Anybody have any positive experience with tx?

[Missy4306]

Newbie here.  I am starting Peg-Intron/Ribavirin tonight and dread it like you can't believe.  I am Geno 1, stage 3 and "trending rapidly to chirrosis" as the doc put it.  My hubby is blind, I am the one working and taking care of everything so the thought of being down for the count just terrifies me.  All the posts regarding treatment seem so negative... has there been anybody who has been able to maintain a pretty physically demanding job and active lifestyle?  The doc said hydration would keep the side effects to a minimum and that I should get used to it after a couple of injections.  I don't have the luxury of waiting on a new treatment to be approved since I already have a pretty burnt out liver and all the nasty symptoms that go with it.  I don't have very much faith that the treatments will rid me of this since I am a geno 1 with a viral load of nearly 17 million but what do you do?  I am trying to get a better attitude but for now I am just ticked off at life.  I know there is always someone worse off than me so I shouldn't whine or complain but man, I am so tired of dealing with all this already and I have only been in the diagnosis, tests, doc visits circus for a couple of months now.  I have the utmost respect for you guys that have hung in there so well despite all the **** that is laid on you.  If anybody has any soothing "it won't be that bad" kind of advice, I could sure use some.  Then again I guess I might as well know what I am in for.  Thanks, and enjoyed reading the posts.  

[lalapple]

hey don't worry about it, you've made the big choice to tx, so why not get a positive attitude?  tx actually was a breeze for my first 30wks (i'm doing 48), then i started getting really tired from there on, but almost there!  want to stay consistent don't want to give up just yet you know what i mean?   viral load doesn't paint the clearest picture of how damaged the liver might be, some say it may be a marker for how well tx might go, but i started in the millions, dropped to less than 26 by the first month and been undetected since wk 12!

the important thing is to be prepared for whatever comes your way be it family, friends, or personal issues.  and trust me, things really did come up a lot worse than before during tx for me, hurricane, family in the hospital/surgery, dramatic hairloss and i still have to be a full time student in college!  and you ALWAYS ALWAYS ALWAYS want to have HOPE, believe in yourself!

trust me, the shot isn't the worst part at all, so far i've probably given myself more than 70 already, they don't hurt, and at times, you might need extra shots such as Neupogen or Procrit to boost your whites and red blood cells, but it really depends on different people.  some people get all three drugs for their entire tx, some don't need any at all!

best of luck to ya!  if you have anymore questions don't hesitate to ask!

[Missy4306]

Thanks.  Sounds like you were hugely blessed in getting SVR and doing great.  Your post made me feel better.  Seems like everyone has said that it will be a year of pure hell and you can't work or do anything because you are too tired.  I have hair down to my rear and have for 40 years.  I dread loosing it but hey what's a little hair?  They say it grows back healthier.  Guess that's a plus.  Anyway, without hope there is nothing to live for anyway so I keep hoping and praying that it will all work out somehow.  Many blessings and lots of luck to you too

[rita863]

The side effects are very different for each person.  I treated for 48 weeks, took my shot on Friday nights so that I could rest on the weekends.  I was also Geno 1 Phase 2  Fibrosis.  I had my share of side effects but today I found out that I am SVR, post three months.  So I can say for me treatment was the best decision.  You push yourself through each day and you take care of whatever sides you may get.  Drink plenty of water, that is key.  Rest when you can. And keep posting....the people here got me though it!!!
Best of luck
peace
rita

[Tippyclubb]

I've only been treating for 8 weeks.  I am doing triple meds though., Peg, Riba and Telaprevir.  So far I have been able to work everyday and things have not been so bad--not anything like I expected.  Some days I am really tired and have to push myself to get through the day.  Others day I do have energy although it's usually short lived.  Some days I experience nausea and others I have none.  The big thing for me is the rash and the itching, but I have found with the right products ( lotions, pills, etc ) I can get some relief from the itching.  I've been lucky with the headaches and flu like symptoms so far just a couple of headaches.  A few nights I had insomnia, but now when this happens I just up my sleeping medication.

At first I was like you so afraid to start tx--fear of the unknown.  When I did start and sx started to happen I would get all freaked out about it.  I have since learned not to pay much attention to the sx for they are normal.  If I don't dwell on them, they don't seem so bad.  It was just recently --- last week I took on this way of thinking.  I had too and now I've changed my attitude things are going better.  Attitude is half the battle.

