Hepatitis C Community
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This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

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Just joined group and waiting to start

Hello people I just joined this forum and am about to start the Incivek program. Just yesterday my appointment with my Dr. was backed up 5 more weeks so I have lots more time to prepare. I work on the road in media sales and was wondering how many people have had to take time off because of side effects.
Thanks
29 Comments Post a Comment
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766573_tn?1365170066
Hi Graham ~ Greetings and welcome to the forum.

There are lots of posts related to this very topic as the Incivek/Triple therapy does have it's share of side effects. Not everyone gets them but they can be incapacitating ~ especially if one is not prepared. In a way maybe it is an omen that your doctor is backed up as this while give you plenty of time to mentally prepare.

As far as a general introduction goes, while there are many facts to treating it seems to me that there  are three areas of interest many of wondered about when first starting treatment. They are:

1. Knowing, recognising and dealing with the side effects.

One example of several is Hemolytic Anaemia is a known side effect of Incivek as well as Ribavarin). It means your haemoglobin way gradually drop and as a result you may feel more tired than usual doing the most routine of tasks.

Another is a possible side effect (sx) is a rash since Incivek over the controls is (56% vs 34%). A topical steroid helps plus an oral antihistamine.  <-There are tons of threads related to this.

There are ways to prepare for possible intestinal sides:

haemorrhoids (12% vs 3%),
anorectal discomfort (11% vs 3%),
anal pruritus (6% vs 1%)
diarrhoea (26% vs 17%)

Then there is possible nausea **and** The fat intake:

With Incivek it is necessary to take the meds within 30 minutes of a meal/snack that is 20 grams of fat. This is important for proper absorption of the medication. These links have some ideas plus they point out how important it is to adhere to the Incivek dosing schedule:
http://www.medhelp.org/user_journals/show/333000/Incivek-Take-with-20-grams-of-fat

http://www.medhelp.org/posts/Hepatitis-C/Getting-fat-on-Incivek/show/1580662

http://www.medhelp.org/posts/Hepatitis-C/starting-incivek/show/1621722

That is just a brief outline of what to expect in the event your doctor does not mention these things. Everyone here is more than happy to help with any one of these so keep in mind you are not alone. Indeed, what with being on the road, we will are only a keystroke away.

2. Having a "Plan B" both at home and at work.

I am not sure how often you are on the road and whether this involves frequent flying or driving or how physically demanding this job is. Again, there are many topics related to this but here is a helpful thread to give you an idea:
http://www.medhelp.org/posts/Hepatitis-C/Starting-triple-soon-and-concerned-about-work/show/1711470

3. Questions to ask your doctor *and* dealing with your doctor's office/staff *and*

http://www.medhelp.org/posts/Hepatitis-C/First-Dr-Appointment-Questions-What-do-you-wish-you-had-asked-/show/1756382

Dealing with the doctor's office or the system merely means finding a contact person or an effective way to get weekly copies of your labs. In the beginning it is likely you will have labs once a week. Plus, there is the copy of your biopsy and other medical documentation. It helps you gauge your progress when you have copies of your own. Also, you can post results and obtain input from the group in the event your doctor is not available.

__________________________
I hope this is not too overwhelming. Given that no one is really on line right now I wanted to give you food for thought. Maybe the next time you post you could mention:

1. What stage of fibrosis you are (according to your last biopsy, ultrasound or Fibrosure).

2. Are you treatment naive, a prior partial responder or perhaps a null responder?

Take care,
Konyha
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1689583_tn?1387755994
Welcome my fellow Montrealer , who are you seeing in Montreal are you with a hepatologist from the liver transplant clinic at the royal vic , I cannot comment for I am preparing to start tx soon I go back to my hepc speacialist in 3 weeks , what is your genotype and what stage are you .You will find this forum has some very helpful people with good knowledge . Interested inknowing more about your status.
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Avatar_m_tn

Nothing much to add to the excellent advice Konyha has given you ...

Welcome to the group from a fellow Canadian..

