Hepatitis C Community
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Avatar universal

Just about to begin...any advice?

Hi Everyone.  This is my first post.  I'm going to start the tx next month, and am a little nervous.  I'm in my early twenties, but have had the disease since birth most likely (got it from my mom).  I'm about 6 months into a new relationship, and don't really want to mess it up by getting completely depressed, sick, etc.  I'm hoping to handle this thing as well as possible.  I'm wondering if anyone has any advice on good things to do (medicine, lifestyle, etc.) when you're beginning the tx.  Also, has anyone else ever tried to maintain a vegan lifestyle while taking the pegylated interferon + ribavirin?  My doctor says I may have to go back to just being a vegetarian, but I'm hoping to stay vegan.  I'd really appreciate any feedback. It'd be good to have advice from people who know what's really going to happen.  Thanks.
16 Responses
91778 tn?1252558770
Hi and welcome.  Take a multi vitamin without iron, drink lots of water, they say half your body weight in water every day. get lots of rest and try to live a normal life. Laugh a lot. You are young and will pull through just fine. Keep coming back here for support. Like mremeet says take riba with some fat. Hand full of nuts maybe. I agree with susan, Just take it one day at a time. Deal with the side effects as they come. Who knows you may not get many. And always think positive. You can beat this this!! Take Care, Debi
Avatar universal
Hi there, I have been on the tx (treatment) for 15 of 48 weeks. I did not do my first post here till I was one month into the treatment and my sx (side effects) were kicking my ass, but I was still getting up and making to work. I found myself pacing myself on all my daily duties and I mean all. It was easier for me to do the majority of my hygiene at night due to the sx of insomnia. I scheduled my outdoor chores in the cool of the evening. Understanding co workers have made my job doable. I guess the bottom line for me is there is a trade, feel and deal with the sx for having a chance to rid my body of this harmfull disease. I'm disccovering many things here on the forum. The most valuable is knowlege arm yourself with the facts. Share with the forum your biopsy results, genotype, plan of treatment, your baseline viral load. When and IF you have any sx come here and research what others have done to cope. You can do this treatment simply by putting one foot in front of the other and do the do's and don't the don'ts.Good luck and best wishes.
Avatar universal
good advice on forcing yourself to excersize. many of us got an overwhelming fatigue not to mention rash, irratable, headaches and brain fog(you may forget her name).
it may be hard to keep a new relationship going as many feel like we do not want to visit with anyone during tx.
what stage was your liver biopsy???did you have any affects from the hep???
good luck,hate to scare you.
107513 tn?1232290064
I'm 29 now, but tx'd when I was 26..I was also infected by my mother.. Tried the first time and was just completely unprepared mentally for what tx entailed, and was pulled off the meds almost immediately.
My second go round was with Pegasys, and I went 48 weeks and cleared. I am now cured, by medical defintion..
Vegan, that just isn't gonna cut it. You really need to eat fatty foods with the riba for it to absorb better. Lots of memebers recommend Yogurt, or something similar. You also need lots of protein..I was told to double my protein intake, and towards the end of tx, I was tripling it just to keep my body from canabolizing anymore muscle.
Tx is very doable, as I worked almost the entirity.. I missed a total of like a week maybe of work the whole year. You need to drink tons of water, and rest when you feel your body needs it. Believe me, you'll know when to rest. Also, sunglasses are a must. Most Dr's ask for a pretx check up with a Physc... I highly recommend it.Depression is a serious thing, and I was hit hard the first go round cause basically I felt I had failed, and was now destined to die. See, I was told I had stage 3 fibrosis, and if I did nothing about it, I would be looking for a donor liver within 10yrs. It was just too much to deal with at my age.. Make sure you are VERY comfortable with your Dr, and his knowledge..If you question his abilities or knowledge now, look elsewhere.
A good Dr is the key to your success.. Take it from me, I have consulted with 4 or 5, two of which are at the top of the list.
This is your life, make decisions based on what you feel comfortable with, not just what your Dr recommends. Ask tons of questions, and do double the research.. Members here use to make fun of me cause I told them that during my initial DR visits, I took printed articles and studies in a briefcase with me to the DR, and I racked EVERYONES mind for months. I wanted to know EXACTLY what I was getting in to, and I feel that was one major factor for me successfully completing tx.
I wish you the best, and remember to ask questions..The more you know, the more comfortable you will be with this major decision.
By the way, what is your genotype, biopsy results, etc?
Avatar universal
Avatar universal
Welcome!! I am fairly new myself, working on shot 4 Thurs. All I can say is that listen to the advice here, especially about the water thing...THESE FOLKS SAVED ME!! ( 1/2 your body wieght in oz. daily) and TAKE THE PAIN MEDS 1-2 hours before your injection, and try to eat fatty stuff w/ the riba...all these things I learned here first (first post was 1 week prior to tx..thank heavens!) then asked my Dr. if it was true...ALL WAS!! He just didn't get around to telling me before these invisible friends and angels of mine...and now yours too!!! :)

Again welcome to the forum!
151263 tn?1243377877
I just started treatment myself, so I can't really offer substantial experience based advice yet. But I do know you should drink lots of water and by all means take your pain relievers (i.e. Advil, Aleve, Tylenol etc) at the same time you take your shot. Don't wait and take them later. Dont ask how I know this!! lol And I'm not very familiar with vegan diets, but you are supposed to eat something with fat in it before taking the ribavirin (aids in digestion/absorption). And the treatment can curtail your appetetite and in some cause substantial weight loss. You might have an easier and healthier time of it by adding some flesh into your diet, but that's your call.

