i had to quit at 32 weeks. the tooth that i broke off into the gum has been hurting like hell. along with whole side of right face & head hurting. doc not pleased. so.... i did do 32 weeks. so keep fingers crossed that i stay undetectable.. Taz~

Ok so got back from the eye doctor. He said he doesn't see anything majorly wrong with my eyes at all. He did however say that he saw several scratches on my left eye that he believes were caused by my contacts. So he said no more contacts. He said he wants to see me in a week for a recheck. Ok now the odd part...he also said he reviewed my 3 drugs that iam on ...riba, incivik, and the pegasys. He said he could not find anywhere that said any of these cause severe eye problems? I explained that I read and see right on my prescription for pegasys that it can cause blurry vision and that if any change in vision occurs to contact your doctor. Before I could finish that sentence he was shaking his head. He then said he saw nothing that would have to have me come off treatment. So that's good news. Just hope my vision improves. Still weird how he said none of the meds cause vision problems and never heard of blurry vision being associated with pegasys.

I have heard about vision issues and people needing to have their glasses prescription updated after treatment.  Being on the computer will dry your eyes out and dryness is rampant among us as you most  certainly know.  Try artificial tears.

I bought a nice glass water bottle with a wet suit type cover at the health food store when things started to taste bad.  It was expensive but I LOVE it and water tastes like water now, not plastic or more so in my case, metal.  Ick, I hated that!

Green grapes were also helpful for a time when the taste was bad.  That was soothing.

The Riba cough is more prominent for me now that I'm off Insivek.  I have a hard time clearing it sometimes and I sound like a heavy smoker when I cough.  

Hang in there, your Incivek hell will be behind you relatively soon, believe it or not. :) Kate

I get occasional slight blurriness when my eyes are tired or when I first wake up for a few minutes which didn't happen pre-treatment.  Hasn't been a big enough concern for me to ask about it though.

Dave

Update for week 9.

So yeh iam in week 9 now and the latest thing that just started I hope is nothing to be to concerned about.

Started having blurred vision in my left eye about 3 days ago. I notified my doctor about an hour ago. He set me up an appointment for tomorrow with the opthamologist to make sure everything is ok.

So yeh this is going to really suck if Iam forced to come off treatment cause Pegasys is playing with my vision.

I had something similar happened the first time I went on treatment with Pegasys back 5 years ago only it would come in go and I didn't think anything of it so never reported it to my doctor. This time it has been this way for 3 days going on 4.

I did a search on here and really did not find that many people complaining about vision issues while on treatment. Is this something a lot of you are experiencing too just not really highlighting it?

-- Edited by xtreme on Tuesday 22nd of May 2012 09:15:40 PM

I felt better after 2 days off Incivek. I can taste food now and my energy is 70% back. Starting enjoy working out, iching at night is still my problem after a week off Incivek.

Try low sugar fruit drink, it may help with the bad taste. I ate lot of fruit

instead of meal.

xtreme wrote:

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any tips for burning blurring eyes by days end, coughing, and bad taste?

-- Edited by xtreme on Tuesday 15th of May 2012 10:07:41 PM

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    Your eyes and throat, just like your skin and lips, will suffer if you get the least bit dehydrated, which these drugs will do. One of the symptoms of dehydration is a dry cough.

    When I got lax on the water intake, my itch got worse, and I would get a bad tickle in my throat with a cough.

     As bad as it tastes sometimes, drink all the water you can handle.  It helps in so many ways.

     You're way past halfway on the incivek...hang in there!

Brad

I had to switch to bottled water because I could not stand the taste of my tap water.  I buy those 2 1/2 gallon jugs at the grocery store.  After 22 weeks just about everything tastes gross! 

Thanks...well today is Tuesday (start of week 8) and so far so good...no bad week so far like last week. I mean it is bad...but nothing like last week. New things for this week have been my eyes are really sensitive to light. They burn quite a bit toward the end of the day now and even blurry by the end of the day. I know that me being a graphics designer on a computer 8 hrs a day don't help and I try to take breaks as often as I can.

Other thing is riba cough is still with me and is getting annoying. I just been taking cough drops.

Oh newest thing....water tastes horrible now. I have to really suffer to drink my rations right now. My whole mouth is very medicene'y tasting and bitter all the time lately. Iam very dry lately too. Sinus's, chap lips. Only thing not showing the over drying is my skin..thank god.

any tips for burning blurring eyes by days end, coughing, and bad taste?

Alan is right.  Happens pretty fast.  Within a week the rashes were gone and I felt much better overall.  Of course everyone is different!  "Past performance is no guarantee of future results."

I felt a little better the next day. No kidding. The half life on Incivek is very short, like 10 hours. By the third day I could really tell that I was "healing". If you have two weeks betwen the last dose and the lady's folks arriving, you will be amazed at the difference. Don't sweat it. If Incivek has a good trait, other than the fact that it works so well, it is how fast it leaves the body after treatment.

Alan

Sunrise747 wrote:

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Things got significantly better for me once the Incivek was done, Xtreme.  Not "normal" but quite tolerable.   Most have a similar experience.  You definitely have the right attitude.  Hang in there!

