Hep C Discussion Forum

hepCFREEwanab · Veteran Member

RE: Hello everyone!

Kellie · Senior Member

YAY Mena, I hope you two get some rest tonight and tomorrow. Looking forward to hearing about more successes during this new period. Kel

hepCFREEwanab · Veteran Member

OMG KELLIE, I did just as you suggested and it worked! 2.5 tbs of peanut butter did the trick. He was able to take the pills and keep them down. He also had some watermellon and a bit of icecream.

Thanks!

Mena

Zlikster · Guru

i was on Peg/Riba, so i can't say for Incivek, i was sorting out my nausea with homemade drink from freshly squeezed (domestic) lemon and ginger and tad of honey.

Kellie · Senior Member

Hi Mena,

I bought a product called "Udo's Oil" ( I found this at the health food store) and drank a smoothie made with protein powder, apple juice. I also added sometimes a 1/2 tablespoon of ground flax seed. Not necessary if you don't want. Sometimes I used rice milk or soy. I bought a Magic Bullet blender.

Very simple for me, as I didn't want to have something too heavy. 1 tablespoon of the Udo's Oil gave me 14 grams of fat. So about 8 oz of apple juice, 1 & 1/2 tablespoons of oil and 3 tbls of protein powder (soy, whey, rice etc.).

This worked for me for 10 weeks. It allowed me to have something very simple and quick in the a.m. and pm.

Of course this is only my experience with it. You can research Udo Erasmas Phd. on Google.

In the beginning I also would drink the smoothie, set the timer for 30 minutes; at 30 mins I would take the pills and lay down for an hour or 2. This helped in the beginning with nausea. I pretty much used the protein drink as my breakfast and dinner. Of course I would snack in between. Lightly. biggrin

I hope this is helpful as I know how strange it is in the beginning. Just remember the strong medicine is doing good work inside of him, even if it makes him sick. Remember 12 weeks only.

I stayed away from milk and cheese, as much as I love cheese, pasta, pizza. too heavy for me now. But you'll have to experiment with Angelo about what works for him.

Oh, yes, I love the new picture of you both. I will post a new one of me soon. Best, kellie

Here some info about it:

Flora Udo'S Choice Oil Blend 8.5 Fluid Ounces Liquid

Product Label

Udo's Oil 3-6-9 Blend: contains the ideal balance of Omega - 3 and - 6 essential fatty acids (2:1) for people who want one product that gives then all of the good fats they need, without any of the bad fats they shioud avoid. Every cells, tissue, gland, and organ is dependent upon the presence of essential fatty acids. They are the main structual component of cell membranes and are necessary for cell growth and division.

Udo's Oil : is formulated by Udo Erasmus, Phd, an internationally acclaimed authority on the subject of essential fatty acids and author of the groundbreaking book Fats That Heal Fats That Kill. Udo's Oil blend is fresh-pressed in a state-of-the-art, low heat, light-and oxygen-free environment and packaged in an environmentally friendly glass bottle. Udo's Oil has a pleasant , nutty, buttery , taste and can be added unheated to foods, such as cereal, salad, pasta, or stir-fried vegetables, and even poured over dessert.

UDO's OIL 3* 6* 9* Blend: based on the ideal 2: 1:1 ratio of - OMEGA FATTY ACIDS

Made with Organic Flax, Sesame, and Sunflower Seed Oils

hepCFREEwanab · Veteran Member

KELLIE, what did you eat when you took the Inciveck?

Mena

hepCFREEwanab · Veteran Member

Spoke too soon! Dinner was a disaster... he tried to put something in his mouth and promptly felt like he was going to throw up and that was the end of that.

Everyhting always happens on the week end. Monday I am going to call his Dr. and ask him for an anti nausea pill.

Now I am dreading the 9 o'clock feeding of 20gm of fat so he can take the pills. I hope the avocado won't be too troublesome to hold down.

The upside is, that seeing him like this takes my appetite away and I already can see the pounds coming off!

What can I give him that he might be able to hold down? I am at such a loss... I feel so helpless! disbelief cry

Mena

Dillo · Senior Member

Hi Mena,

I didn't experience any nausea when I was taking Incivek but I was on a treatment of 2 pills three times a day instead of 3 two times a day. You might ask the Doctor if this change is possible to see if it helps. The every 8 hours times are harder for some people to get used to than the twice a day.

