Newby starting treatment next week

[katora]

I am supposed to start treatment next week. What can I expect? How does it affect the majority? I have 1a. Anything that can help me get through it?

[sfbaygirl]

Just want to say that I was so relieved once the first shot was over. At least I knew what to expect. The first was the worst and it was never as bad after that.  The sx changed, came and went.  I was strong and diligent in my tx. No matter what, I put up with the bad and looked forward to the good, that helped me. I stayed clear after week 12 through 47 weeks. It was my job and was proud to keep myself going strong, even though I felt weak.  I didn't make it to week 48, I planned on 72 weeks.  Hoped I would SVR anyway, but kinda knew I wouldn't.  I relapsed at 6 mos. post tx.  Tough road, but I was proud of myself for doing what I did.  I now don't know if I want to tx again. I have minimal damage and would like to see some real progress in the tx of Hep C before I do anymore damage to my body.

Hope you all know how much damage you have and are sure you need tx now. If you have a low stage like 0, 1 or even 2, you should know that some of the sx's can affect you alot and cause more damage in the end. I hate to bring bad news, but as a stage1 myself that went 47 weeks of tx, I do feel worse than I did before tx. Please read some of the post tx threads here on the forum. I don't want to scare anyone, but be aware of what you are getting into before you begin tx. If you have minimal damage, perhaps you should wait for some less toxic drugs before you tx.  I have a lot of sx I would have never  gotten had I not done tx. Granted, I probably have done my liver good with the tx,  but I relapsed and have lifelong problems to deal with now from tx. Be sure you need tx now and get the top notch doctor there is for Hep C.  Sorry to scare anyone, but feel you need to know there are big risks with tx and not start  just b/c .

[Lady Lauri]

" brain for".sets in....brain FOG! Have it before tx, worried about that!!  :}

[Lady Lauri]

Hi Katora. I've been on this site @ 2mths. now and can't stress that it's helped me more than any other reading/research, etc. in all this.These people-fellow heppers- are so much help, even with brain fog and all thier own struggles. There's tons of tips on how to get thru it here.
  I also haven't started tx yet (next week :{.....but like you, was terrified, now just really scared :} about that 1st shot, sides, fears and so on. Reading so much here has helped HUGELY! And I haven't even touched the tip of all the post here! it helps so much to hear and 'talk' to others IN my shoes. There is so much expierience here. just keep in mind that many have it hard and many don't so , as we all tend to do,  don't dwell too much on the worst to be expected and hope for the best.
I don't have enough time to read and post as much as I want here and just briefing thru here tonight, BUT, if I understand right, you have no biopsy (bx) yet , right? I feel that is a must in all this even being new in this, but from reading all these people say also. The bx is nothing... I said " is that it? Your done?" And I had no sedation, only a local at the site. I can't understand why any Dr. would start, suggest tx without a biopsy with all the newer drugs that will/may be out in just a few years. (more tolerable, less dosing, etc.). (as jmjm said that I just read:)! If I was not stage 3 fibrosis, I would wait! THAT is what made my entire decision to treat now. And sooo agree on  hepatologist rather than a GI. Anyhow, read a LOT, (especially here!) research, get more answers, you'll feel better. Especially with other health issues. My 2 cents and I hope the best for you in your decisions.

Goldenrule...very much agree with you about sitting around versus keeping busy, as I have used this already to not think too much now! Went and got a laptop so I can keep my mind busy even if in bed a lot! brain for sets in, there's always spider solitaire :)

  wishing all a 'feel good' day .......LL

[nygirl7]

I was pretty much a single mother too, did 72 weeks treatment and only took 3 sick days when they anemia got very very bad.  I found that as long as I rested a LOT on the weekends (staying in bed as much as possible) and got as much rest as I could I could get myself together for the week upcoming for work.

It sure wasn't always easy but if I could do it, you can too.  I have a heart murmur too, it didnt affect it at all - excepting the anemia symptoms.

Most of us find that the symptoms or side effects come and go at different times. For example I never got the "flu" feeling at the beginning of treatment...I didn't get it until about week 30 but I did get drastic anemia at about week 3 which most don't get until a bit later.

So you can't really tell how it will affect you at all except to say get ready to be tired, really really really tired. That is one thing that is definitely common with all of us. And for most of us no sleeping at night either and major dehydration.

Make sure you doctor WILL prescribe rescue drugs (ie: Procrit and Neupogen) as they will help you alot.  Drink alot of water and rest as often as you can. PS Make sure you get a hard copy report on EVERY SINGLE TEST that you have done.  As you learn to read all the numbers you will eventually see how this is so important.

Good luck. without this forum I wouldn't have made it thru.  No doubt. You'll find some of the most loving caring decent people in the world in here and anybody would do anything they can to help you.

[debnevada]

Adie, i had to laugh.  I think I get that you do massage or pressure point, chakra or reflexology type stuff and I'm totally down with that, but...

when you wrote "I'm a bodyworker" ....well.....hahahahahaha
living in vegas, that means a whole nother thing!

cracked me up.

Also, I am asking your for some advice.  If i lived near you I'd come and pay for your expertise.
It seems I have a pinched nerve that is coming from my spine into my right arm on the pinkie side. Burning pain shoots down frequuently.  Since the doc's fix will be steeroid injection which i can't take or oral steroids which I want to avoid, anything more natural that I can try?