Will
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2136167_tn?1374732251
Welcome to forum and all the best to you.Great to hear from another fellow Canadian I am originaly from Toronto but working here in Florida for many years as a nurse. I miss Canada incl health care system but except weather. I had to take time off Graham I had very bad sides ,my work is very physicaly demanding but many people work it depends on circumstences.Good luck keep in touch this site is priceless
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1689583_tn?1387755994
Hi , to  another fellow Canadian nice to hear from the ones that do post  take care and be well.
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Avatar_f_tn
I just wanted to welcome you to the forum.  (I think the Canadians are taking over)!  LOL
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1743719_tn?1326776482
Been off since July sick all the time had blurred vision could not drive even clipped a car so please be careful good luck
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Avatar_f_tn
Welcome to this forum. I did not discover it until the end of my treatment to my dismay.  My doctor did not warn me how bad the symptons might be and I was totally unprepared for what I experienced.  I was not able to work and still cannot work 7 weeks after treatment.  But I don't think it would have seemed so bad had my doctor warned me, or I had a place like t his to go to for ideas for the different symptons, and conversation with the only people that actually understand. Good luck on your journey!  And remember not all of us have severe symtoms (symptoms).
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Avatar_m_tn

Been off since July sick all the time had blurred vision could not drive even clipped a car so please be careful good luck
. ------------------------------------------
Monkey"

Sorry to hear you were one of the minority that had probelms with your vision:
However to:
graham :
the truth is 76% of patients doing HCV therapy have "no" or  "very mild" issues with their vision.(below)
Best...
Will


Been off since July sick all the time had blurred vision could not drive even clipped a car so please be careful good luck
.
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Avatar_m_tn
Sorry ,,meant to include some info

:http://hcvets.com/data/hcv_liver/eyes.htm

Cotton-wool spots were found in 31 patients and retinal hemorrhage in nine patients during treatment (24% of patients). These lesions remained asymptomatic and disappeared in all patients. A previous history of arterial hypertension (RR 4.60, 95% CI 1.95-10.85), age above 45 years (RR 2.80, 95% CI 1.36-5.85), and use of pegylated alpha-interferon (RR 2.75, 95% CI 1.41-5.38) were significantly associated with retinopathy. Neurovisual impairment was present in 31 patients (20%) before treatment and in 74 patients (47%) during treatment.

In studies including a significant number of diabetic patients [5,7] diabetes mellitus has also been associated with retinopathy. Furthermore, improvement of retinopathy is delayed in hypertensive and diabetic patients after ending treatment [7]. This relationship emphasizes that IFN-induced retinopathy can result from physiopathological mechanisms in common with other retinopathies related to microvascular abnormalities.

Conclusions: In conclusion, this study showed that signs of retinopathy and neurovisual impairment were common in patients receiving alpha-interferon therapy but were rarely symptomatic. It suggests that alpha-interferon may usually be continued in asymptomatic patients as long as there is careful fundoscopic examination.
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2136167_tn?1374732251
Hello there fellow Canadian,thank you for your comment ,how are you doing ,are u finished with your Tx?
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1689583_tn?1387755994
Thank you for asking will be starting soon, in 3 weeks I see my hepc specialist to discuss in more detail . Will find out soon enough , thank you , and yourself how are you doing ?
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1689583_tn?1387755994
FYI I am leaning towards Inc myself , I have had some time mentally to prepare for this  myself and I have a  very close friend on this forum who will stand by me for the hard times, this is his 3rd time tx so he has been through a lot of sx , he is my rock.
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Avatar_m_tn
Naya  & printze :
Possibly you folks could chat by PM so as not to take away from the new OP's thread?

Will
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766573_tn?1365170066
Hey great. Looks like lots of folks from your planet are members. Err. I mean country. Ha. Just kidding. I lived in Newfoundland; well actually Goose Bay Air Force Base, Labrador for eight years before I moved to America :)
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Wow Konyha! thanks for all of the information. You have just filled a few of my next 6 weeks with reading material. I feel like such an idiot because I know so very little about Hep C or about all of the terminology or even where I stand. I'm 62 and just found out not long ago.

I had a problem with my gallbladder and that's how it was discovered. I had my gallbladder removed in April and afterwards the surgeon came up to my room and told me I had a life expectancy of two years unless I could get my liver specialist to get me into this program. He told me he sent the film of my liver to my specialist. I had talked to my liver specialist in May and was supposed to see him yesterday to take the first steps to get me started.

It's very scary because I have a 14 year old son here with me and Id like to at least be able to get to see him into adulthood. I haven't told him yet because there seems to be a very good chance that I will make it through this. If not... well then will be the time to tell him and get him prepared.

I can see that I have a lot to learn and a very hard road ahead. I'm really glad that I searched out this place. Thank you once again and i look forward to your guidance. Thanks to all for the kind greetings.
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Avatar_f_tn
Hi and welcome.  Yes, you're right, you stand a very good chance of getting through this, alive and well.  Have you had a biopsy?  That will really tell you what you need to know about the level of damage to your liver.  

