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Avatar universal

My dad

My dad has recently started Incivek, and getting him to eat ANYTHING is about impossible!!! He has worked for 20 or more years to be heart healthy, since he has already had a bypass and recently he got a pace maker/defibrillator put in. Now he started this new medicine and he has to eat things WAY off his norm. He doesn't like cream cheese, nuts, or any simple little fix! We were just discussing making like a chocolate milk shake, but how big will we have to make one? Any help on this is greatly appreciated!!!
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Avatar universal
My husband just finished the full 26 weeks of treatment - awaiting the 4 wk retest to make sure he is still UD.  He said this was the worst medicine that he has ever taken...but will be worth it if it worked.  (He was UD at 4 wks)  He had a terrible time eating the 20 grams of fat three times a day.  However, I found that 1/2 Cup of Costco Vanilla ice cream had 19 grams of fat.....even only 1/2 cup was hard for him to swallow sometime...but he toughed it out.  Once off the Incivek..he started feeling much better in 3 weeks...Every day is better - hang in there...if it kills it - you will be so happy.
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Avatar universal
thanks so much for the encouragement. I'm on my first week, do it get better or worse as time passes?  I too have had open heart surgery and I have a beautiful family and young grand kids I want to live to see.  I live alone and it's hard trying to figure out what to eat.  Do you put on a lot of weight?  Can you exercise lightly?
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Avatar universal
Lets put it this way I learned the hard way he will figure it out if you dont drink Fluids and you dont eat you feel 50 times WORSE when I started pumping down the water eatting before pills and a snack in between I felt a lot better then when I didnt .  No one wants to eat on this treatment but you have to if you dont want to be deathly ill.  Your body is in shock the first 8 weeks he will learn that if he does it his way it wont work.  He can do this and he will feel better sweetie keep supporting him and set a bottle of water by him every couple hours you can be his cheer leading but he needs to make the decision to do it.
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1840891 tn?1431547793
He's a big boy, and I'm sure he can make rational decisions, so just make sure he realizes that the Incivek dose is critical to success with the triple tx, and that taking it within 30 minutes after a meal with at least 20 grams of fat is critical to absorbing the optimal dose of the meds. Studies have clearly shown that FAR less of the drug makes it into the bloodstream if it isn't taken with enough fat, or soon enough after eating the fat. It would be completely masochistic to tolerate all the side effects of this med without taking in enough fat to absorb it properly!