I also didn't always have 30 mins before taking to eat so I sometimes took it right after my food or during making sure to have plenty of fat. I also drank a lot of carbonated drinks, not cokes but things like sparkling water, mineral water, sparkling fruit drinks etc. I found that helped me release the gas build up that could have caused me to be otherwise have nausea. I always take a daily antacid like pecpid because I take a other drugs that cause stomach gases and acid.

I could nap pretty good with Incivek...it would make me sleepy but also had moments of staying awake (probably from napping too much at the wrong times;)

Hope he is getting better.

Kellie · Senior Member

Oh yes, Chobani yogurt is helpful too. Kellie

Kellie · Senior Member

Hi Mena, I had severe nausea the last 2 weeks of taking the Incivik. Whether it starts in the beginning or end of the 12 weeks I guess depends on the patient.

I tried 2 prescriptions for nausea. Compazine suppositories and Zofran (ondansetron) tablets. I liked the Compazine better because it has a mild sedative effect and doesn't cause constipation. A sx of Zofran is constipation. Now if Angelo has diarrhea then it would be helpful.

In my opinion, as we take these strong medications we have to be able to eliminate them daily. When I was using the Zofran it made me constipated and actually made my nausea worse in the end. I went back to the Compazine and things started moving well and clearing out within a few days. The sedative effect was good too, because I was having a hard time getting comfortable.

I did use ginger ale too. My diet consisted of banana's, dry honey nut cheerios, and ginger ale.

I have good feelings that these sx will even out shortly and he'll be feeling a little better.

Kellie

Cinnamon Girl · Guru

Hi Mena, thanks for the information. Actually, it`s ok for people with cirrhosis to take incivek or victrelis, as long as it hasn`t reached the advanced `decompensated` stage. If there`s anything in Angelo`s blood results you`d like us to help you with, just ask and one of us will try and explain what it means.

Good to hear he`s feeling a bit better now anyway, and keeping his food down. You`re doing a great job, you`ll get Angelo through this! smile

Keep us posted!

Kellie · Senior Member

oh, one more thing - if I absolutely couldn't drink or eat I would do 2 tablespoons of peanut butter 30 minutes before the incivik. This might work right now tonight. Do you have it?

-- Edited by Kellie on Sunday 7th of July 2013 01:10:48 AM

hepCFREEwanab · Veteran Member

Let's see if I can answer all the questions.

We first met with the Dr. on April 23, 2013

He ordered a bunch of blood tests done and an abdominal sonogram.

Met with him again on May 28 to discuss results.

I asked for copies of all the results and although I am usually pretty good at understanding the results, there are things I can't figure out.

Basically what he said was that if he did not start the treatment it would be a very poor prognosis.

Told us his genotype was 1b and that he would be doing the Pegasys, Riba 1200 mg daily along with the Inciveck .

We are scheduled for the 2 wk blood work on tuesday 7/9.

From what I read on here, Inciveck is given to people without chirrosis so I assume that he does not have it.

Strange how things change! Since day 0ne , June 25th all he seemed to be able to do was nap, now since yesterday he has not been able to rest at all.

We are prepared with crackers, ginger ale, ginger, alchol ( which by the way calmed the nausea if he smelled it).

Mena

mallani · Guru

Hi Mena,

As Angelo is taking three incivek instead of two, maybe he needs some extra fat. Keep experimenting until you find something that does not make him feel nauseated. Yoghurt, bananas and icecream are all useful. I presume he takes the Ribavirin at the same time, as that would make timing of meds easier.

I always had my Victrelis WITH food, rather than wait half an hour. In my 48 weeks, I never had any problem with nausea or vomiting, so can't give you any advice. Try to keep foods simple, with not too much spice etc.

I'm sure it will get easier. Good luck. Do you know how long his treatment will be, depending on response?

Tig · Admin

Hello Angelo and Mena! Glad your night was a little smoother smile Do you have the laboratory results showing your genotype and viral load? Did you have a biopsy or a fibroscan? That helps us understand the HCV type and severity of fibrosis.

