Hep C Discussion Forum

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.

-- Edited by xtreme on Thursday 24th of May 2012 12:50:06 AM

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

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.

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

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?

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

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

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!

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.

-- Edited by xtreme on Thursday 10th of May 2012 04:22:44 PM

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.

 

 

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

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.

-- Edited by xtreme on Tuesday 8th of May 2012 06:19:28 PM

I had a few days like that around weeks eight, nine and ten. The only advice I can give is take Tylenol for the flu feeling (I used half the recommended dose, half as often), drink loads of cool water or other good stuff, like fruit juice, uncaffeinated sodas, ginger ale, etc. and stay in bed. The week before Christmas (that was week five) I spent nearly the whole time in bed, too tired to do anything but go back and forth to the bathroom. The elevated blood sugar is normal, I think. It hit me, too, but not high enough to treat. Just noticeable. I assure you this will get better. But I can't suggest much in the way of relief. Alan

Thank you Alan and everybody who reads this and posts.

Well I just through everything up. Not good. Now iam worried for tonight...called my doctor to see what he says about what to eat when I can't keep stuff down. What do you guys do?

-- Edited by xtreme on Tuesday 8th of May 2012 01:52:48 AM

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

-- Edited by xtreme on Saturday 31st of March 2012 04:23:52 PM

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

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.

 

 

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

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".