Peg-Intron/Rebetol treatment- Want to discontinue!!

[fishsteelhead]

I have been on this treatment for five weeks now and want off of it!! I can barely function ie., tired, loss of appetite, cranky, etc., and more etc's.. Question: I want to discontinue this and was wonderin' what, if any adverse affects will there be!? I am waitin' for a call from my Doctor, as I informed one of his nurses about my decision (God knows how long that'll be), so was hopin' someone could give me additional info., regardin' this?I am a avid outdoorsman who loves ta' hunt and fish, I also have two BEAUTIFUL grandchildren that I want to share with, along with the MS.s, my also BEAUTIFUL daughter, her hubby, whom I might add is a professional huntin' and fishin' guide, which makes it even harder ;-) and my son! I'm on the 6 month program (stage 2 liver)and I can barely drag my self around the house!! I hope this is not taken as a VIOLIN story, because it is not meant ta' be! Just would like some answers from those who have experienced what I'm goin' through Any response is greatly appreciated.
  Have a goodin' and hope the week-end was a good one for ya'...

p.s. I along with the family are investigatin' alternative medcines. Soooo, we just keep our fingers CROSSED!

[rosemary_m2]

thanx so much I will keep this in mind

[rosemary_m2]

Hello ALL I'M NOW TO THIS SITE. I'am very happy to be aborad. I have Hep C I did treatments and it was very horrible for me. I quit it a few months ago... I had headaches around the clock I could not function... And to BOOT I was extreme DIZZY I could not even drive...I also have a severe handicapped 13 year old son who needs my care,,,,I had to get off that stuff...Right now Iam looking into nutritional supplements Has anyone heard of DR. Burton Berkson? He is located in Mexcio and has specialized in the treatment of liver disorders for the past 20 years he has a triple therapy which consists of taking 3 these supplements taken in divided doses 2 times a day iam going to look into this  and see if i can start this therapy. The names of the nutritional supplements are LIPOIC ACID, SILYMARIN,AND SELENIUM... HOPEFULLY THIS CAN BE OF HELP FOR ANYONE CONSIDERING QUITTING TREATMENTS.

[Laika]

Silymarin comes from milk thistle.  These supplements may be good for your liver, but will not cure hepC.  Many of us have tried them prior to treating with interferon & ribaviron.

I am sorry that you had to quit your treatment.  There are many side effects.  When you decide to undergo treatment, you have to get your life in order and make the commitment to do it.  There are drugs and various other items that help with the side effects.  If you should decide to treat again, come here and ask how to proceed in order to get through it with the best control of side effects, what to ask your doctor, how to pick a doctor, what you should do for the best odds of clearing the virus.  There is good info here.

Laika

[kennedge]

ok so you get the point...there is no alternative treatment that can rid the virus...none of us would put ourselves through the tx hell if there was...so bottom line (harhar) do your six months and fish for decades...or wimp out and do a deep six sooner then you might like

best of luck to you

[bluepeng]

You need to do what's right for you.  I'm not a doctor, but I get the feeling you posted here to get support so you won't quit.  I hope you don't.  I know just how you feel.  Believe me.  Use the people here for support.  Complain to us.  TX works .. the other remedies are dubious at best.  It will get better ... not great, but better.   You can do this brother, you can do this.  

Blue.  

[cuteus]

what everybody else said.
and ...you are on your 5th wk, it could mean that the riba is kicking your red blood count, and even  mild anemia can cause a lot of discomfort: aches, shotness of breath, fatigue, dizziness, to  mention some. If your HGB shows below your normal, and it is wearing on you, ask for Procrit, it helps bring you back to "normal". I used that weekly and vicoprofen daily to ease the tiring side effects. it helped me complete 72 wks! but you bet I felt like quitting maybe a zillion times.
I wish it would have been only 6 month of torture, but it wasn't, and I wanted to be healthier for my daughters and their special life events.I hope you do too.
Switch to Pegasys, get Procrit, oxycontin anything to get you through the next 5 mo.  Then you have the rest of your healthy, HCV free life to hunt(grrrr) and anything else. Recovery from tx is not that long. Recovery from HCV without Tx is never. Like it was said, if there were alternatives, we would be doing them.

hum, on the other hand...one less hunter might not be a bad thing.

[Dottie/gonagetbetr]

OMG

let see side effects from quitting hmmmmm
all those people you love may have to one day sit with you for months as your liver deterioates.
visit you in the hospital as you start having organs removed.
watch you suffer in pain as your liver shrivels up
that ought to do it
i started on the 48 week plan but because i had to be a slow responder i get to do 72 weeks. dont think for a minute that i dont miss playing with my 12 year old daughter how selfish would i be to not take a year and a half to try and get better so that i can be there for her for years to come though

no violins here not for you not for me
just get tough and get it done. i dont want to die yet

[Califia]

Will counsel for trout.

[LvdByGod!]

YOU SAID YOU DIDN'T WANT VIOLINS!!!

[LvdByGod!]

