of the Incivek IF riba TX. She really is not handling it well at all. She has diarrhea daily in the morning, nausea, skin rash (started on day 2) and general malaise and fatigue. Does anyone have any recommendations for what she could do about any of this? If things don't improve soon I don't believe she'll complete her TX.
We were told that it is best to take the Telaprevir with 20g of fat at each dose. It's amazing how hard that is to achieve. And suggestions here?
We were told that it is best to take the Telaprevir with 20g of fat at each dose. It's amazing how hard that is to achieve. And suggestions here?
The triple tx with Incivek IS a lot rougher than the 2-drug treatment was (I've done both). I'm now on week 26 out of 48, but I remember very well that when I was just about where your wife is now I started to have serious doubts as to whether I was going to be able to handle the tx. Talking to people on this forum helped a lot, expressing my fears to my husband (and having my husband pump up the level of love and support) helped a lot, and having my doctor prescribe Zofran for the nausea and steroid cream for the itching also helped a lot. Of course, the very best thing was just getting to the end of the Incivek. Just tell her to hang in there, give her as much love and support as you can, and remind her that it's only the first 12 weeks and she'll feel SO much better after that stage. It really is the best tx available for genotype 1a.
When the treatment is this brutal though, it is even more important to do it all the RIGHT way - if you are going to put yourself through that kind of misery you really don't want to do anything to risk failure. You also need to know that if you stop the Incivek early you can't go back and try again at some other time, as that increases the risk of the virus mutating to a resistant strain. It's a one-time-only kind of deal. Try to help your wife with sticking to a really regular schedule of eating the 20g of fat, then taking the Incivek within 20 minutes, then repeating every 8 hours, and being really faithful to both the fat intake and the schedule. The schedule is hard to stick to, and after the brain fog starts to set in it becomes hard to remember whether you've taken your pills. She needs to create some failsafe system to ensure success. What I found to work was setting daily alarms on my iphone and then being obsessive about keeping it on me at all times. I woke up at 5:30am to be able to take my first pills at 6:00am. (both Incivek and the morning Ribavirin). I've never been a morning person, so I needed my husband's help getting up at first. I had nausea and could only make myself eat drier kinds of fatty foods in the morning, so it was stuff like pastries, cinnamon rolls and high-fat granola for me, but read the labels carefully. I got my morning meds ready the night before so I didn't have to fumble with the packaging while half asleep, and I slept with my phone charging on my nightstand so it would be right there. I kept my phone in my pocket then all day (and only wore clothes with pockets to be sure I was never without it). The next alarm went off at 1:30 so I could take the second dose of Incivek at 2:00pm. This meal was usually the easiest one of the day to get down but she should still try to keep it simple to prepare. Many kinds of dinner menus have enough fat in them, so I made this my main meal of the day. The next alarm was around 5 or 6 pm, for a snack and the second dose of Ribavirin. The timing of this is much more flexible than the Incivek. The final alarm was at 9:30pm to eat a high-fat and nutritious dessert (cheesecake, very high-fat ice cream, or whatever meets the 20g) and take that third dose of Incivek by 10pm. One time I choked down the 20g of fat and then 90 minutes later realized I'd forgotten to take the Incivek. It was excruciating to have to turn around and eat that amount of fat all over again right away - but it was necessary. To make sure it never happened again I put a daily check-off list on my phone and checked off the pills as soon as I took them, then made myself get really obsessive about checking the list to be sure. My husband also got obsessive about asking if I had remembered. It was annoying, but it worked. I spent a lot of time lying on the couch, and I slept a lot whenever my stomach would let me. I didn't feel safe driving in traffic or at high speed so my husband used family leave time to drive me in for labs and doctor appointments. During the second week the nausea got bad enough that I started vomiting. It's not good to vomit up the pills, so from then on I had to take Zofran for nausea every morning. It worked like a charm, and although it is only supposed to last 8 hours, I only rarely needed to take more than one dose per day. I was lucky in that I never experienced any anal or rectal burning like some do. I did bounce back and forth between diarrhea and constipation, but I just coped with it as best I could. Compared to the nausea/vomiting, it was less of a problem. BTW, some people have mentioned other drugs for nausea, but my doctor told me clearly that phenergan and compazine should not be taken with Incivek, only Zofran.
Tell your wife that there is a whole community of people here on this site who will be rooting for her to make it, and tell her we are all happy to answer questions or just listen.