You will of course need to tell your son that you're planning to treat, but be careful about scaring him.  We had a very serious family meeting with our kids (same age BTW) to discuss Hep C and what to expect for the treatment.  As it turned out, about 75% of the side effects that we prepared them for did not happen, and I think we freaked them out a bit, unnecessarily.

Good for you for deciding to treat, for yourself and your son!
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Avatar_f_tn
Welcome Graham!!

I am currently treating for 24 weeks and did incivek for the first 12. Congratulations on treating:) These are tough meds as I'm sure you are aware, but they really go after this virus in ways that all previous meds did not do together.

Splitting tx up into 12 week segments really helped me. For the first 12 weeks I lived day to day and thought only of the 12 weeks and looked forward to getting off Incivek. After that you should feel much better, which makes it a lot easier to deal with the second part on just inf and riba.

I wish you all the best and to be undetected within the first four weeks!!
I was rvr und. In that time thanks to these powerful drugs and now have a very likely chance of cure. :)

Best wishes,
Laura
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(Even if I was doing 48 weeks i would have still split my time up!;p)

I hope you do awesome!
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This is excellent advice.  Breaking tx into segments helped my husband deal with the idea of tx much more easily.  During the first part of tx, I would remind him - "you can do anything for only 12 weeks, 11 weeks, 10 weeks, etc.-yes, I'm well aware that this was easy for me to say :) Then we started all over again for the second 12 weeks.  Counting down 24 weeks just felt too long.  For those on 48 weeks, I bet this trick helps even more.  
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To be honest I am only doing this for my son. If not for him... I would not do it and welcome my surgeons prognosis. My life this past 12 years has been hell and I'm only still here because at the time, I had a 2 year old keeping me here. My daughter and her best friend were killed by a drunk driver who's father is very rich and he only did 31 days for killing the two girls. Since then he has just haunted and taunted me with his games & death threats. No one can ever tell me you can't buy justice. I went to the police again as recently as March. They know who he is... have a file on him... but also know who his father is and tread very carefully. Oddly enough... his father is the director of one of the worlds largest pharmaceutical companies, but not the makers of Incivek. I look at this as a way to buy time to get my son to adulthood. I would do anything for him so I will do this and I will succeed. And in the end if nothing has changed... at least I bought an additional year.

I also look at this as a year of learning about this dreaded illness that has killed millions over the years.  I like to write and work in the media so I'm hoping to write a few stories based on the things I am about to learn  get them published.
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I am so sorry to hear about your grief , you will be just fine and you will succeed with tx , you have all the support here you could ask for . Good luck with your tx .
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Hi Graham, welcome to the forum.  I am so sorry to hear about your loss.  Health will help you and your son needs you.  

You definitely need a plan B as mentioned above.  Some people can work and some cannot.  Sales may not go well if you have the RIBA rage and try to bite your clients head off. ;-)

I would be worried about driving too.  I would get dizzy driving sometimes.  I also had fog issues.  For instance, on a few occasions, I'd come to a stop sign and stop.  I just sit there until someone honked or something caught my attention.  My husband drove me for the most part and if I had to drive I did it during no rush hours.  Plan ahead on how you will handle things if you can't work or drive.

You will likely be tired after a day of work.  The last thing you will want to do is run to the store for instance.  Plan ahead so you don't have to deal with errands when you don't feel up to it.

There are some other posts you may want to search on that had good discussions on starting incivek/tx.  Here is one.

http://www.natap.org/2011/PDF/NurseMary.pdf

Also, really suggest you pick up some Lotion and use it twice a day staring now.  My pharmacist mentioned that those that used lotion daily as a normal part of life prior to tx were less likely to get the bad rash.  I used keri daily for years and switched to gold bond during tx.  

Best wishes and hope you svr.
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163305_tn?1333672171
Welcome Graham.

We are all different. I found it safer for myself and other to stop driving while on tx. My mind and reactions were affected.

A biopsy may show that your liver is only stage 0-1. If so, you might wish to delay treatment until the newer oral meds currently in trail stage are approved for use.
My advice, seeing that you have a child at home, is to take it slow.
Find out exactly how healthy your liver is before jumping into treatment.
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Avatar_f_tn
Oh my, I missed your response to idyllic when I saw this thread earlier.  Why is your doc pushing your appt out 5 weeks if your liver is in such a bad state?  You should get on the phone and tell the receptionist your need to be seen quickly, that your liver is in a serious state, and cannot wait.  The receptionists do not know the health of the individual when they adjust for schedule.  Are you seeing a specialist? At a liver transplant center?