As for nausea, the doctor can give you medication to help those times when it's severe. The milder episodes can be helped by trying cool, not cold ginger ale. Some even prefer it to be flat (uncarbonated). A couple of soda crackers can help at times too. I find that my nausea is most intense on day two and three following the Interferon injection. I hope your symptoms lessen soon. I know most of us develop a pattern we can kind of follow through the week. Not always, but it helps many times to know what some of the SX will be. Good luck!

hepCFREEwanab · Veteran Member

yawn I love you guys!

Angelo last night seemed to be a little better. We had company so friends kept him busy talking for a while.

This morning at around 6 he told me that he felt nauseous maybe because he was hungry. He wanted some crakers but was able to eat maybe 1 or 2.

He takes his meds at 9 am so he has to eat at 8:30. actually he ate pretty good but after taking his pills felt like he wanted to throw up.

Oh NO I said, you can't! What is going to happpen if you throw up your meds? STRESS, STRESS for me!

So I googled and I found that smelling alchol helps or drinking a little water with baking soda. Did both and now after 55 mi. he's still keeping his food down.

What were your remedies for Nausea?

I swear, I would relive my year of hell if it would spare my husband from this ordeal.

I admire all of you that worked through your treatment, I can only imagine what a strugge it must have been or still is for those of you still in treatment.

I guess just projecting the fact that the light at the end of this dark tunnel will shine bright for all of you once this is over, gives you the strenght and courage to hang in there to the end.

That is what I keep on telling Angelo and I strongly believe that the way GOD helped me, HE will also help my husband.

All of you are in my prayers.

Mena

Rescape · Member

Hello Angelo and Mena,

Sorry for the rough night. I had much confusion and inability to concentrate during the first 12 weeks of treatment. I tried to do too much at work and nearly paid a dear price several times with ladders, power equipment, and even driving. Please be very aware of your mental state and do not try to do more than you can handle until you get your handle back. Brother, I am pulling for you.

Mark

edmed · Veteran Member

welcome Mena, Thanks for posting and thanks for being there for Angelo. The first 12 week are tough but having the support at home is very very big plus for the both of you. I couldn't do it with out support from family and friends. After all, Its true when it come to Dr Jeckel and Mr Hyde or riba rage. time out , time out and the understanding of my family has been a life saver. keep on posting.

Biggyb · Guru

Welcome Mena, brain fog is very common. I am 2 wks post treatment (did 48 wks) and mine is just starting to subside. And moods are very common. Be prepared for Dr Jeckel and Mr Hyde. Just ignore, it's the drugs not him.Keep us informed and good luck. ~Bob~

Kellie · Senior Member

Hi Mena, welcome and bless you for being a caretaker to Angelo. I know I wouldn't be able to do this treatment without the care and love I receive from my husband. Small meals for Angelo from now on. They can be frequent if he's hungry. Just not all at once. I came down with brain fog very early on also. Yes, call the doc and let them know about the early sx (side effects). It's just a really strong medicine. I'm on triple treatment also. I just finished the Incivik last Friday. I'm feeling much much much better now. It was tough but doable. Post as much as you want. We're here to help you, Mena. Kellie

ps - my son moved to Brooklyn in January of this year. He loves it there. biggrin

ucbgal · Senior Member

mena,

you're doing an excellent job and must love him dearly. obviously you're a fighter as well! the more obstacles we face in life make us even stronger.

i'm not a guru and only on day16. here's my 2 cents worth of advice; call dr&inform,don't make angelo that meal for a while,go get some otc stomach meds,and try vitamin b-12. the b-12 circulates blood flow and i assume creates more oxygen in your body.

stay strong and keep on posting!

sandy,ucbgal

hepCFREEwanab · Veteran Member

Hello, my name is Mena and I am Angelo's wife. I want to thank all of you for all the support and advice you have given my husband. We both really appreciate it.

I guess from now on I will be his spokesperson. Yesterday Angelo was fine or as fine as we can expect under these crazy circumstances.

Anyway, last night at about 10 pm or so he told me he was hungry and that he would like some pastina. I cooked it and he ate it with such gusto.

During the night as he was getting up he threw up all the damn pastina. This morning he seems so lethargic, and talk about brain fog!!!!