REEL IN THE STEEL! she's almost in to shore...you hit a patch of lilly pads....and you cut the line? common! i'm an old fat lady and i have done 17 months of this treatment so far trying to reel in my big one...I WILL GET HIM TOO!

you sound like such a strong guy...i know YOU can do it!!!

at least consider waiting until you get your 12 week pcr to see if meds are clearing it...at that point if you are clearing your half way there and the intense part will be calmed down and you will have a better idea of what your up against...if your not clearing as you should then go off...try your herbals! ALTHOUGH DANDYLIONS ARE NOT EFFECIANT DRAGON KILLERS! USUALLY DRAGONS EAT DANDYLIONS FOR DESERT!!!

if you still are not motivated to go for it with a vengence then perhaps you should read up on "end stage liver disease" and take note of the real pain and suffering associated with that...i was just reading today about a guy who had cirhosis and his whole body swelled up like a balloon and his stomach became like a blimp...it was so big that his bellybotton popped out and herniated and began to squirt out fluids...

oh...he hasn't been fishin lately...he traded in the "gone fishin" sign for the "gone to the hospital" sign!!!

i watched my mom die of this and it is so not nice (i'll spare details on her) and now i have it...i really want to avoid that if possible and at least get through my treatment for my chance to clear this discusting disease...sorry to be so tough but results of cirhosis/end stage makes meds seem like a common cold!

i pray you will never go through that no matter what you decide!
i know you can do it though and give that dragon the run of his life!!!

keep in touch!!!

p.s. if you do still choose quiting we of course will be here for ya too!!! your dr can inform you of how to stop meds...after he slaps ya around a bit too, of course!!!

[new-sojourn]

i grew up on the lower Columbia River and can remember fishing for steelhead in the cold, grey winters nearly 60yrs ago.

I was hospitalized in kodiak Alaska in 1967 and was transfused w/hep c.  It went mis-dx until I ended in icu w/sever abdominal/esophigeal bleeding and liver failure 9-12-2001.

I was then dx several weeks later, b/had already been told that I was gonna die.  I went round, made ammends and said goodbyes, went to Paris. came home, found out I was a 2b and a study for End Stage Liver Disease patients w/no options-no insurance so no transplants-was available to pay for the meds.

Well, long story short, I cl'd the virus by day 18 and that was 3 yrs ago.  You amy already be rid of the virus and can halt the damage.

I planted a garden when I started and by the end of the 24wks, I had so many tomatoes we were still eating them until Thanksgiving.

So I think you should suck it up, shut up and take your medicine.

Before, during and to this day, I follow a semi strict diet and herbal and supplement regime.  I do large amts of milk thistle,  SAMe, ginsing, joint juice, flax seed, rice protein, red, green and black and herbal teas, carrot/apple jucie, fruit smoothies w/liquid vitamins, etc.

We walk our dogs daily along the Yakima River and travel extensively.  I look and feel 20yrs younger-which is good since my partner is 8yrs younger.  I fish w/the boys, tour w/the band and grow a mean tomatoe.

Pretty good for someone who was suppose to be dead in  September 2001.  So, i'm probably older, sicker and poored than you and still managed to get thru treatment w/no additional Rx's for ADs, painkillers, etc.

I'm also a medical marijuanna user, still classified as end stage, comp'd liver b/feelin' just fine.

[genedog]

all of you had good advice on this post.

[Laika]

I am a 58 yr old woman with kids & grandkids too and an outdoorsy, active life.  I'm in week 8 of 24, so not quite as active as previously!  I mope, pout, freak out, am overcome with fatigue, feel like I'm going to faint, nosebleeds, lately back pain.  But today I had a good day, and am grateful.

Here's my suggestions:  I have a great doc who monitors closely.  My first PCR was at 4 weeks, which showed NEGATIVE for the virus in my blood.  This was a tremendous boost to my spirits ... showed me that these meds so good at making me feel like hell are also doing their job.  So--ask your dr to give you a PCR and see how you're doing.  It may help you feel encouraged.

Another suggestion:  You seemed to make a kind of anti-dr statement...wonder if you have the right one?  Your doctor needs to be on your side all the way.  He should monitor your thyroid to make sure yours isn't crashing.  Quite a few people lose their thyroids in this treatment-- it's no big deal, just means you have to be on thyroid hormone, and once you get the dose right, you feel fine.  The bad thing about losing your thyroid is NOT KNOWING.  Symptoms:  depression, weight gain, loss of hair, fatigue.  On these hepC meds, you have so many side effects that you wouldn't know if you had hypothyroid side effects too.  Insist that your doctor check your thyroid regularly.  My doc says it's a cheap test and I get it done almost every time I have blood drawn.

And, as you were advised above, if your hemoglobin is low, you are anemic and need some Procrit to boost 'em back up.

I was diagnosed in 2000.  I wish I had all the money I blew on quacks.  I took milk thistle and a whole lot of other herbs and supplements.  My biopsy in 12/04 showed stage 2 liver disease.  So did the milk thistle etc help?  Maybe, but if it did, not enough.  No way did I want my liver damage progressing, or to be any older trying to get thru this treatment.  Better doing it at 57-58 than a few more years down the road when it will be harder to do and your odds for success decline.