Try to take tx one day at a time and don't worry about what could happen down the road.  Handle what is going on today the best you can.  Good advice to drink lots of water--they say to drink half of your body weight.  Although, I do try to drink more if I can force it down.  You will get sick of water.  Lol !  I did notice those few days I had a headache was when I didn't drink the water I was suppose to--so I force it down no matter how full I feel.

Yes, there are a lot of post here about negative sx and some people do get really sick.  However there are some that do experience light sx and hopefully some of those people will share their tx with you also.  Tx is definitely challenging but you can do it , just as you see so many others here have.

Don't be ticked off with life.  Try to change your view on that for you need all the positive reinforcement you can get right now.  Just think with the drugs your taking now you hold the possibility of curing your virus.  When that happens the year you suffered through tx will be so worth it.  Look at this experience as your new lease on life.  Virus free!  

[Trinity4]

First three months were a little rough, ah maybe a lot but then I leveled out somewhat.  Stage 3 edging towards 4 too.  Cleared the virus sometime after 14 wks.  UND by 24 wks.  Take Neupogen for low whites.
Work everyday but and my job is more mentally demanding than physically.  I've completed 49 weeks of tx and have 23 more to go.
I have much responsibility at home also.  I am my husbands caregiver.  I would love for someone to take care of me but alas, that is not my fate.  We are thrust into situations and have to find the best possible solutions to make it all work.  As Lala stated, it's a challenge but you may not have the debilitating side effects some do.  There have been days I wanted to give up and days I feel fairly normal.  You roll the best you can with treatment but make sure you take care of yourself too.
Eat well, rest as much as possible and in my case I always expect the unexpected, that way I'm never too discouraged when the shite hits the fan.
Good Luck with your treatment and be kind to yourself.  Keep a good attitude, it goes a long way.
Trinity

[GreatBird]

Often the first shot is really tough, so don't assume that the rest of treatment will be like that. It hasn't been for me. In fact, none of the successive shots have been anything like that first one.

I think one of the challenges--at least for me--has been staying up with the side-effects because they keep changing. But actually, I'm with Trin, as I come out of twelve weeks and the first three months, I'm feeling much better.

Part of that might be because I've tested UND, so a good deal of the what-ifs are gone. (Not to say that it's a straight shot from here, but the big, initial goal has been achieved.)

Realize that no matter what is going on, it will pass. Make sure you keep an eye on your hemoglobin because when it goes down you can get really tired.

One reason it might look like everyone here is having a lot of trouble is that it tends to be where we come when we don't know what to do about our side effects. There is always help here.

Good luck! You will be okay!! We'll help. :)

[Rockerforlife]

10% have no sides,10% have heavy sides,the other 80% of people on TX fall somewhere in between....im in the 10% no side group

[FlGuy]

Even in the best circumstances the treatment will infringe on your normal life.  Whether it the side effects, showing up for the lab work, remembering to take the meds you will likely find that your life will revolve around the treatment somewhat.  The treatment and all that goes with it (keeping up with work, family, social things and other responsibilities) can get grueling.  Until you know your capacity it's a good idea to pace yourself, put off new committments and focus your attention to the priorities in life.  After you've been in the fray a few to several weeks you'll get an idea about how you are managing and what you're able to do.  Many people are able to keep up reather well, with a few life adjustments.  Good luck.

[lalapple]

hey girl, i'm just UND as of now!  still txing, will take my 38th (of 48) shots tonight!  SVR is post 6 months after tx and still showing neg for the virus, my clinic will keep testing me i think up to 2 years after tx to see my status.  important to keep track of these things you know?

hope we all SVR !

[charm27]

Welcome to the forum. You found a great place for support! I just completed 55 weeks of tx and Im still here! It was tough for me after the 5th to 6th week and with a low HGB was exhausted and had many symptoms ( which are normal for this tx) My point being is I made it through--kept saying to myself thats this tx was POSITIVE for my liver to get better even if I didnt cure. Im now 3 months post tx.

I even went thru tx COMPLETELY alone. Not easy at all but you will get thru it too!
I welcome you and wish you all the luck.
You will have good days and bad....take it one day at a time (as with life) thats all we can do!
Again, hang in and good luck.
Try NOT to be scared you are trying to help yourself.

Charm27
Drink LOTS of liquids and make sure labs are done frequently........