What a change in less than 12 hrs. I know that brain fog can be a SX but overnight? He wanted to go pee and he opened the refrigerator. I had to cut up his fruit because I was afraid he was going to cut himself. He reminds me of my dear mom who had Alzhemeir's and that it's too painful for me.

The only good thing is that the second shot of the Pegasyn brought on NO FEVER! I so hope he does not get a rash!

We were supposed to start his treatment last year but I found out I had Breast Cancer so we put that on the back burner while I tried to get better

and with the help of GOD today I am cancer free.

I know he's going to be OK also, it's just the process that's too complicated and long!

I hope I will also be welcomed among all you wonderful folks!

Mena

Bills · Guru

Hi Angelo,

First I love that name wanab it's gona stick, LOl, You sound very determined to get this done. I think that's great attitude and facing it head on will keep you strong. as said by everyone here lost of advice, Tips and great people welcome to club and good luck with treatment.

Bill S

Cinnamon Girl · Guru

Hi Mena, you are very welcome here, and we will be pleased to receive updates from you on behalf of your husband!

Sorry to hear Angelo had a bad night and has been feeling so confused. Yes, brain fog and lethargy are common side effects and often include lack of concentration, memory problems, and difficulty thinking clearly, although it must have been very alarming to see him acting like that this morning. How is he now, still the same or better? His confused behaviour was probably caused by the medicines, but if it`s still the same I agree that you should get in touch with his doctor, just in case there`s anything else going on, especially as he had thrown up all his food during the night.

It`s often better to eat smaller and more frequent meals or snacks while on treatment, and there are loads of food and snack suggestions here for the 20g of fat that`s required with the incivek. Just type `20g fat` into the `search` box at the top of the page.

Congrats to you for recovering from breast cancer, that`s wonderful to hear, and you are doing a great job taking care of your husband now.

Keep in touch and let us know how Angelo is doing now. Hope he`s feeling a bit better. Thanks for updating us on how he`s getting on so far. ~ Jill

Dillo · Senior Member

Hi Angelo, Welcome to the forum. Lots of good people and information here. I am finishing up the last few weeks of my triple treatment. I am on the same one as you. I didn't get and still don't get many sx from the Pegasys. First couple of days after my shot were worse and it leveled off after that. My sx on the with Incivek weren't too bad either considering.

I used to add some extra fat when I took the Incivek. I still got some anal burning. I used Tucks also. I think it's hard to avoid some burning. The fat and drinking lots of water helped.

I did get rashes ...especially after doing my Peg shot they acted up. Keeping the skin moisturized and cool helps. I was told to use any moisturizer except ones with alcohol cause they would dry out the skin. I had good luck with the Aveeno bath wash and moisturizer. Sometimes to sleep I would take a cool bath in the bath wash and sleep with a fan directly on me. My rash got worse about the 10th week and went to the dermatologist and he gave me triamcinolone acetonide cream and I still used the moisturizer also.

The treatment did tire me out...it also hurt to walk a lot more than before treatment. If you get a rash that seems to progress see the Doctor about it. Expect some emotional distress and even some unexplained anger. Just part of the treatment. If you know it..it will help you recognize it.

It gets better after the Incivek.

Keep us up to date.

ucbgal · Senior Member

welcome to the forum and i wish you only the best. it sounds like you're doing quite well w/the sx. for some stange reason i'm noticing on this forum that the sx seem to hit us females quicker.so consider yourself blessed&lucky.

read my post regarding my wk one,(day 9) results. i think you'll do just as well. in the past 3 years my liver enzymes became elevated and i wasn't my usual energetic self. mallani told me to stop all herbal supplements. thankfully i listened and my enzymes went down!

sandy,ucbgal

Tig · Admin

Hey Biggy, FYI, they do have flushable and septic safe baby wipes now! They make for a real kewl move too, lol!! wink

Biggyb · Guru

edmed wrote:
What work for me was benadril and triamcinolone acetonide cream for rash,

Triamcinolone acetonide cream for rash worked great for me also. I had a bad rash. Diaper wipes good too instead of TP. Just don't flush em...lol

edmed · Veteran Member

hey Angelo welcome, I'm finishing WK 18 tomorrow. I'm not going to make it a big deal but this triple therapy kick my ??? for 12 WK i dealt with alot of SX.

