Started Treatment Today

[Reidmusic]

I started treatment today with my first shot of PegIntron. I start taking Incivek and Ribavarin tomorrow. Just thought I'd check in and I'm sure I'll have some questions along the way. Maybe I'll even be able to answer a few.

[Reidmusic]

GMJ, thanks for the details on water consumption. I'm going to stick to a gallon a day for now since it's working.

skiyaltr good for you on getting to wk 38 and working at what must be a demanding job.

I don't want to jinx myself but so far my side effects have been mild. I've been eating approx. 30 grams of fat per Incivek dose comprised of real foods as much as possible. I'm staying away from ice cream, candy, cookies, and other sweets as much as I can. I'm eating avocados, Vienna sausage and other franks, cream cheese, nuts, trail mix, and Boost Plus at night (with 15 more grams of fat from foods). My theory is that these more solid foods will help with absorption more than the sweets and my stomach is less likely to be upset.

So far no burning butt syndrome which is one of the side effects I dreaded most.

Maybe the big purple pills have just not gotten into my system fully or are building up their reserves so they can pounce on me all at once. If so, I will be ready for it mentally and you people are helping me to be brave.

[skiyaltr]

Best of luck to you.  Tonight is shot 38 and I was on incivek.  All the above is accurate.  The 12 weeks were tough but I was committed; the rash slowed me down in the last 3 weeks, but as soon as the incivek was done, the rash cleared.

I worked throughout treatment managing a 50 person back office facility.  Not too much oversight from above and my staff were very supportive of a flexible schedule.  I have to work when I feel best.

Continue to exercise when you can; you will scale back, but keep moving.

Will be looking for your progress posts.  Lot of very support people and good information on this site.

[Grandmajane420]

I was drinking under a gallon, I started drinking about 1 1/2 gal. you can tell by how your body reacts to it I got so bloated on too much, and the color of the urine keep it as pale as you can stand, I was going to the potty every hour or sooner and when I cut back I was able to go to about 2 - 3 hrs. I'm 84kg. LOL I'm not shy :) I never tried the humidifier at night but I bet that would have helped the really bad dry mouth at night, I did use biotene once in a while.

[Reidmusic]

Malina69, Welcome to the forum. I think you'd get a better response if you posted a new question. Go to your personal page and look for the blue letters that say "Post A Question." Just want to help you get as many answers as you can.

Congratulations piglet & PJ and thanks for the tips. Like your "HCV we will defeat you" quote James.

[Malina69]

Hello everybody I am new here.. Was diagnosed with hep c many years ago. Now I got a fatty liver and mildly enlarged spleen. I read somewhere that treatment would not work until I get rid of my fatty liver. Anyone experience something like this?

[PJ1966]

Good luck on your treatment.  I am in week 5 of incivek and undetected at week 3 (hoping for undetected at week 12 also so I can stop at 24 wks).  I feel like I just started and I'm already at week 5 so it seems to be going by quickly (although not as quickly as we all wish).  I was drinking a little more than half my weigh in water daily and started feeling a little off.  I started adding about 2 oz of cranberry juice to my 16 oz of water and all of a sudden, I started feeling better.  my hgb even stabilized.  I'm not sure if this is in my head, but it was like my electrolytes were off.  The doctor said to keep doing what I'm doing if it makes me feel better.  I feel better is all I know.  It's a little weird, but I'm going to keep doing this.
Anyone else have any input for this concept?

[James10500]

Good luck!!!!  

[piglet222295]

I finished incivek sept 12. While I can say it was a very long 12 weeks and I got to a point that I hated food, I am glad I started treatment.  My viral load was 4 1/2 million when I started.  at 4 weeks it was 5 at 12 weeks it was negative. Now I hv 33 weeks left of pegasys and ribavirin. I can say its a tough road but you can do it with plenty of rest and fluids. U will probly gain weight from fatty foods but u will lose it. Just hang in there. Write it down, it helps!

[Reidmusic]

Thank you for your help and tips on the water intake. I drank over a gallon yesterday and will try to keep that as my benchmark. I was on the stationary bike for 40 minutes and that helped. I'm shooting for 25-30 grams of fat with every dose of Incivek. If I gain weight, I know I can lose it once the 12 weeks are over.

I will post for help when the side effects start hitting me.

[pooh55811]

As far as water, my doctor said to drink  a gallon a day, and I did. I measured it and lined up the quarts. 1 quart in the am, 1 quart in the aft., 1 quart in the eve, and the other quart dispersed through the day. Plus, I did not count the coffee or anything else I drank, like broth. Then, I also drank extra during the night. I was peeing every half hour it seemed, even at night, and I was dry as a bone. So every time I went to the BR I also drank a bunch of water. The drugs make your mouth feel parched.

If you are feeling okay, that is a good sign. Maybe your side effects will be mild. There is no way to predict, though, and they change from day to day and week to week. If you start getting bad side effects, post here and we can help. It is imperative to get on top of the side effects immediately or they can and will snow ball out of control.

I think your attitude is great. Keep active and hope for the best. Some people have few sides and mild sides. Maybe you will too. Best of luck.

[sadmommyjoy]

Congratulations!