Best wishes,
Saelon
When the treatment is this brutal though, it is even more important to do it all the RIGHT way - if you are going to put yourself through that kind of misery you really don't want to do anything to risk failure. You also need to know that if you stop the Incivek early you can't go back and try again at some other time, as that increases the risk of the virus mutating to a resistant strain. It's a one-time-only kind of deal. Try to help your wife with sticking to a really regular schedule of eating the 20g of fat, then taking the Incivek within 20 minutes, then repeating every 8 hours, and being really faithful to both the fat intake and the schedule. The schedule is hard to stick to, and after the brain fog starts to set in it becomes hard to remember whether you've taken your pills. She needs to create some failsafe system to ensure success. What I found to work was setting daily alarms on my iphone and then being obsessive about keeping it on me at all times. I woke up at 5:30am to be able to take my first pills at 6:00am. (both Incivek and the morning Ribavirin). I've never been a morning person, so I needed my husband's help getting up at first. I had nausea and could only make myself eat drier kinds of fatty foods in the morning, so it was stuff like pastries, cinnamon rolls and high-fat granola for me, but read the labels carefully. I got my morning meds ready the night before so I didn't have to fumble with the packaging while half asleep, and I slept with my phone charging on my nightstand so it would be right there. I kept my phone in my pocket then all day (and only wore clothes with pockets to be sure I was never without it). The next alarm went off at 1:30 so I could take the second dose of Incivek at 2:00pm. This meal was usually the easiest one of the day to get down but she should still try to keep it simple to prepare. Many kinds of dinner menus have enough fat in them, so I made this my main meal of the day. The next alarm was around 5 or 6 pm, for a snack and the second dose of Ribavirin. The timing of this is much more flexible than the Incivek. The final alarm was at 9:30pm to eat a high-fat and nutritious dessert (cheesecake, very high-fat ice cream, or whatever meets the 20g) and take that third dose of Incivek by 10pm. One time I choked down the 20g of fat and then 90 minutes later realized I'd forgotten to take the Incivek. It was excruciating to have to turn around and eat that amount of fat all over again right away - but it was necessary. To make sure it never happened again I put a daily check-off list on my phone and checked off the pills as soon as I took them, then made myself get really obsessive about checking the list to be sure. My husband also got obsessive about asking if I had remembered. It was annoying, but it worked. I spent a lot of time lying on the couch, and I slept a lot whenever my stomach would let me. I didn't feel safe driving in traffic or at high speed so my husband used family leave time to drive me in for labs and doctor appointments. During the second week the nausea got bad enough that I started vomiting. It's not good to vomit up the pills, so from then on I had to take Zofran for nausea every morning. It worked like a charm, and although it is only supposed to last 8 hours, I only rarely needed to take more than one dose per day. I was lucky in that I never experienced any anal or rectal burning like some do. I did bounce back and forth between diarrhea and constipation, but I just coped with it as best I could. Compared to the nausea/vomiting, it was less of a problem. BTW, some people have mentioned other drugs for nausea, but my doctor told me clearly that phenergan and compazine should not be taken with Incivek, only Zofran.
Tell your wife that there is a whole community of people here on this site who will be rooting for her to make it, and tell her we are all happy to answer questions or just listen.
Best wishes,
Saelon
Mmmm, Kefir is yummy, thanks for the reminder. And the whole milk one has the fat calories. In the beginning of my treatment, when my stomach was upset, I tended to avoid veggies, and stuck mainly to fruit. But now, it seems like my stomach has adjusted, and I'm eating the veggies now. In the beginning of treatment, I stuck to bland foods, I fed myself like I would feed a baby~
Yes a bidet would be nice. LOL. And you are also right about bulk. I left that out, plenty of fruits and veggies too. I also drink Kefir and eat greek yogurt
Oh, and pizza is SO constipating, and has alot of fat, as well...plus, it's comfort food : )
I'm triple tx with the Victrelis, but I always feel like the Incivek crew have it the worst, because they start right in, with all three meds, where-as, with the Victrelis, there is a 4 week lead in, but then again, we have to be on the PI longer. But I just cant imagine having a rash and the runs, it seems like torture to me. My bad sx is RLY bad tasting teeth, which is not as painful physically, but affects me psychologically.
I'm triple tx with the Victrelis, but I always feel like the Incivek crew have it the worst, because they start right in, with all three meds, where-as, with the Victrelis, there is a 4 week lead in, but then again, we have to be on the PI longer. But I just cant imagine having a rash and the runs, it seems like torture to me. My bad sx is RLY bad tasting teeth, which is not as painful physically, but affects me psychologically.
I wish America had Bidets, that way the whole wiping the sore butt with t.p. could be avoided. I do use a handy dandy Mr. Shower, after I go poop, just to avoid the irritation issue.
Someone mentioned Oatmeal bath, and maybe eating oatmeal may help also, she could add some butter, for the fat. I just remember my Doctor saying "adding bulk" helps the runnies, and oatmeal seems bulky~
Someone mentioned Oatmeal bath, and maybe eating oatmeal may help also, she could add some butter, for the fat. I just remember my Doctor saying "adding bulk" helps the runnies, and oatmeal seems bulky~
Any pointers for going off of Incivek. I have three weeks left for that. I hear that just stopping the fat is not good, but anything else would be greatly appreciated.
I would offer this bit of advice on the 'roid issue. Buy those Prep H wipes and use them every single time. Forget using toilet paper at all - never use anything but the wipes.
Hi, my opinion is that it is important to be very regular with meals so as to avoid irregularity in your bm's. eat as healthfully as you can, fruit veggies, etc, then go hog wild with anything you can force down to get your 20g of fat.