Once that all sinks in then it is just a matter of reading all the nutrition labels very carefully and choosing whatever sounds the easiest to get down. It's only 12 weeks of eating that way so it shouldn't be long enough to undo his years of healthy eating, and it ultimately may save him having to deal with liver failure farther down the road. There are not many things I wouldn't do to avoid that. Good luck!
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Avatar universal
I started the Incivek triple therapy treatment in November of 2011, after having been diagnosed with Hep C in late 2009. During my first 90 days I took Incivek (2 pills, three times a day), Ribivirin (3pills, twice a day), and Pegylated Interferon alpha 2 (one shot per week), and at 90 days dropped the use of Incivek, and continued the Ribivirin and Interferon at the same perscribed doseage as before. During the time I took Incivek, I had to figure out how to take 20 grams of fat with the incivek. Thank God for whole milk. Whole milke gives you 1gram of fat per ounce of milk, so a piece of toast with butter & 10 ounces of milk would get me through another regimen of meds. It's amazing that all three of these meds can cause dry mouth, taste changes, loss of appetite, and mild flu-like symptoms, which only add to your difficulty in successfully completing(gagging down) another round of meds. I had the cough(consistantly for six months) dry mouth, taste change, loss of appetite, anemic blood (just above the level where transfusion would be needed),dry skin, itching (like a lunitic who raised bed bugs)hair thinning, tiredness, weakness, irritability, depression(i never thought about killing myself or anyone else, except maybe the bedbug guy), and on three occasions, rage. I experienced confusion and forgetfullness of mind, lack of articulation, and clearity of comprehension on some occasions where someone was talking to me or asking or answering questions. I may have lost a little vision, though I would not believe it to be very much. I also experienced swelling in my ankles on occassion, as well as pain in my knees and calfs, along with some painful swelling in my left elbow. I took tylenol for the swelling and pain, and that usually did the trick. I was so happy when I finished the Incivek portion of my therapy(at 90 days), knowing I would no longer have to gag down 20 grams of fat everytime I took my meds, and had hoped that I might also find some relief from the persistent cough, as well as the exhaustion I had been experiencing for a couple of years before I started treatment, which had increased with the start of medication to about double what I had felt like before treatment began. I could literally feel my energy draining out of my shoulders and legs at times during treatment, which was surprisingly a somewhat painfull experience. But relief was not to come as yet, as the cough, the exhaustion, the dry mouth, dry skin, itch, taste changes, all of it still affected me, and the loss of appetite associated with this therapy persisted, though now, minus the 20 grams of fat 3 times a day during the 90 days of incivek, I began losing weight at breakneck speed, which heightened the other side effects that were strength or energy related. The only good news was that which came after every one of my labs (bloodwork), which confirmed exactly what my Doctors were hoping for, zero detectability at 4 weeks into the program, and none since. I have been off this therapy for a few weeks now, having taken my last dose of ribivirin a week after my last shot of Interferon, on the 15th of May. I can report that my cough has continued to dissipate, as has the hair loss, the loss of appetite, and the taste changes. I am still cycling the medications I have been taking for the last six mounths through and out of my system, and the tiredness, weakness, irritability, dry-mouth, dry-skin, and itchiness still remain, as does the mental confussion, though clearity is beginning to show signs of re-occupying the places it had abandoned once I began the treatment. All of that being said, I want to brag a little on the people at Vertex, who after finding out that my medications were to be shipped late, sent a three day emergancy packet of Incivek by air to our airport, and made arraingements for a taxi to pick it up and deliver it to my house, free of charge, so that I did not miss a dose, as incivek was the only med I did not have an extra three days worth. Why did they go to all of that trouble? Because they really do care about your treatment, and it shows in the customer service and customer care aspects in their overall approach to direct patient relations and going the extra mile. I will never forget how efficiently they got my missing meds to me, or the trouble they went to in order to make it all happen (my meds arriving at 3:00 am at my door). Finally, I'd like to encourage any of you who are thinking about starting this therapy to go ahead and do so, if your doctors have identified you as a probably candidate for success on this program. Sure, for six months you may suffer as many side effects as I did, and it may be absolutely brutal at times. But there's success at the end of this therapy, and we can do anything for six months when we put our minds to it, right? Besides, the alternatives are not very attractive, and would dictate that we live the rest of our lives with accelerating liver problems, potentially spiraling energy levels, and an ever weakening immune system, opening us all to many other ailments good immune systems fight off of us. Seriously, all of you reading this note, please get yourself checked for the Hepititis virus. If you find you indeed have it, and your doctors feel your a candidate for success, begin the therapy, and allow your life to return to you. It is quite costly, so make sure your insurance is in order, and find any additional sources of financial assistence possible. Those of you without insurance, can apply for insurance through your state agency, and if that does not work, write directly to the companies who manufacture the meds needed for the program. They will get you your meds for free, though it might take a little longer to coordinate all of that. Regardless, find the way, because the way is out there, and put the hep c virus in remission by completing the Incivek triple therapy regimen for Hep C patients. You'll be glad you did it. I know I am. Good Luck.  C. Daniel Fowler 6/8/2012.
Helpful - 0
1976414 tn?1326171323
I do Boost + 1/2 Tbsp of flax seed oil....shake em up and drink em. 20 Grams of fat right there...drinkable...down the hatch!
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244899 tn?1313624639
I did protein shakes with whole milk and peanut butter. I have been und since week four and just finished my 24 weeks. Good luck. Joe
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Avatar universal
I am a chocoholic, but after starting treatment it just tasted bad to me.. However, Haagendaz Strawberry ice cream milk shakes made with whole milk tasted great and was pretty much all I had in the first 12 weeks.. I sometimes added half a banana to the milk shakes as well..    I would eat other things but found that almost everything tasted like it was burned.  I could not eat any wheat breads or even peanut butter.  I was able to eat white bread with a little chicken and cheese.. and some soups, but really not much else..  The ice cream is 16 grams of fat for 1/2 cup if I remember correctly.. and with the milk added I easily got my 20 grams.   I'm now in week 18 and having issues with anemia, so they reduced my Ribaviran... but, my tastebuds are better and I can eat peanut butter and other stuff again.. Can't wait to go out for a big old burger when I'm done.. Six weeks left..  
Good luck to you and your father..
Helpful - 0
223152 tn?1346978371
So danielle, how is your dad doing.  Why don't you give me his stats --

when he started,
pre treatment viral load
has he treated before
is he cirrhotic
has he had any VL tests yet, if so what are the results?