[meakea]

You can do this!  I will take shot No. 27 tonight and I'm still working full time.  I did use some of my accrued vacation to take one day a week off for the first 12 weeks, but that was to make it easier on myself.  Once in awhile I take an afternoon off when I'm especially fatigued or not feeling well but, for the most part, it's business as usual.

Everyone is different when it comes to treatment but you might as well go into it with the attitude that you will be one of the lucky ones without many side effects rather than expecting the worst.

Best of luck to you!!!  How did the first shot go?

[meakea]

PS...I should say that I do much less at home as far as housework and cooking in order to get the rest I need to keep pushing myself into work each day.  You will find that you will find your balance.

[Isobella]

I hope that your first shot was kind and you are off and running towards SVR.

Everyone has a different experience.  For me it hasn't been that bad.  I am in week 32 (or 31--I forget) of 48.  And other than fatigue, my sx have all been light.

I work part time and go to school part time.  I have been known to take a cat nap at work, tho and sleep for an hour or 2 after school.  

For me-the key to the sx is to treat them immediately...don't mess around at all because they can get out of hand.  If you have a rash, mouth sores or anything that makes you uncomfortable, let the doc know so you can get some relief quickly.

I also find that drinking water is very important.  These drugs dry you out pretty good.  I can tell if I haven't had enough water because I will get a headache and feel krappy.  The good thing is that it all goes away soon after drinking.  

Listen to your body.  You will soon learn how to pace yourself.  Sometimes you can push thru the fatigue.....sometimes you just need to rest.  You will quickly re-prioritize (sp?) things....get the important things done and leave the vaccuming for later, lol!

The hair loss-for me-has been more of a general thinning.  No one but me and my hairdresser would even know.  I have continued to color my hair, but I did cut it into a blunt cut to make it look fuller.  It isn't constant either.  I lost some in the teens...and weeks 20-22 seemed like the worst.  I don't "do" it so much like I used to...just trying to be kind to it right now.

Ya, I agree with meakea....it's pretty much business as usual, only in the back of my mind I am always thinking  I'm tired.

Attitude is huge.  SVR is worth it.

Please let us know how your first shot went.  I wish ya the best =)

[IMstacie]

I think it's much better to know what can be expected.  It helps you cope.  

My first shot I only had a very bad headache for a couple days.  I think drinking all the water helped with that as it soon passed.

I was pretty bad the first 9 weeks and missed a couple days of work almost weekly.  But started feeling better after that and by week 12 seem to have leveled out and I'm so happy about that.  One thing that most of these folks will tell you is to learn to pace yourself.  That was difficult for me and all of a sudden I was feeling bad and thought I was going to drop.  You really have to pace yourself and like lalapple stated in her post plan for events.  I actually planned the entire treatment as far as family events, holidays, business travel, etc.

[Trish77]

If we told you you were going to glide right through this and it would be great, we wouldn't be doing you much good.  We've all seen too many people who weren't told enough about what to expect and then when side effects happened, it hit them just that much harder because they weren't mentally prepared for it and were blindsided.  I don't want to see that happen to you.

Treatment WILL impact you.  How much remains to be seen. Almost everyone has some level of fatigue that they need to deal with, which means keeping your energy for the most important things and resting up as much as you can around those things.  It would be better preparation for you if you expect that you will be doing only what's most important over this next year and everything else is gravy.  Don't stop doing things because you MIGHT have side effects.  Just be prepared to drop them if you have to.  Have a backup plan and be prepared to use it if you need to.

Your husband is blind but I'm sure he's not helpless.  I would suggest that you talk together about how to adjust things over the next year so that you can both roll together with what might come your way. It will be better if he adjusts his expectations for you while you're on treatment instead of expecting that everything will remain the same as before.

I worked fulltime while on treatment and aside from appointments, only missed 2-1/2 days of work.  My work is mentally demanding and I think that helped keep my mind from getting too foggy. Having said that, I had various backup plans ready if I wasn't able to work, a few times thought I might have to use them and just grateful it never came to that. It also helps to occupy yourself with what you can to keep your mind off treatment as you will have to focus on yourself and your treatment enough as it is. I took evening courses most of the time I was on treatment.  If there was a social activity that I wanted to participate in, I planned plenty of rest around it.  And there were also plenty of times when I just had to say no and that was okay.  

This forum is a great support.  Nobody quite understands what it's like to go through treament like those who are doing it or have done it.  There are many people here who will have ideas for how to deal with whatever side effects you may encounter and will encourage you through your rough patches.  You will definitely not be alone.