The premium ice creams are what I would fall back on, although I did lose my taste for Hagen Daaz strawberry. But I've been off the Incivek a little over 2 weeks- I'm in week 15 of 24 if all keeps going like it has been.
The premium ice creams are what I would fall back on, although I did lose my taste for Hagen Daaz strawberry. But I've been off the Incivek a little over 2 weeks- I'm in week 15 of 24 if all keeps going like it has been.
I forgot, tepid oatmeal baths before the lotion helps alot, and some have gotten prescriptions.
I am sorry she is not doing well. You got lots of good advice already, but is she drinking lots of water and getting mild exercise like short walks? I found that olive oil on wet skin after shower worked farly well for the rash, as well as eucerin calming cream. The rash will go away, I got it 3 days after starting treatment. Once it does go away she has to keep up with the skin cream. I also got a humidifier. I take zofran for severe nausea and ginger ale does help for mild, as well as sea bands (they do work for milder nausea).. The fat thing, you just need to get creative. I got anorexia the first 6 weeks of treatment so the fat fests were especially terrible, so trust me I got very creative. I went to the store and just looked around for the smallest. lightest things that supplied enough fat healthy or not. Someone very wise turned me onto UDOS chocolate truffles; they are so so good for you and 1 little square has 7.7 grams of fat. Lately I have been making garlic bread with real butter and italian blend cheese, mini BLT sandwiches, heavy on the mayo. I will add real cream to my kefir or greek yogurt, avacodo makes a nice addition. I do all sorts of combinations of foods to get the 20 grams. I did not have such a problem with the diarrea so can't comment on that, but for hemmeroids (raging butt syndrome) my Dr gave me 2% hydrocortizone. Side effects come and go, and can be mild or severe, many can be treated, bug her Dr. They will get overwhelming, especially at first. One thing that will happen and has to happen is anemia, I do take B complex with 2400 ug B12 and 800ug folic acid, as well as Vitamin E 400 IU 2x a day. I am anemic but stable.Did I stress enough on the importance of lots of water? especially on shot day; I also.drink coconut water (not milk) about an hour before my interferon. I hope she hangs in there because things do get better with time for many, side effects seem to level out, my anorexia is gone so the fat thing is more tolerable, my liver symptoms are disappearing, I was UND at week 4. Greatest feeling in the world! Again, good luck to you both.
I can't top the excellent advice and pointers that have been mentioned but I wanted to encourage you and your wife to hang in there. I hope things improve once you adopt some of the suggestions that have been mentioned. Your support and keeping her spirits up is so sweet. I hope she feels better to the point where she can come on line and interact with us.
I like how you pointed out the part of accepting it was your lost year and big projects were not getting done.
I at first had a hard Time with this because I am a complete neat freak and health nut. It was a hit when I realized my house was trashed and I had to sit and just look at it. Same when the weight started coming on. As you said, when you just accepted things they got so much better. If my liver could talk I bet it would have have yelled at me for being worried about dishes and 15 pounds in the whole scheme of things.
I at first had a hard Time with this because I am a complete neat freak and health nut. It was a hit when I realized my house was trashed and I had to sit and just look at it. Same when the weight started coming on. As you said, when you just accepted things they got so much better. If my liver could talk I bet it would have have yelled at me for being worried about dishes and 15 pounds in the whole scheme of things.
I just read your other post:
If she is feeling faint, it could be dehydration or electrolyte imbalance or low hemoglobin. Hopefully they are checking her blood counts often, at least every two weeks and more often if necessary. The hemoglobin can drop rapidlyu. But the diarrhea can cause dehydration and electrolyte imbalance so she really needs to get that diarrhea under control and drink extra fluids, maybe some Gatorade which I think has extra electrolytes in it.
I am 100% sure she will feel better once those side effects are under contro.
If she is feeling faint, it could be dehydration or electrolyte imbalance or low hemoglobin. Hopefully they are checking her blood counts often, at least every two weeks and more often if necessary. The hemoglobin can drop rapidlyu. But the diarrhea can cause dehydration and electrolyte imbalance so she really needs to get that diarrhea under control and drink extra fluids, maybe some Gatorade which I think has extra electrolytes in it.
I am 100% sure she will feel better once those side effects are under contro.
I am sorry your wife is having so many problems, but it sounds like the worst ones are treatable and can be resolved.
The diarrhea (and even soft stools) can be a big problem but she will feel much better (and so will her butt) if she can firm up those stools, quite form, not like rocks, but really quite firm. I took Loperimide (Immodium) as needed. Once I got them under control, I did not need it every day, but at the second I got a soft or loose stooll I took it. Loperimide is over the counter.
For the nausea I took Zofran. I took and still take Zofran 8 mg every 8 hours. It works miracles (for me anyway) and the nausea is under control. I had gotten to the point where I could barely eat anything and the nausea snowballed into other problems. I should have been on Zofran from about week 2 but I did not know anything then, lol. Ask the doctor for a prescription for Zofran every 8 hours (get a high enough dose) and then take it on schedule every 8 hours. It works best if taken before one gets nauseated and then it prevents the nausea. But it wil also work if one is already nauseated. I think getting the nausea under control is imperative. Not only will she be able to eat, but she will also feel better physiologically.