I am keeping a spreadsheet and you can find it in my pictures -- just click on my screenname.  Everyone is helping me do that by posting stats.

note to pooh -- it didn't take me too long to get sick of the Greek yogurt.  It is such a change from the fat free yogurt I have eaten for years. -- and I don't have to do 20 grams of fat with Victrelis, but still, I have to eat fat with the riba and something with the VIc......
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Avatar universal
Many forum members have discussed ideas for the fat intake over the past months.  I posted the ideas in my journal:    
http://www.medhelp.org/user_journals/show/333000/Incivek-Take-with-20-grams-of-fat
Advocate1955
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Avatar universal
Everyone likes ice cream, heavly buttered toast, regular cheese. Yes it would be better to eat healther foods but right now just get the fat.   This fat girl has had no problems eating high fat except that 6am dose.
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Avatar universal
I used the chocolate milk (and I was UD at 4 weeks)
Pour one cup of WHOLE milk in a glass, add 3 tablespoons heavy whipping cream and add the chocolate ( I use Nestles' Quik) Easy for me to get down and has 20g of fat
Helpful - 0
1815939 tn?1377991799
I was in the same boat as your father. I have not eaten high fat foods for decades, no junk food, no transfats, no fast foods, cut the skin off the chicken and removed the fat from meat, no sweets, etc. So the high fat was not easy for me to tolerate. Here are some foods I ate which have 20 grams of fat:

1 avocado
8 oz or so of Greek yogurt (NOT the low fat type)
peanut butter
butter
whipping cream
egg nog (20 grams in 1 cup)
mayonaise
olive oil
1 cup ice cream
2 oz Havarti or Chedder cheese

If I ate a regular meal I would top it off with eggnog or whipping cream or lots of butter or mayo or olive oil. Sometimes (usually morning) I ate just the Greek yogurt, a banana, and some buttered toast. I always ate something solid with the yogurt and I ate more yogurt than I had to just to be on the safe side, LOL).

If you make the shakes with ice cream (not low fat) and add some heavy whipping cream and a banana or other fruit and maybe some protein powder it would be a healthy item other than all the fat, but the fat is only for 12 weeks.

You can also add some olive oil to a pasta dish or even to sauteed fish or some other dishes. Just be sure he eats all of the olive oil.

It is not easy. I got very sick of Greek yogurt (and I love yogurt).

One thing to keep in mind is that if he does not eat he will get nauseated. It is sort of a catch 22. The meds make us a little nauseated (some more than others). However, getting hungry, even if we do not really feel hungry (but it has been a few hours since eating) also makes one nauseated. It took me a little while to figure that out. Then if I ate something, I felt better.

I also have been adding tasty items. I don't know if this would work for everyone, but it helps me. Most food has no appeal for me at this time and has no taste (I am on week 15). However, I found that if I make the regular food, like some meat and vegetables, and then pile on a few sides like, pickled beets, sweet pickles or bread and butter pickles, olives, etc. somehow it makes it more palatable. The pickles and olives really help. I also have been having some fruit with most meals (freash banana, tangerine, pear) and I have been buying frozen peas and corn to eat as vegetables. This may not work for everyone, but it sure has made the food more palatable for me.

I hope you can find some foods your dad will eat. He really needs that 20 grams of fat with each pill.
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Avatar universal
Effects of Food on Oral Absorption
The systemic exposure (AUC) to telaprevir was increased by 237% when telaprevir was administered with a standard fat meal (containing 533 kcal and 21 g
fat) compared to when telaprevir was administered under fasting conditions. In addition, the type of meal significantly affects exposure to telaprevir.
Relative to fasting, when telaprevir was administered with a low-fat meal (249 kcal, 3.6 g fat) and a high-fat meal (928 kcal, 56 g fat), the systemic exposure
(AUC) to telaprevir was increased by approximately 117% and 330%, respectively. Doses of INCIVEK were administered within 30 minutes of completing
a meal or snack containing approximately 20 grams of fat in the Phase 3 trials. Therefore, INCIVEK should always be taken with food (not low fat).

http://pi.vrtx.com/files/uspi_telaprevir.pdf .
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1669790 tn?1333662595
He should eat 20 grams of fat with each dose of Incivek.  There are many examples of what to eat, but here's a start.

http://www.medhelp.org/posts/Hepatitis-C/diet-on-incivek/show/1547942
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