I research how to deal with the SX and spoke to my Doctor about how to deal with SX. What work for me was benadril and triamcinolone acetonide cream for rash, analcort, lidocaine jelley and tucks for my bottom. Stayed away from the sun and hot showers since i live in south fl, lots of water, lots of rest, tylenol and Advil for body aches. Thats how i made thru the 12 WK of incevik and i must admit it has goting much much better since my last dose of incevik. Hang in their Angelo, read, read, and search the forum the answers.

kEEP POSTING ON THE FORUM IT HELPS SO MUCH....

mallani · Guru

Hi and welcome Angelo,

Sounds as if you've joined the club! Do you know your starting Viral Load (VL) and have you had a liver biopsy? That would make answering your question about Incivek v. Victrelis a bit easier. They both are great drugs, and we have had a lot of success with both. You sound as if you are already suffering one of Incivek's unpleasant side effects i.e. anal discomfort. There is also an unpleasant rash associated with Incivek. Victrelis is a 'milder' drug, but can cause a more severe anaemia i.e. more tiredness. I did 48 weeks with Victrelis because of my cirrhosis, and it knocked me around. However, it appears it was worth it! After 2 weeks, your VL will have dropped, but it is difficult to predict how patients respond. Don't expect any changes in your liver enzymes for a while. We're here to help with any questions or advice so keep us posted. Cheers.

Kellie · Senior Member

I'm going to refer you Cinnamon Girl or Mallani on this one. They are more experienced with the why and hows. I know my doc put me on the Incivik because I am non cirrhotic and that's the rx they've used the most at their clinic. Mallani mentioned that it's regional issue too. Good question! K

hepCFREEwanab · Veteran Member

Thank you so much for your words of encouragement.

I drink about 100 oz. of water daily, my wife makes sure I get the 20gm of fat when taking Inciveck ( by the way my DR. instructed me to take 3 pills 2x a day, every 12 hrs.). She has been feeding me peanut butter, nuts ( pistacchios, almonds,) cream cheese, ice cream...always measuring the portions to equal the 20gm needed.

Just wondering what is the difference between the Inciveck and the Victrellis? What would make the Dr. give one instead of the other? What criteria is used

in the decision?

Kellie · Senior Member

Hi Angelo, Welcome!!

I'm on the same treatment. Drink lot's of h2o. Stay out of the sun for now. It seems to activate the rash. If you get the rash be proactive quickly and ask the doc for a rx cream like Desconide .05%. I also used Zyrtec & Zantec for the rash too. Talk to your doc/Np about them.

Use your preparation H too. It worked great for me. But getting enough fat when I took the Incivik was the key to avoiding the booty burn. I was a vampire for the first 11 weeks of treatment. I wish you lot's of easy sx. Feel free to chime in whenever you have questions. This is a wonderful forum. Without it I don't think I would have lasted without all the good energy from the caring folks here. Oh and Happy 4th bro Kel

Biggyb · Guru

Good luck Angelo, i was on the other one, Victrelis. So can't help you much, but search at top of page works great. ~Cheers

marktrux · Senior Member

Welcome Angelo. Triple TX with Incivek can be tough, really tough. It does affect everyone differently, but butt problems, exhaustion and rash are some of the most common. The good news is that once the Incivek ends, so do a lot alot of the sides. The butt problems disappear within a week and the rash normally disappears within a month. Unfortunately the exhaustion can linger throughout the full coarse of treatment. But your energy level usually returns in spades pretty quickly after treatment ends. Be sure to get at least 20gms of fat when you take the Incivek and that can help cut down on the rear end problems and it does help with RX absorption. Exhaustion can really suck, but just do what you feel like doing. If that means just sitting around exercising your remote thumb, do it. It's your time to take care of yourself!

hepCFREEwanab · Veteran Member

Just joined this group after reading many of your posts.

After having abnormal Liver Enzymes for many yrs. finally DX with HEP C in 1992. Genotype 1b currently on triple tx of Interferon. Riba 1200mg daily and Inciveck 6 pills daily.

Started TX on June 25. After first Injection had fever for almost the whole week, 2nd injection NO FEVER at all but started with the anal burning.

Using TUCKS which seem to help a little. Feeling very tired .

Tuesday getting my 2 weeks blood test. What changes can I expect?

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~Bob~

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