Hopefully the doc will order the med, but you may have to be insistant, I had to be quite insistant.
You don't say how bad her skin rash is and if she is itching. If she has a rash taht is more than a few bumps and/or she has itching that problem needs to be delat with. The rash can really snowball and get worse rapidly. Over the counter hydrocortizone cream and benadryl did nothing for me. I had to get prescriptions for fluocinonide ointment (there is a cream also), hydroxyzine tabs, and clobetosol soln. The fluocinonide oint. would eventually clear up an area (anfter a couple of weeks) but then the rash just moved next door. The hydroxyzine is what really did the trick but it has to be a high enough dose. My starting dose was way too low. I am now on Hydroxyzine 25 to 50 mg. every 6 hours. I feel like a new woman. It is amazing how much the rash and itching and that extra histamine was affecting me systemically and physiologically, in many more ways than the actual rash and the itching. I also do a few other things to help:
*Keep the house cool, 66-68 degrees, especially the bedroom.
*Wear light cotton clothing with no tags and no scratchy material and it should be loose, not tight.
*Avoid any unnecessary clothing. Sounds wierd, but the clothing rubbing on the skin will get the itching and rash activated. I mostly wore a very light short cotton nightgown during the day because it did not cause itching. Pants and bras and tops and sox rubbed too much and made me itch.(I can wear clothing again now that I am on the right dose of hydroxyzine.)
*Sleep on soft cotton sheets with very light weight covers
*A fan in the bedroom helps to cool (I keep it on all night and stick my feet and legs out if they get hot)
*Use unscented and/or hypoallergenic lotion, deoderant, laundry soap, dish soap, hand soap, etc.
*Shower with cooler showers, not real hot.
*Avoid the heat (ie nice warm sunny days outside, forget it, lol, she will start itching). Really what it boils down to is to avoid getting hot. I can tell right away if the room is getting too warm ... I start itching, even on the hydroxyzine.
*Some people do oatmeal baths or use oatmeal lotion. I think these might work if the rash is minimal but if she has a systemic rash she will probably need prescription drugs. Besides, if the itching is bad and it is aggravating and also keeping her awake, it may get to be too much to tolerate. *Personally, I would go for a precription that works, like the meds I mentioned, and of those, I think the hydroxyzine (same as atarax) is the most beneficial because it is systemic and actually blocks the histamine. However, having a steroid ointment will help locally with itching and to clear it up.
20 grams of fat is definitely a lot of fat. Here are some things that worked for me:
*Greek Gods yogurt (whole, not low fat) It has way more fat than regular yogurt
*2 ounces of cheddar or Havarti cheese
*cream cheese or soft Brie cheese (check label for amount)
*liver pate - sounds awful, but I got it at the whole foods store and it was healthy and it has a lot of fat in it
*Bratwurst (I think one or two, not sure of the number)
*Peanut butter (2 Tablespoons I think) A sliced apple with some peanut butter on each slice is tasty
*Toast with lots of butter on it (this is not enough fat but it can help with other foods to make up 20 grams of fat)
*Sandwich with butter and mayonaise on it (has to be enough for 20 grams)
*Heavy whipping cream (this I added to all sorts of things to increase the amount of fat, and if I thought I was short, I ate a few tablespoons of fat the whipping cream
*Ice cream (whole, not low fat)
*Eggnog
*Nuts
*1 medium avavocado
She needs to eat some solid food with the more liquid food so she gets a little bulk in her stomach. So 2 ounces of cheddar cheese and some toast, a Greek yogurt smoothie and some toast, a smoothie and an egg or two etc.
I used to eat chicken soup and saltimes and then add something with 20 grams of fat like berries with a lot of heavy whipping cream on them. You have to get a little creative because food is not going to taste the same as it does normally. Sometimes nothing was appealing. Another thing I did was add some condiments to the plate to make food taste like something besides cardboard. I would have meat and add a bunch of greek olives or herbed olives or pickled beets or plain pickles as a side to help get the meat down. It worked.
Here is a thread with many food suggestions. Scroll down towards the bottom to a very long post by mecheng and you will see tons of foods with high fat content:
http://www.medhelp.org/posts/Hepatitis-C/Are-these-fats-okay/show/1694773
There is not a lot she can do about the malaise and fatigue although I found they lessened considerably once I had the nausea and the rash under control. I think adjusting one's expectations does help. Try to do something productive each day. It does not have to be cleaning the whole house, but maybe just doing the dishes or sweeping one room, or cleaning the toilet, etc. (I live alone so I had to do that stuff or it would not get done.) A short walk outside would be good. Take it slow. Rest as needed in between activities. Do not plan all sorts of activities in advance. Forget events for the evening ... that is recliner time. Try to get some sleep (which is difficult on the every 8 hour fat feed and pill taking). Try to adjust to not getting major projects done. Just accept that the stamina and the concentration and the motivation is just not there during treatment. I used to get frustrated because I was getting nothing constructive done. I could not work on my projects. I could not focus or concentrate. I could not read a book. I finally accepted that this is my lost year in terms of doing big projects and now I don't get frustrated or upset. I just go with the flow. However, it is helpful to find some constructive things that she can do: get audio books from the library, get DVDs (I have some educational DVDs that I watch), sort some things like photos or drawers, etc.