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Things got significantly better for me once the Incivek was done, Xtreme.  Not "normal" but quite tolerable.   Most have a similar experience.  You definitely have the right attitude.  Hang in there!

As much as you feel like curling up into a ball and pulling the covers over your head, try to be up and moving as much as possible.  Yoga twists, if you know how to do them, and going upide down will help move the toxins out of your liver and body and give you more energy.  Drink more water than you crave and keep reminding yourself that this is temporary.  My mantra was "just keep going" until I absolutely couldn't.  

If you do end up sedentary, make sure you are eating well.  Lot's of leafy greens.  You are ingesting poison and your body is reacting to that, help it through!  If you have access to help, as for it.  All I wanted was for food to appear when I was hungry, and once I asked friends to do that, it was sooooo much easier!  I'm in recovery and they even brought meetings to my house!  In hindsight that was the darkesst part of this therapy, but I am looking back with gratitude for how HELD I felt.  BUT, it wouldn't have happened if I hadn't told people what was going on.  Once I asked, they were climbing over each other to nurture me!  such an amazing community we get in sobriety!

Well just got back from my hematologist appointment. Not sure why my doctor even ordered it. He knew already my counts were dropping only a little. The hematologist confirmed this and basically said...everything looks good. You don't need any type of booster shot..not even close yet. So yeah basically I apparently have hit some new block way beyond the normal side effects I have been feeling up till now. Definitely not fun. I can barely eat and have a sore stomach and sore lower right side back ache on top of everything else. All the doctors seem to have the same answer...there is not much you can do...just got to fight through it. This is going to be the longest 5 weeks of my life. I only pray then once iam off the incivik that things start to turn around. I can worry about the remaining duration for the dual therapy then. Lord give me the strength to make it.

24 weeks are the norm if you are a relapser or a first-timer (treatment-naive) if you achieve eRVR (undetectable at 4 and 12 weeks) UNLESS you are suspected of having cirrhosis.  Then they recemmend 48 weeks. 

Xtreme,

Watch that rash, it sounds like it could advance and you DON"T want that! Be crystal clear with your practitioner about what's happening with it, especially if it looks/feels bad at times when they are not seeing it.  I ended up on prednazone for a very miserable 2 weeks and am still struggling with the itching.  (It's been 4 weeks now), and I've been off Incivek for 3 weeks.  

For the nausea I use Sea Bands-- the things you wear on your wrists for sea sickness.  You can get them at a health food store and they really work.

For your poor butt---I found witch hazel on an unscented baby wipe to be sooo soothing!  I used calendula diaper cream as well, ALL the time.  People also swear by butt paste.  Just be sure to put it on after you've cleaned and definately before you go.  Unprotected areas get burned !

I found my appitite changed from week to week for the 20 grams.  It was never easy, but peanut butter on celery worked well and sometimes whole milk mixed with 1/3 chocolate Boost was comforting instead of making me nauseous.  Mid day and night doses were not too bad, I only threw up in the morning, and it always happened because I gagged while brushing my teeth, which also seemed to be related to sinus congestion from a very dry night's sleep.  A humidifyer helped that but being sure to clear the congestion before teeth brushing helped.

EW! There are some really gross aspects to this therapy but they are real challanges, especially when you are in the thick of it.  Hang in there, this will all pass AND just when you think you've got it down, it will change.

Margo wrote:

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Sour stomach meaning heartburn?? If yes, that's what I have and Zantac once daily 120mg works wonderful.

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davesf wrote:

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Is this your first time treating (naive)?  If so, you may be eligible for 24 weeks but you have to be undetected at both 4 weeks and 12.  Your doc may be telling you 48 weeks until your labwork proves different.  Here's the info from the prescribing page of the Incivek website.

All the Best,  Dave

---

Is this your first time treating (naive)?  If so, you may be eligible for 24 weeks but you have to be undetected at both 4 weeks and 12.  Your doc may be telling you 48 weeks until your labwork proves different.  Here's the info from the prescribing page of the Incivek website.

All the Best,  Dave

I know OH TOO WELL what that fire in the hole is. Only thing that worked for me is destitine (sp? - the diaper rash stuff) and eucerin. Mixed. An uncomfortable amount. WATER WATER WATER WATER.

God bless, 

Mike

Oh another question, because I was undetectable at week 5 is it normal for my doctor to want me to go the full 48 weeks on the other two drugs now? That is what he said.

Thank you Alan and everybody who reads this and posts.

make sure you are taking incivik with at least 20g of fat...my doc said that helps the absorption and helps with the burn.  You might have it anyway though.  I did the interferon/riba 12 years ago and it was bad.....before it was peg so I gave myself 3 shots per week.