Deb

[GrandmaA]

I worked 33 weeks on treatment and then retired. I'm a bodyworker and I will resume doing that part time from my home in about a month.

[katora]

Thanks for the advice. Any other little tricks to help?

[GrandmaA]

The biopsy isn't bad at all. It's very quick. And you will know what stage of liver disease you have. Without knowing that you don't know if you should treat now or if you can wait for the new meds. If you are a stage 3 or 4 you better treat. If you are 0-2 you can wait.

Good luck. You have come to the best forum. You will get lots of good advice and support here. They helped me so much throughout tx. I just finished last week. I'm 65, genotype 1a and stage 3.
I had no problem with the first shot. Insomnia was my biggest problem. Also, the riba gave me nausea it works better if you take it with fat. I had 8 almonds in the morning and ice cream at night. I lost 17 lbs. on tx. so they dropped one riba pill because it's weight based.

[katora]

Thanks for the kind words. You sound sweet also. 50 is not over the hill either!!!! Did you have a lot of symptoms? I am scared I won't be able to deal with my kids when I am sick. I have one heck raiser and she is the youngest. If I can keep her out of trouble I will be doing good.

[lanier]

so sorry I see u posted ur age, your young.  and you have 3 children wow what a blessing.  teenagers can be a hand full.  I have only one child a daughter who is now 16 and is mad as heck at me for being ill.  I see you stay active with them that is great.  I am lucky to live in a neighborhood where my daughter has lots of friends and she is busy going places with them.  I think you may reach a point where you want the biopsy to "know"  it may help with the fear, you will have a real result and can deal with it accordingly.  Your call.  Life is too short to work 60 hours with a brand new liver LOL  you work for your kids, your strong.  
I like that post that said READ...great advice.
Lani

[lanier]

you sound so sweet.  how old are you, I think your young.  not over the hill like me.....50 and you have a great boss, 2 positives to focus on.  See the end not the start, I bet you will be a stellar client and manage, process the positives.  how long is your treatment?  look at your calendar and plan what you'll do when your finished, with a great boss, maybe you can get a week off after and have a holiday to reward yourself.  good luck
Lani

[katora]

I am genotype 1a. I really don't want to have a liver biopsy and my doctor said it wasn't necessary. He is a GI. I am so nervous. I don't know what to expect. I don't remember what my viral load was but it was high. What percentage of people get major symptoms? I am nervous about being able to continue to work without too many issues. Luckily I have a great boss who is willing to work with me.

[lanier]

Good Luck

do u know ur viral laod or have biopsy results?  I hope you a young lady.  best wishes

Lanier

[sfwandwow]

p0lease get liver biospy to see where u are at? thats is really important

[bratb1]

Hello, I think it is very imortant to have the liver biopsy prior to making a treatment decision.  After I had my biopsy and met with my hepatologist he recommended that I not treat at this time. I am 39  and have had it about 20 years. My genotype is 1a
Take good care

[jmjm530]

Do you know your genotype? If you're a genotype 1, you really should have a liver biopsy prior to treating, or for that matter prior to making the treatment decision. Are you seeing a liver specialist (hepatologist) or a family doctor or GI. Most liver specialists would suggest a biopsy before treating unless they had reasonable clinical certainty to the amount of liver damage you have.

Knowing how much liver damage you have not only gives you more information pre-treatment, but it also can help guide how agressively you decide to treat once you begin.

You should also know that there are newer drug protocols in trial now that promise twice the cure rate in half the time. If it turns out you have little or no liver damage, you might consider waiting for these trials.

All the best,

-- Jim

[shastri20032003]

being nervous about the first shot is normal...it would not be normal if you weren't nervous!
My first shot  gave me the chills and a slight fever
I am single father with two preteens and I worked throughout treatment without missing a day,though I must admit that I reduced my working hours from 60 hours a week to 40 hours a week
Wishing you the best

[katora]

Thanks for the info. I am real nervous about the first shot.

[goldenrule]

i am also a single mother of two boys, 11 and 2 and.I also work a desk job  i was able to continue to work throughout, calling off only when it was necessary. I found for myself that sitting around doing nothing made my side efffects more severe. It is good that you have your kids. Its amazing how much strength those buggers pull out of us. The first shot is the most intense beceause of not knowing what to expect. I ran a small fever, had the chills, and felt run down the day after shot. rested up on day 2 after shot and then went to work on day 3 after shot. You are young and i expect that you will react well to the medicine especially if you have no liver damage..
Best of luck to you and your family
Keep us posted on how you are doing
Most importantly,  READ READ READ!!! There is so much valuable information on this forum.

[katora]

I am 36 years old. I am a single mother of teenagers (3). I found out I had it in 1998. My doc decided not to do a biopsy. I didn't want to either. I already have diabetes and a heart murmur. I had hep b also. I will try to continue to work hopefully. I sit at a computer all day and read airplane technical orders. I have some support from family and friends. I appreciate all the help I can get.

[goldenrule]

did you have a biopsy done? How old are you? Everyone responds to treatment differently. But most say the first 6 weeks are the roughest. Will you have to work during treatment? Alot of factors play into how one will respond.
Let is in on a little of your history
Welcome to the board