She will most likely feel much better after she is off Incivek.
I think the most important thing is to get those side effects under control It will mean the difference between a miserable treatment and a doable treatment.
I hope she can get things under control so she can continue treatment. I hope she feels better soon.
The diarrhea (and even soft stools) can be a big problem but she will feel much better (and so will her butt) if she can firm up those stools, quite form, not like rocks, but really quite firm. I took Loperimide (Immodium) as needed. Once I got them under control, I did not need it every day, but at the second I got a soft or loose stooll I took it. Loperimide is over the counter.
For the nausea I took Zofran. I took and still take Zofran 8 mg every 8 hours. It works miracles (for me anyway) and the nausea is under control. I had gotten to the point where I could barely eat anything and the nausea snowballed into other problems. I should have been on Zofran from about week 2 but I did not know anything then, lol. Ask the doctor for a prescription for Zofran every 8 hours (get a high enough dose) and then take it on schedule every 8 hours. It works best if taken before one gets nauseated and then it prevents the nausea. But it wil also work if one is already nauseated. I think getting the nausea under control is imperative. Not only will she be able to eat, but she will also feel better physiologically.
Hopefully the doc will order the med, but you may have to be insistant, I had to be quite insistant.
You don't say how bad her skin rash is and if she is itching. If she has a rash taht is more than a few bumps and/or she has itching that problem needs to be delat with. The rash can really snowball and get worse rapidly. Over the counter hydrocortizone cream and benadryl did nothing for me. I had to get prescriptions for fluocinonide ointment (there is a cream also), hydroxyzine tabs, and clobetosol soln. The fluocinonide oint. would eventually clear up an area (anfter a couple of weeks) but then the rash just moved next door. The hydroxyzine is what really did the trick but it has to be a high enough dose. My starting dose was way too low. I am now on Hydroxyzine 25 to 50 mg. every 6 hours. I feel like a new woman. It is amazing how much the rash and itching and that extra histamine was affecting me systemically and physiologically, in many more ways than the actual rash and the itching. I also do a few other things to help:
*Keep the house cool, 66-68 degrees, especially the bedroom.
*Wear light cotton clothing with no tags and no scratchy material and it should be loose, not tight.
*Avoid any unnecessary clothing. Sounds wierd, but the clothing rubbing on the skin will get the itching and rash activated. I mostly wore a very light short cotton nightgown during the day because it did not cause itching. Pants and bras and tops and sox rubbed too much and made me itch.(I can wear clothing again now that I am on the right dose of hydroxyzine.)
*Sleep on soft cotton sheets with very light weight covers
*A fan in the bedroom helps to cool (I keep it on all night and stick my feet and legs out if they get hot)
*Use unscented and/or hypoallergenic lotion, deoderant, laundry soap, dish soap, hand soap, etc.
*Shower with cooler showers, not real hot.
*Avoid the heat (ie nice warm sunny days outside, forget it, lol, she will start itching). Really what it boils down to is to avoid getting hot. I can tell right away if the room is getting too warm ... I start itching, even on the hydroxyzine.
*Some people do oatmeal baths or use oatmeal lotion. I think these might work if the rash is minimal but if she has a systemic rash she will probably need prescription drugs. Besides, if the itching is bad and it is aggravating and also keeping her awake, it may get to be too much to tolerate. *Personally, I would go for a precription that works, like the meds I mentioned, and of those, I think the hydroxyzine (same as atarax) is the most beneficial because it is systemic and actually blocks the histamine. However, having a steroid ointment will help locally with itching and to clear it up.
20 grams of fat is definitely a lot of fat. Here are some things that worked for me:
*Greek Gods yogurt (whole, not low fat) It has way more fat than regular yogurt
*2 ounces of cheddar or Havarti cheese
*cream cheese or soft Brie cheese (check label for amount)
*liver pate - sounds awful, but I got it at the whole foods store and it was healthy and it has a lot of fat in it
*Bratwurst (I think one or two, not sure of the number)
*Peanut butter (2 Tablespoons I think) A sliced apple with some peanut butter on each slice is tasty
*Toast with lots of butter on it (this is not enough fat but it can help with other foods to make up 20 grams of fat)
*Sandwich with butter and mayonaise on it (has to be enough for 20 grams)
*Heavy whipping cream (this I added to all sorts of things to increase the amount of fat, and if I thought I was short, I ate a few tablespoons of fat the whipping cream
*Ice cream (whole, not low fat)
*Eggnog
*Nuts
*1 medium avavocado
She needs to eat some solid food with the more liquid food so she gets a little bulk in her stomach. So 2 ounces of cheddar cheese and some toast, a Greek yogurt smoothie and some toast, a smoothie and an egg or two etc.