[Reidmusic]

Thank you for the info on your water intake. I've read some of your posts and you've really been through a lot. Everyone here is like a survivor on a ship wreck. Congratulations on being UND.

I still feel pretty good but I know it's too early to tell how it's going to go and the drugs are just getting into my system. I just called a lady who started a week before me and she's going through hell.

I'm not going to sit around a wait for the bad side effects to come but I'm preparing mentally for the raging storm that may be brewing.

[LookingForward12]

Welcome to the forum. But most importantly welcome to treatment....

You are in exactly the right place. The collective wisdom and caring you will find in this Forum is incredible. When you have any type of question, do not hesitate to post it. I don't believe there are any taboo subjects here...and male or female doesn't matter.

At the height of my water drinking, which was actually was a little more while on Incivek, I was drinking eight bottles a day. I weigh 132 now....gained to 146 while on Incivek, but am now back down to my ' normal' weight. This was in addition to drinking other things like juice in the morning, whole milk with my meds, etc. Even when I was sleeping on the sofa so as not to disturb my other half, I kept a bottle of water beside me. Whenever I woke up I would take a couple of swallows.

I STAYED in the bathroom it seemed. I am three months post treatment and am just now beginning to have the odd uninterrupted night of sleep without having to get up to use the bathroom.

Good luck with your treatment. It was the most difficult thing I have ever done, but I have been UND since week 4 and moving to SVR!

Oh....and I lived in this forum for six months.

[Reidmusic]

Thanks for the perspective on working.

Grandmajane, how much water is too much? Everyone seems to say to drink a lot and it's now 3:00 p.m. and I'm on my sixth bottle of water (16.9 ounce). I'm sure before the day's over I'll hit ten bottles for a total of approx. 170 ounces. I'm purposely drinking more than I normally do, and it is a hassle running to relieve myself all the time. I know it's different for everyone based on body size and reaction to treatment, but how much water did you find worked for you and how much do you weigh? I know I'm never supposed to ask a woman that so feel free to decline answering.

[working dog]

if working means you have to cut back on the ribas to bring up your hgb then i wouldn't work...try to treat once....i thought i would be working throughout tx but no way...after the first week i was toast...low hgb and in bed most of the time...but lots of folks work right through tx...just do the best you can to stay with the program....symptoms change as tx moves on... incivek can be tough..theres lots of help here...

[Grandmajane420]

I worked thru treatment part time. I was careful never to have anything scheduled the day after my shot as that was the worst day for me. There is a fine line between drinking enough water and too much water. I found if I drank too much it would cause me to have worse trouble with my digestive system, bloating cramping and heartburn. Not enough and you can tell cause you get so dry you can't swallow. Some sx would go away after a few weeks, like the rash and sun sensitivity. Brain fog was a real challenge, sometimes I would forget what my husband was talking about 1/2 way thru the sentence and I couldn't always find the right words to explain things. If you changed subject before I had a chance to calculate I would be totally lost, "What are you talking about Now!!" LOL
I just ended triple tx. So far UND!
Good Luck :)

[pooh55811]

A lot of people continued working during Tx. Some cut back on working, worked part time, used sick days or vacation days, or leaves of absence. Some people could not work during Tx. It just depends on the side effects. If you can keep the side effects under control, and have milder side effects, you may be able to continue working. You will just have to wait and see. It would be advisable to have a Plan A in place (working) and a Plan B in place (what you will do if you cannot work). That way you will have some planned options instead of getting broadsided if you cannot work.

With any luck you will have nild side effects. Keep us posted.

[Reidmusic]

Thank you all for the tips and for your support. I slept okay last night after the first shot. Today I start with the pills (Incivek & Ribavirin). I'm hoping I will not be so sick that I have to put my whole life on hold...but I'm preparing for the worst.

Were most of you able to work or did you have to take time off from the job?

[willbb]

Welcome to the zoo and feel free to ask anything you might be concerned about...

Good luck with treatment...

Will

[working dog]

a pill organizer is very helpful....you have to take the incivek on time...don't miss a dose...also make sure to eat the 20 grams of fat.....my first shot was the worse as far as fever goes...if your hgb tanks in the first couple weeks take it easy...anemia can be a good thing for svr...get blood work at least once a week(cbcs)....maybe let the folks close to you know that tx can be tough and you may say or do things you wouldn't normally....look into zofran for nausea.. to get enough water down i used a wide mouth h2o bottle from walmart(blue about a buck)...i just couldn't get enough water down with a regular water bottle and in a glass was too messy...i would have a good humidifier in the bed room...good luck the incivek works great.....billy

[1swimmer]

Also wishing you the best on tx. I certainly hope your side effects are few. Keep up with the water and keep your skin moisturized. Lots of good people here with hands on knowledge.
Cheers,
C

[pooh55811]

Congratulations on getting started on treatment. It is great that you were able to start so soon. Several of us were on Triple med treatment with Interferon, Ribavirin, and Incivek. If you have questions or side effects, just post and we will respond. We have remedies for many of them. Best of luck.

[Idyllic]

Wow no grass growing under your feet! I mean you were diagnosed only months ago and here you are on treatment already! Best of luck to you :)

[orphanedhawk]

Welcome, good luck and ditto to belle's good advice.