Hope that helps.  Good luck to you.

Trish

[annieCinMD]

Positive experiences with Tx?  Other than "it's working!", I can't really think of any. Of course, that should be enough!  My experience is, that while it's no picnic, it's not as bad as I had anticipated. Way less bad, in fact. There are indeed people that have no sides. The one I feared the most probably, is brain fog. I'm in school part time, and will be taking everything at the Master's level starting in the fall, didn't happen to me, at least not yet (I'm 6 weeks in). I get paid to think these days, so that could have been a bad thing on that note, too.  I had waited a couple years, hoping for new treatments, too. I ended up on a straight Peg/Riba arm of a clinical trial.  So much for new drugs. I think my decision to treat now may have come at the right time, because my last VL before treatment was pretty well over 2 mil. after hanging around  500 or 600 thousand for years.  It was 97,000 at 4 weeks, so looks like it's working, and that's enough to keep me going!  My best advice to give, and one I received from a friend who cleared many years ago, is make sure you get enough rest. I mean prioritize it. My priorities are work, school, and getting enough sleep. The kid can eat microwave dinners and sandwiches.  The hydration thing is big, too.  Lots of H 2O! I put lemon or lime in it to make it taste better.  You're in the right place, people here have many and varied experiences and will support you throughout this process!  Best to you and keep us posted.

[FloridaMouse]

Hi Missy, I'm Missy.

I'm about to wrap up my second round of treatment on April 21.   I have gone 72 weeks this tim.  I did 48 weeks previously and relapsed.   Treatment for me is tolerable and I do pretty o.k. so I guess that's  a little good news, eh?

Missy

[dobbied]

Hey Missy, the TX can be tough, I had to discontinue at 10 wks, but I'm geno type 1 had a VL of over 12 million, and as of two weeks ago it was below 1000 (they don't tell me the real number ) , but they continue,, my worst sx was roids untill last week,, I got slammed with a weeping rash all over my body, ears nose mouth, everywhere.  but they are continuing my interferon and rib therapies. I am hopefull, because what other choice do we have?  I have a brother who started his treatment the same week as I did, he's doing fantastic, he credits it to his attitude and exercise.  He took a long term disability  from work, exercises everyday, sleeps in gets lots of water, is doing super,, there is hope, take some relaxing time  for yourself , god bless. dobbie

[Rockerforlife]

Before i  lost my job i was working 50 hours a week...no problem..and no side effects .im also a RVR..this is pretty good news except for losing my job.alto the job loss wasnt because of TX....

[jdwithhcv]

My tx experience was positive in that it worked.  It was very difficult at times, unpleasant most of the time, long and boring, but it worked.  Viewed in that light ( with a few months to recover) I'd call it a positive experience, although its one I would not care to repeat.

Concentrating on the goal helps.  Good luck.

jd

[QAJ1]

well i took my first shot last night and i might say i woke up in the middle of the night was some weird feeling cramps but nothing really major. and finally i am up this morning and i do not feel that bad got some slight achy feeling but nothing unbearable. all the worries are gone now i am on my way to SVR!!! YAY!!!

As said before earlier if you can treat do it no matter what, it is better than the alternative and just keep up a good attitude it is all you have and it helps.

[medicmommy]

Hiya Missy!
I'm Melinda, and I finished treatment almost 8 months ago. I am SVR (was geno 3, grade 1, stage 1) after the 24 weeks of riba and peg. It wasn't fun, (although I DID get larger breasts and LLama lashes out of it!) I felt like poo most of the time, and dealt with the typical anemia, itching, brain fog, etc etc...I also had the pleasure of getting thyroiditis. You will become very familiar with lab test results (get copies and keep them in a personal file!) and will get to know a bunch of crazy yet endearing people here...I wave my hep c dragon slaying sword in salute to you and your battle! Good luck and may your sides be few!!!! (((((((((((((((HUGZ)))))))))))~Melinda

[moahunter]

The positive comes at the end, if it works. It feels great to have gone through something that was very challenging (at least for me, and my family), but come out of it strong and well. I don't think I have every felt healthier or more alive than I do now, almost a year post end of tx.

[winner727]

i noticed my swelling and dull pain in liver gone after 3 shots. but of course there arent too many bright points to this fight,i have one   how bout you will live somewhat longer to enjoy your loved ones  good luck