I used to eat chicken soup and saltimes and then add something with 20 grams of fat like berries with a lot of heavy whipping cream on them. You have to get a little creative because food is not going to taste the same as it does normally. Sometimes nothing was appealing. Another thing I did was add some condiments to the plate to make food taste like something besides cardboard. I would have meat and add a bunch of greek olives or herbed olives or pickled beets or plain pickles as a side to help get the meat down. It worked.
Here is a thread with many food suggestions. Scroll down towards the bottom to a very long post by mecheng and you will see tons of foods with high fat content:
http://www.medhelp.org/posts/Hepatitis-C/Are-these-fats-okay/show/1694773
There is not a lot she can do about the malaise and fatigue although I found they lessened considerably once I had the nausea and the rash under control. I think adjusting one's expectations does help. Try to do something productive each day. It does not have to be cleaning the whole house, but maybe just doing the dishes or sweeping one room, or cleaning the toilet, etc. (I live alone so I had to do that stuff or it would not get done.) A short walk outside would be good. Take it slow. Rest as needed in between activities. Do not plan all sorts of activities in advance. Forget events for the evening ... that is recliner time. Try to get some sleep (which is difficult on the every 8 hour fat feed and pill taking). Try to adjust to not getting major projects done. Just accept that the stamina and the concentration and the motivation is just not there during treatment. I used to get frustrated because I was getting nothing constructive done. I could not work on my projects. I could not focus or concentrate. I could not read a book. I finally accepted that this is my lost year in terms of doing big projects and now I don't get frustrated or upset. I just go with the flow. However, it is helpful to find some constructive things that she can do: get audio books from the library, get DVDs (I have some educational DVDs that I watch), sort some things like photos or drawers, etc.
She will most likely feel much better after she is off Incivek.
I think the most important thing is to get those side effects under control It will mean the difference between a miserable treatment and a doable treatment.
I hope she can get things under control so she can continue treatment. I hope she feels better soon.
I ate my fair share of Jimmy Dean sausages in the morning too. I liked the little links - 3 of them- on half a piece of bread with mustard. Even that got to much to do by week 7 or 8.
@chuckles333 - Incivek is one tough drug. I honestly had no idea how bad some of the side effects would be! Make sure you and she are monitoring her labs each week to watch out for the anemia. It can get to be pretty low pretty quick. I really think if she gets her nausea and diarrhea under control she will be feeling better soon.
Getting off the Incivek (and the UND) has been the highlight of my treatment.
@chuckles333 - Incivek is one tough drug. I honestly had no idea how bad some of the side effects would be! Make sure you and she are monitoring her labs each week to watch out for the anemia. It can get to be pretty low pretty quick. I really think if she gets her nausea and diarrhea under control she will be feeling better soon.
Getting off the Incivek (and the UND) has been the highlight of my treatment.
You beat me to the brat girl! :)
*oh and Jimmy swans should say Jimmy Dean. lol I don't know who Jimmy swans is.
*oh and Jimmy swans should say Jimmy Dean. lol I don't know who Jimmy swans is.
I really appreciate all of the good tips and advice and well wishes. It's been difficult for her from day one. I went through the double TX about three years ago. I was type 2b and my wife is a type1a. My treatment was really quite easy compared to most. My wife is just the opposite. I'm hoping once the Incivek is out of the mix things will improve for her. I just spoke with her (I'm at work) and she said she has the poops again but no nausea. She's been feeling quite faint though. I hope things improve for her.
I'm sorry she is having such a rough time. :( As Billy said, some people have it easier then others. Unfortunately I am one of those people that have had many sides of the drugs. After my first 10 days I was uncertain if I would get through....but after doing one day at a Time and dealing with each side as it came, I find myself within the last few weeks of incivek and have been Und since week 4 or before.
Have you mentioned this site to her? It really has been keeping me more sane.
My diarrhea got better after 4 weeks as well. In my third week I lived in the bath tub. plain warm water was the only thing that soothed the rectal itch . After getting out of the tub I had to use a suppository for the inside and cream on the outside. This will get on clothing so a pad I would recommend . I started. a brat diet to firm stools. bananas.rice.Apple sauce.toast . make all rice and toast white. Within one week I was out of the bath tub . Since then, the diarrhea comes and goes. I still put the cream on as a preventive and have it I start to itch again. Getting through these first 12 weeks. of tx. is very important. The diarrhea should get better after.
For the fat I get Ben and Jerry for my night feeding, it's easier then eating a bunch of solids and trying to go to bed. For breakfast I got Jimmy swans breakfast sandwiches, donuts or honey buns with a glass of whole milk ,or bagels or toast and butter. I think I'm going to switch that to Ben and Jerrys too because now I'm having problems with nausea and the morning is worse for me. I eat a lot of cheese, peperoni, chocolates and ruffles. chips. Seem. to have the most fat chip wise.
I did have to get zofran for nausea after 4 weeks.
