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.  

[JAP23]

I had a bad experience with treatment. I am going for my second round now (I have not started), first round (12 years ago) took a lot of my energy away, but I was able to work a full day, after that rest. After 4 weeks I began having a "metalic taste" of everything I ate. A few days later an great allergy developed and had to be taken off the treatment immediately. I was allergic to Ribavirin. I am going to take the second round again shortly, I hope this time it is successful, but the first time it was not. Best wishes!

[newleaf09]

I've been in a 3-drug study for 5 1/2 months.  Stage 4.  I had super low VL and cleared immediately.  Bizarrly, I had no flu-like reaction at all to the peg shots.  Others have had few side effects except some fatigue.  You may be one of the lucky ones. The hydration advice will help A LOT but doesn't cover everything.  Be on the lookout for mood changes from interferon and don't shy away from antidepressants.  The worst for me was the fatigue that comes with the ribivirin (breaks down hemoglobin).  There are rescue meds to improve that and when they work you feel darn near normal.  Believe it or not, you start to get used to the whole thing after a few months.  You stop trying to keep up your regular life and take naps and reduce house work.  It's not so bad, just a bit weird.

I have worked mostly full time, sick days of clinic days and occassionaly going home early for a nap.  I am about to go out on extended sick leave because I have 5 months of sick leave built up and by god, I'm going to take what I earned.

Positive?  I've got a good one.  I had uterine fibroids, many & very large.  Most women get a hysterectomy but I don't believe in removing offensive parts of your body; stick it out.  Shortly after I started treatment, they started to shrink and it did not take long until they were completely gone.  They should stay gone forever.  So I am getting my figure back, losing a little weight and I know I will not only be getting well at the end but I'll be better looking!!  Especially when I get over the mummy look from the dehydration.  The sides are all temporary.  Go for it.

[Ugly14U]

"...positive experience with treatment"? Yeah, the positive experience is that the virus goes away, and one gets to die from something other than liver disease. That's fairly positive, no?

[winner727]

oh MAN that was some funny sh@t. i laughed my 1st laugh today .

[Isobella]

Wish I could say the same....I'm so fogged, I responded twice.  

Missy:  Hope you are doing well =)

[nygirl7]

I'm curious too - I started to respond but didn't realize how old this thread was!

[jdwithhcv]

By now you are well into your treatment.  How's it going?

jd

[strait_texan]

hi missy beautiful baby in profile, new to this site but i will share my take on your question and mission for the great positive response,we were all searching for that at one time or another, the negative is that you will hear a million negatives before you hear 1,2,or 3 positives that will answer what you are looking to hear. here is my attempt at positive response for you humor me pl as i dont know you personally #1 it's just spilt milk and if you wipe it up it will all be ok- oh serve some more milk , #2 the outcome can only be better than living thru not doin any treatments.#3 did you wake up this mornin and open you eyes? then thank you lord ,all will be fine.  I was dignosed hep-c in 96 i'v had it aprox. 25 years went thru 2 tx 1 infergen in 1996 back  when it was still tagged as non-a , non-b , whatever!, but did not respond, oh well got on tx again in 2003 pegasys was the next tx , would you believe did not respond again . I am geno type 1a have gone from 240,000 vl to 17000 to 27000 and at present 3,700,00  , not so high but i also have chronic arthritis from previous accident, as well as chronic cirrhosis,and osteoperosis as a result of this, in 2007 had a episode that is a sx that will happen at some point if not prepared esophageal varices , lost 2 pints of blood almost expired due to that nontheless i'm still able to write this ha-ha, as well as a few other things will happen because of imune deficiancy, oh did i mention almost exited again feb. of 2009 per pneumonia. i am still waiting for 2 unicorns;1 a tx  protocall for non responders that can put my version in remmission,2 that society removes the stigma of our desease from their mind and does everything possible to get federal aid for research and assistance for individuals living with this ., when all is said and done,  missy you will have to cry when you have to , laugh every chance you can, rest as you need to because you will need to, and for all those times when family doesn't understand your situation, your support is not there, look for your higher power and all will be fine. family will always be their. now that i'v exhausted all my breath- whsh , i hope this was helpful .oh and i did lose my hair and it did grow back , lost my teeth , didn't get those back ,but bought me some so now i smile all the time .

[jdwithhcv]

And this was a positive experience for you?  Oh, honey, you have GOT to get out more!

jd

[GoofyDad]

"Anybody have any positive experience with tx?"

Well, I walked in on a fat gal doing a number 2 in the unisex bathroom at the local Chevron station. Does that count?

Other than that - I was able to work throughout but honestly wasn't on top of my game, nor terribly effective. But I survived and no one seemed to notice too much. I took occaisional sick days as I felt like it - very few that I really needed to - but it helped keep the batteries charged.

Good luck - you'll be OK. Just remember to lock the door at the Chevron.

[Isobella]

At week 37 I can say for sure.....I am positively experiencing tx =)

It's not that much fun....but has been doable and not at all that bad.

In the risk/reward train of thought.....it's very much worth it.

[chuckles333]

I'm in week 6 of treatment and so far it's been nowhere as scary as I was led to believe. I'm sure others have had a really bad time with it but for myself, and I suspect, a large portion of those treated it's just not the horror story we're led to believe. Is it worse than no treatment? Obviously! Is it a total hooror story? Hardly. Is it worth the result if you are cleared? You had better believe it! Hep C is not a benign thing. it kills people! Be strong.

[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

[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.

[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

[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.

[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

[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....

[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

[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

[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.

[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

[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.

[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 =)