You will likely have problems with working.  Your ability to drive and communicate will very likely be impacted.  They will be impacted worse if you are dead so the job is not really the highest priority.

I am assuming with a doctor telling you two years, you must have stage 4 liver disease.  Please make sure you are watching what you put in your body.  Did they talk to you about this?  No alcohol, no smoking, watch what you put in your body.

There are a number of people on this forum that are experts with stage 4 liver disease and hep c who have or are battling their way back to health.  If you have more questions on what you can do to fight this you may wish to include the condition of your liver in the title or the question.  It may also be good to put some additional info in your profile so people know the state of your liver for future posts.  You will find many good people and a wealth of knowledge and support here.  Be well, live is worth living.
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2131202_tn?1339967703
Hi Graham-- My husband is in week 9 of inc-peg-riba tx.  He has been UND since week 4, and that's what keeps him going.  He has stage 2-3 liver damage, genotype 1, first-time treatment.  He is in his 50's.  He is a self-employed contractor, and because of that he can be flexible w/ his work.  If he were not self-employed, I don't know that he'd be able to continue working.  This treatment is tough-- we expected it to be, but it is hard, hard, hard.  The worst has been the nausea for him--- it comes on out of the blue, and he has no choice but to "run for the bushes".  Not something he could do if he were trying to hold down a regular job.  It has been hard to be a home-builder and stay out of the sun-- dang near impossible.  But he cannot tolerate the sun at all, so he's found ways to function as best he can when he does have to be outside and keeps those times very short & sweet.

He has been very open about his illness and his tx w/ those he's working for and around, and the support from all of them has been fantastic.  You will have to decide how much you want to share and with whom as you enter treatment, but in his case, being open about what he is going through has been what allows him to continue to report to his job site, and stay home when he needs to.  Everyone, every single person, has been supportive and gets him through the rough days.  That part of this experience has been rewarding for us.

It really does help mentally to break this up into 12 week segments.  Just opened last box of incevik, 4 weeks to go on that, then only 12 more weeks.  Makes the end goal more reachable for some reason.

I hope they can get you started sooner than 5 weeks, but if not then use this time to prepare.  Steel yourself!!  Plan for being unable to work, at least some of the time, and watch out for the driving.  Most days, hubby can drive fine, but he has "woozy" times, too.  Be careful, and prepare mentally and physically for a rough go of things for a while.

BTW-- just took his first dose of Zofran today for nausea, and it is helping.  Tuck that drug name in the back of your mind and don't forget it!
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Hi spiffy,
I'm glad things are going good for your hubby. Thanks for the insight and tips. I will for sure keep them in mind. I hope the rest of his trip is an easy  downhill ride.
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Hi, I was diagnosed with Hep C about a month ago and since then this is all I can think about. Last thought beofre going to bed and first thing that comes to mind in the morning is how am I going to get through this. I'm 47 and been pretty healthy all my life. Since February, I've been haveing severe joint pain so went to doctors and after the blood test revealed high AST/ALT levels, so my doc checked for Hepatitis and found I had Hep C, 1b.
Went to see a GI and he recommended Incivek treatment after doing some additional tests. I don't drink, no drugs and don't eat red meat. I don't have any other health issues except for Vitamin D deficiency and just found out hypothyroidism.
My question is do side effects depend on your health prior to starting treatment? what can I do to prepare before starting treatment? I'm thinking of starting on Sept 14 and want to be preapared and in best of health before starting Incivek.
I lost my uncle a few years ago from Liver cancer and Knowing the pain he went through, I want to do everything possible to protect my liver.
I'm so glad I happened to see this forum, theres some really good information.
Thank you, Avi
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163305_tn?1333672171
Welcome to the forum.
You might want to start your own thread rather than tack onto this one.

The reason to do treatment for hep C is of course to rid yourself of the virus, but even more so, to save your liver from the damage it can cause.
Hep C does not cause damage to everyone who has it.
Because treatment is difficult for many and does have potential long term side effects, I would encourage you to get a biopsy to see exactly what is the stage of health of your liver.
If you are stage 0 or 1, you would be well advised, to consider waiting for the new oral interferon free meds which are showing great success in clinical trails.
If your liver is further advanced 2-3 you would want to treat sooner.
It is always best to have a good hepatologist, a liver specialist, and not just a GI, as your treating doctor if possible.

Okay, to get back to your question. Side effects are generally harder on a person with more advanced liver disease. But the virus and the treatment are tricky in that they vary widely from person to person.

Here's some links for good information about the virus.
www.hepcadvocate.org
www,healthyhepper.com
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