Like Billy I tanked week 8 and had an hgb of 8.1 and got a transfusion which has made me feel better. I'm hoping to keep my level stable until I'm off. the. incivek. For headaches I take ibuprofen as needed..ice pack on head for headache or on my eyes if they are in pain a cold compress.
I got the rash 4 days in and immediately put prescription fluocinonide cream on and within two weeks it was gone and has not returned. I do have all over itch and dry skin which I have used eucerin cream and benedryl. for . The benedryl makes me tired so I take it at bed Time to help me sleep. Been okay depression wise...if I need to cry I do. I take my shot on Friday and have found my most depressed day is Sunday, so I'm ready for it.
I hope some of this has helped..I really wish you all the best:)
:) Laura
Have you mentioned this site to her? It really has been keeping me more sane.
My diarrhea got better after 4 weeks as well. In my third week I lived in the bath tub. plain warm water was the only thing that soothed the rectal itch . After getting out of the tub I had to use a suppository for the inside and cream on the outside. This will get on clothing so a pad I would recommend . I started. a brat diet to firm stools. bananas.rice.Apple sauce.toast . make all rice and toast white. Within one week I was out of the bath tub . Since then, the diarrhea comes and goes. I still put the cream on as a preventive and have it I start to itch again. Getting through these first 12 weeks. of tx. is very important. The diarrhea should get better after.
For the fat I get Ben and Jerry for my night feeding, it's easier then eating a bunch of solids and trying to go to bed. For breakfast I got Jimmy swans breakfast sandwiches, donuts or honey buns with a glass of whole milk ,or bagels or toast and butter. I think I'm going to switch that to Ben and Jerrys too because now I'm having problems with nausea and the morning is worse for me. I eat a lot of cheese, peperoni, chocolates and ruffles. chips. Seem. to have the most fat chip wise.
I did have to get zofran for nausea after 4 weeks.
Like Billy I tanked week 8 and had an hgb of 8.1 and got a transfusion which has made me feel better. I'm hoping to keep my level stable until I'm off. the. incivek. For headaches I take ibuprofen as needed..ice pack on head for headache or on my eyes if they are in pain a cold compress.
I got the rash 4 days in and immediately put prescription fluocinonide cream on and within two weeks it was gone and has not returned. I do have all over itch and dry skin which I have used eucerin cream and benedryl. for . The benedryl makes me tired so I take it at bed Time to help me sleep. Been okay depression wise...if I need to cry I do. I take my shot on Friday and have found my most depressed day is Sunday, so I'm ready for it.
I hope some of this has helped..I really wish you all the best:)
:) Laura
Sorry to hear about your wife's problems~ I am on the other PI, Victrelis, so I havent had the stomach upset, but I hate getting diarrhea, and with the Incivek, it could lead to more problems, like hemmoroids, etc, so that sounds bad. I have read that avoiding dairy products, and eating constipating food, will help resolve that issue, but then again, she is having to do the 20 grams of fat, so that is difficult. These are foods that are good for "the runs"~
bananas, white rice, apple sauce, toast.
Maybe a grilled cheese sandwhich might be good, to bulk up with, and grilling it, with butter, and the cheese, can bring in some good fat calories.
Many people here have had that rash, and there has been suggestions for that, like anti-itch pills, etc~ hopefully they will come by and post what they took, it just sounds so hard for her to take, but she should try to stick out the trreatment, because the Incivek is only for 12 weeks, and after that, it will get easier, with just the Inf shot, and the Riba~
bananas, white rice, apple sauce, toast.
Maybe a grilled cheese sandwhich might be good, to bulk up with, and grilling it, with butter, and the cheese, can bring in some good fat calories.
Many people here have had that rash, and there has been suggestions for that, like anti-itch pills, etc~ hopefully they will come by and post what they took, it just sounds so hard for her to take, but she should try to stick out the trreatment, because the Incivek is only for 12 weeks, and after that, it will get easier, with just the Inf shot, and the Riba~
i had awful symptoms during tx...some people just do...you have to keep looking at the goal of getting through tx...make sure you do cbcs every week...keep an eye on the blood work...make sure to talk with your doctor about what point he/she will bring in rescue drugs ...the symptoms during tx can change a lot...my hgb tanked and i had a very tough time with it...now it seems for folks on triple once they und you can really cut down the riba... i think the trick is to try to take as much of the drugs as possible...bad symptoms isn't always a bad thing...those drugs are doing their thing...drink lots of water...do not miss a dose of incivek....hopefully you have a pill organizer....my yellow poop and burning wasn't bad after week 4...when your hgb first tanks its awful...my hgb stayed mostly in the 8s during tx..it got much easier to tolerate after the incivek is over...the rashes...take cold showers...clean bedding and cloths with water...and no dryer sheets...take vitamin d3 and maybe b......stay out of the sun....i ate ice cream at first then went to anything with butter on it...like bread...pancakes...anything...2 tablespoons of butter is 22 grams of fat....the fat is very important! keep up on that...the rash never went away for me...in fact 5 months post tx i still am breaking out..but not too bad...stay on the forum and ask questions...that will help you out a lot...tx can be tough but worth it when you kill the virus.....also this is my opinion...get all the input you can from everyone here and weigh it out....good luck......billy
im on week 11 tomorrow. the tx was and continues to be difficult. before tx i was a health nut. jogged, walked, excersized every day. ate nothing but healthy organic foods. tx is not me i did what i had to to make it as easy as i could. i eat so much junk food now just to not have to think about my fat intake. aveeno liquid soap in cold showers for the rash. a;long with 50mg of beneydryhl every 4 hours. i am soooo lucky that i dont have to worry about work cause if i did i would surely have lost my job. also my wife is so very helpfull to me. dont feel like you need to be up and productive, if you feel the need to take it easy do it. ive been on the couch now for 3 months. just keep in mind the big payoff at the end.... your life.