The first 12 weeks of treatment this time around were much worse but after ditching the incivik treatment is much easier. :)

Well this mornin was pretty bad...again the fire. I have noticed that the first time I go iam not that bad but the 2nd, 3rd and sometimes 4th times I go is when it becomes really painful. Iam greatful I seem to only go in the morning. My pattern since last Wednesday has been this. Wake up at 530am, feel nauseous. Struggle to put down 20g of fat. Take pills for the telaprevir and the riba. Bowel movement. Lay down for about 20 mins then have to go again...lay back down and this repeats till about 9-10am. Very painful. Start to feel better by about 11. Between 12-3 I feel as close to normal as possible. Around 3:30 pm is when the itching starts and I start to break out in a rash all over. Mostly my back, my arms and legs. I deal with it until I go to bed. The process then starts up again the next day. I been using the zinc cream to control the itching and rash. Been using baby wipes and prep h. Just hoping I can make it through. Katie in my prayers for you to make it through two more weeks of the torture. Alan is correct Katie, I was on the peg and riba the first time 3 years ago. I was undetectable after I finished my treatment. I remained that way for 3 months. On the 4th month post treatment my doctor called and gave me the disappointing news. It had come back. Both he and my hematologist were both surprised as I responded so well.

-- Edited by xtreme on Saturday 31st of March 2012 04:14:01 PM

-- Edited by xtreme on Saturday 31st of March 2012 04:20:27 PM

-- Edited by xtreme on Saturday 31st of March 2012 04:22:47 PM

My standard has become amodium a.d. twice a day as I never have the fire unless I have the diarhea.  I guess that's why many peeps refer to it as the Fire-rhea.

Hello again, Katie

xtreme is referring to a treatment with only pagasys and ribavirin, which didn't work as well as the triple therapies do now. There are a few doubles around here, particularly for geno 2 and 3, but most of the geno 1a and 1b folks seem to be on triples, and as long as their poor bodies can take the beating, most are succeeding.

Alan

Welcome to the forum,

How could that happen? virus was cleared then later it came back? so no guarantee that virus UND means HepC is cured?

I am sorry to hear that you have experienced that bad side effect every morning. Call Pegasys's Nurse Support to see if they have an idea to help you. #877-734-2797.

I am on week 10 now and VL week8 UND. I am struggling every single day with insomnia and itching. Other side effects are nose inflamation, no appertise, numbness in my fingers and toes. i went to emergency rooms 3 times so far because of reverse reation toward sleeping pills, and pain relief drug (Motrin PM and Lorazepam). I can sleep only for 3 hours, some night 0 minute. I don't know if I can survive for another 2 weeks of Incivek. 

I wish you will be cured 100% this time.

Katie

thanks for all the replies...I'll do all the recommended steps.

I find witch hazel to be very soothing on the burn.  I soak an unscented baby wipe with it and wipe very gently.  Pure aloe vera gel helps, as does Weleda calendula diaper cream, which I apply before and after each go-round.  I have been lucky in that I don't have a bad time everytime I go but when it is bad, there's nothing worse!

pamigo wrote:

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xtreme,

had/have exact same issues...

what really helped me is starting taking orange flavored metamusil multi healt fiber. I take it once or twice a day inbetween inciveks as not to absorb any med. It firms things up and u dont have to strain as much.
also a good dab of prep h to work around just before going works wonders and after going.

I wake up early at 4 am to start treatments including shot, which i do on Fri morn. It usually lets me sleep a little more in the morning and etc. also it lets me eat lunch and dinner at relatively normaly hours with work and dinner. and i can eat the fat at meals instead of inbetween.

pamigo

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  Burn baby burn. Sometimes I gotta laugh so as not to cry. It's a painful deal. I'm at the end of week 4 today, shot on Friday. 6:30 AM riser to eat a little fat and start meds at 7. Last dose is 11 PM so I get to watch a little Letterman and do it all again.

Prep H wipes, clean, clean, clean, hydrate, hydate, hydrate. That's the combo so far for me.

So I did a round 3 years ago of just the Pegasys with Ribaviran. I cleared my Hep C but in the very end after treament was over, it came back.
This past saturday I started treatment with Telaprevir. Compared to last time...this is kicking my butt...literally! Everyday side effects. Last time I had some but they were more manageable.
I wake up every morning at 5:30am to take my first dose of Riba and Teleprevir. I feel sick till about 10am. During that time I have diarrhea. That is when I first experienced the "fire in the hole". When they say minor to moderate irritation, I think what they really mean is...fire...and glass shards...cause it hurts that bad. I called and explained to my doctor that I even have some bleeding going on from that area and believe it to be associated with it. I figure hemorrhoids cause the bleeding only happens when I go and is bright red. The nurse gets back to me and says "it is all part of the treatment". She says the doctor advised me to pick up some Bordeax Butt Cream to help. I had already gotten Prep H so have been using that and it seems to have helped but only a little.
Anybody have any tips? I am not even a full week into treatment and really would like something to help with the pain of the anal problems and something to not make me feel sick for 4 hours every morning.
I find myself a very strong person with a high tolerance to pain. I have been cut, burned, have had a liver biopsy done...all child's play when compared to the pain from just having a bowel movement in the morning. I push myself on saying "mind over matter" to try to get through the day and just think of treatment as 1 day at a time.  I been sweating though and nervous when I wake up  now cause I don't want to feel sick and don't want to "go".

wow...it stays for the entire 12 weeks huh!?! Oh man...ouch. I was so hoping you were going to say it got better after a coupe of weeks.