Anyway stop by often and good luck with your treatment. I'm learning it's one strange game man!!
Avatar universal
I've never done the veggie diet thing, so I can't answer you there.  I'd say, 'just take one day at a time'.  That's my motto in just about everything in this life.  If you plan too far ahead and then, you have a day which gives you a lot of sides, then sometimes you have to change the plan.  There were quite a few things that I could not handle on treatment. Everybody is different though.  Many people can work on treatment.  I did in some of my earlier treatments.  But, it got to a point by about the 3 or 4th time of treating that I could no longer handle working.  My brain was not working right for staying on task and/or learning anything new.  But, this does not happen to everybody, so don't go by that.  In MY case, after doing this lot's of times, I found that making myself do light exercise, such as taking short walks and such, helped me with the muscle aches and joint pain.  I found the sides worse when I didn't drink enough water.  I never had an appetite, especially at lunchtime, but I did force myself to eat several different light things such as nuts, a bowl of ice cream, a bowl of soup.  Usually, by 5-6 pm my appetite was a little bit better so I ate a better dinner.  I tried to keep in touch with my family so that I didn't get too much into the isolation mode, since I live alone and didn't work.  Well, I'm sure that there are others who have advice to offer.  Take care.  By for now.  Susan
Avatar universal
I recently finished 48 weeks (so far successfully). The Advice I have is DRINK TONS OF WATER. As stated above, it made a big difference in how well I tolerated the tx on a day to day basis. Also, get plenty of rest. Best of luck to you.
Avatar universal
I recently finished 48 of 72 weeks. Like rearfang and others have said stay WELL HYDRATED - these meds will really dry you out and that makes the sides seem more severe for some reason.

Don't be afraid to ask questions, no matter how stupid they seem. You wouldn't believe some of the things I've asked! :) Also make sure you get hard copies of EVERY test result you get and learn to read them youself. This will end up perhaps saving you a LOT of pain and aggravation!

The more you learn about this disease the better off YOU can advise your doctor on things. And believe me THAT is IMPORTANT.

Don't be too afraid, some people have absolutely NO side effects when they get started!

Best of luck!
Avatar universal
Welcome to the forum.  You are young and should do well.  Ribavirin is absorbed more if taken with fat.  However, you can do it without fat- you will not even find that in the drug papers. I think you will just have to play this by ear.  If you feel well maintaining your vegan diet, continue.  If you don't you may need to make adjustments in your diet.  The people here are fine and we are glad you found us
132578 tn?1189759437
Run away from here as fast as you can and dont look back. Its a trap and you'll get sucked into it like the rest of us. Save yourself. JUST KIDDING!!!!!

Good morning drinnian and welcome. You have definately come to the right place. Just a couple of the things that I feel like have impacted the way that my body reacts to the med's , WATER.
You'll here it over and over again. Drink plenty of water. I believe that you are suppose to drink 1/2 oz of water for every pound you weigh. The meds are going to try and completely dry your body out. Not only is dehydration very uncomfortable in itself , it make the side effects from the med's worse. There is a huge difference in the way I feel a couple of days after my shot if I have been drinking enough water or not.

I would also recommend learning all you can about the disease and the treatment. Keep up with your blood tests , always get copies from your Dr.office and visit here as often as you feel comfortable with. We are all , or most of us , currently going through the treatment and someone here can probably answer most of your questions or direct you to where you can find the answer.

Good luck , You'll do fine. Here are my stats:

49 yr old male in Dallas area.
dx fall of 2004 after life insurance exam.
Infected 1975
HCV genotype 1a
Initial VL 2.2 million
bx spring 2005  grade 2 stage 3.
Started .5 ml pegintron and 1400 mg ribavirin March 2005
Hemolytic anemia early on. Started 40,000 units Procrit late April 2005
HGB maintaining 11.5-12.5 .
2 log drop at 12 wks but not UND
UND at 16 wks . Extend treatment 4 wks.
Just completed shot 22/52.

My Dr. is Monty Trioutman at University of North Texas Health Science Center.
Avatar universal
hi, all i can say is to rest when you need to, and if you possibly can - go for a halfhour walk, and eventually build up some form of exercise, i know u probably dont feel you can do this right now, but believe me, when u finish tx, you will wish that you had done and pushed yourself to do some exercise and eat properly and drink plenty of water because the flab starts hitting after tx and you have loose skin where muscle used to be, hence, depression.  So, whilst on tx, try every day, please just do it, its the only way.

Post tx, well, if you havent exercised, you loose all that muscle that you had, and you become flabby, over a period of time, then u loose confidence etc.
Give it a go, day by day, slowly, and get it together no matter how you feel. If you miss a day, dont matter, you tried, start again the next day or whenever you feel you can.
Delve into every research that you can find on hep c and educate yourself, and if you cant cope on a day, drop it, pick it up when you feel like it.  
No rush, take your time and get through each day and learn.

Avatar universal
Good to see you. Im glad you are still feeling good. Im hitting the 48 week mark out of 72. Wish I didn't have any sides! I guess some just do no matter what we eat. I was wondering if you know of a good protein powder that doesn't have refined sugar in it? Im having a heck of a time finding one can you reommend one?
132578 tn?1189759437
Hi Rocker... Good to see ya.. I hope all is well.
( in so far that that is possible at this point)
Avatar universal
Hey that is sweet of you, thanks for asking her. I will take your suggestion and see if I can find a place like that. I moved south from Nor.California and there you can buy everything from bulk bins it's great and there are lots of CoOps but down here it is a different story so mail order will be the way to go. If she does send it, I'd like to try it. Sounds like a great price.
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