Oh, and for the nausea.....there are many things the doctor can prescribe. Phenergan, compazine (which I took before every meal) and/or Zofran.
If she can get her side effects under control, she will be feeling much better.
If she can get her side effects under control, she will be feeling much better.
I am so sorry your wife is struggling with the Incivek!
According to Vertex it is essential to take the Incivek at regular eight hour intervals with 20 grams of far.
"Patients should be advised that the dose of INCIVEK must not be reduced or interrupted, as it may increase the possibility of treatment failure.
The recommended dose of INCIVEK tablets is 750 mg (two 375-mg tablets) taken orally 3 times a day (7-9 hours apart) with food containing approximately20 grams of fat. Patients should be advised that the fat content of the meal or snack is critical for the absorption of telaprevir. Food that is taken with INCIVEK should be ingested within 30 minutes prior to each INCIVEK dose. Examples of some foods that could be taken with INCIVEK include: a bagel
with cream cheese, ½ cup nuts, 3 tablespoons peanut butter, 1 cup ice cream, 2 ounces American or cheddar cheese, 2 ounces potato chips, or ½ cup trail mix."
I also would eat pimiento cheese with celery sticks! Smoothies made with whole milk Greek yogurt, druit, and protein powder, milkshakes. For my 2pm dose, which is when I would eat my regular lunch, I would either it McDonalds (fish sandwich or double cheeseburger) or Subway (6" BMT with mayo and oil). I believe the expression is 'eating dirty', in other words, fast fatty food. I would try to vary what I ate, because you can get tired of eating the same things over and over.
For the diarrhea, I would suggest getting some Imodium to see if that will help firm up her stools. Eating a lot of cheese should help as well. I found, with me, that the diarrhea seemed to resolve itself by the third or fourth week. Although never quite 'normal' it did get better.
For the skin rash, watch it very closely. Her doctor should stay on top of that. She could start with over the counter hydrocortisone, but I would also suggest getting a prescription for fluocinide, which is a little stronger. I also have a prescription for atarax for the itching. Cool compresses also help with the itching.
The general malaise and fatigue can only be dealt with by sleeping and resting. A short daily walk might help with that as well.
I wish her the best of luck and hope she will be able to complete her treatment. Getting that news of UND is one of the best feelings in the world!
According to Vertex it is essential to take the Incivek at regular eight hour intervals with 20 grams of far.
"Patients should be advised that the dose of INCIVEK must not be reduced or interrupted, as it may increase the possibility of treatment failure.
The recommended dose of INCIVEK tablets is 750 mg (two 375-mg tablets) taken orally 3 times a day (7-9 hours apart) with food containing approximately20 grams of fat. Patients should be advised that the fat content of the meal or snack is critical for the absorption of telaprevir. Food that is taken with INCIVEK should be ingested within 30 minutes prior to each INCIVEK dose. Examples of some foods that could be taken with INCIVEK include: a bagel
with cream cheese, ½ cup nuts, 3 tablespoons peanut butter, 1 cup ice cream, 2 ounces American or cheddar cheese, 2 ounces potato chips, or ½ cup trail mix."
I also would eat pimiento cheese with celery sticks! Smoothies made with whole milk Greek yogurt, druit, and protein powder, milkshakes. For my 2pm dose, which is when I would eat my regular lunch, I would either it McDonalds (fish sandwich or double cheeseburger) or Subway (6" BMT with mayo and oil). I believe the expression is 'eating dirty', in other words, fast fatty food. I would try to vary what I ate, because you can get tired of eating the same things over and over.
For the diarrhea, I would suggest getting some Imodium to see if that will help firm up her stools. Eating a lot of cheese should help as well. I found, with me, that the diarrhea seemed to resolve itself by the third or fourth week. Although never quite 'normal' it did get better.
For the skin rash, watch it very closely. Her doctor should stay on top of that. She could start with over the counter hydrocortisone, but I would also suggest getting a prescription for fluocinide, which is a little stronger. I also have a prescription for atarax for the itching. Cool compresses also help with the itching.
The general malaise and fatigue can only be dealt with by sleeping and resting. A short daily walk might help with that as well.
I wish her the best of luck and hope she will be able to complete her treatment. Getting that news of UND is one of the best feelings in the world!
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