To reiterate:  You may need a better dr.  You probably need some additional or different meds to help you with side effects (including Procrit if your hemoglobin is low).  You may need to switch from PegIntron to Pegasys (if that is possible).  A PCR showing you good results with this stuff killing the virus would be uplifting.  You should get your thyroid checked.

Look at all these genotype 1 people doing twice as much time as us!  You need to learn some more about this disease, hang out at this forum, ask questions.  I simply can't believe you would choose to go off this treatment and go off in denial to take herbs.  A whole lot of us have done the herb thing, but we did it FIRST.  We know it doesn't work.

I had to start in on an anti-depressant (Lexapro) sometime in the first few weeks.  It was too powerful for me--just kept me knocked out, so I now take 1/4 to 1/2 dose a day, alternating.  I feel fine, now, as far as the mania, anxiety, depression stuff goes--it's under control.  You need to participate more in the medical decision making...don't just let your dr tell you what you need.  You have to figure out a lot of things yourself, and the people here can give you information to get you pointed in the right direction.

You can do this.

Laika

[Ambush]

I would have given my left arm and right leg to do 24 weeks ~ like many of us here (I did 60 wks).  Tx is hard and long, but if you don't take care of business.......being sick with a dying liver will really bum you out.  Try to hang on ~ I wish you the best with whatever your decision is.
ambush

[LvdByGod!]

MEOW!!!

[ral]

Steelhead

I must tell you that you are on the short trip also. I did 72 wks full dose and did not clear (relasped). You have family to live for so keep fightin. I will go back on tx soon for probably longer and stronger. I have family also I want to be around for.

Whatever you decide good luck but look inside deeply.

Good Luck

Bob L

[stc1993]

Once I found out I had this disease it never occured to me to not treat it & since I started treatment I have never thouht about quitting. You have to be in it for the long haul. Man you got it made only have to do 24 wks.  We 1's have to do 48 min.
I went trout fishing yesterday and i'm on wk 36. We have speckle trout in Fl.

Monte

[cbee]

Many of us on this treatment are or have been in your shoes. I too was ready to give up at the beginning because of the mental/emotional side effects.  A suggestion:  Can you speak with your doctor about possibly switching to the other interferon, Pegasys?  I understand that Peg Intron can produce much more severe side effects at the beginning which I why I chose Pegasys.  I too am doing only 6 months and am very grateful for that.  If you've hung around here for awhile you will be very humbled by others' experiences.  There are folks here who have treated 4 to 5 or more times.  

About alternatives, I learned I had this 14 years ago.  I tried milk thistle, lipoic acid, selenium, as well as other homeopathic remedies.  I exercised, tried various "liver" diets.  This was all helpful with the side effects of the HCV but it certainly wasn't getting rid of it.  As the virus progressed I started feeling like ****, having lots of brain fog, depression, joint aches and pains, etc.  They say that after a couple of decades it really hits you.

I am a single mom of a special needs kid.  I work full time (lately I've taken Mondays off which helps for the rest of the week).  IF I CAN DO THIS - YOU CAN DO THIS!!!!

[NikoS]

Fish - try to hang in there, I too am doing 6mths & have just hit the 2 month mark, right now I am struggling with the thoughts of giving up.. I decided to keep working full-time & I guess this keeps me relatively sane & allows me to break up my day in to little fragments where I don't think about things...

It's been tough - I am single & while my friends are very supportive I have found this a very lonely journey.

I discussed stopping treatment on the weekend with my brother after I had pretty bad breakdown. My family & friends really want me to go on & it's easy for them to say - they are not going through it.

While we maybe lucky we only have to do 6 months - it is still no "walk in the park". it's all relative.

I am going to do everything I can to stay on treatment... and I hope you will do so too... but either way - all the best !

[Califia]

Wait!   Don't go!   Many of us know a lot about "alternatives" and would be happy to advise you.   I myself am steeped in herbalism and usually try to avoid pharmaceutical medicine.  But Soleus is right, my friend.   Yes, you can "manage" this virus with heavy doses of antioxidants and milk thistle and many other herbs, but you can't knock it out.   You do understand how serious this disease is, right?   That if affects your whole system and organs other than your liver?   Anyway, I applaud your interest in milk thistle, which is definitely liver-protective.   But sadly it's not enough.

[fishsteelhead]

First off, I want to thank your for my new nickname. Just thought I'd let ya' know that steelhead is a sea-run trout (I'm sure your aware of that?), so  I guess one could say an old cowboy is then a, "Head of Steel"!? I thank all of you for your concerns. I will monitor this site and weigh things, however right now the naa-naa's (as in lookin' at the back of my eye lids) are gettin' the best of me, so I'll close this down for now. Take care all!!  ~Skip

[genedog]

when you got a steelhead on your hook do you cut the line when you get a snag? no you go get the fish,  point is you just have a snag in tx right now but it will get better.

[Soleus]

Strange things happened to my apostrophes

[fishsteelhead]

Mucho' thanks for your input. This will be a decision that I (along with my family's input) will make and am hopin' that it will be the right one. I want to do some more investigating into the alternative ways. There's a few that I've looked into, one of which involves the use of "milk thistle".
  I know this to be MONDAY, but when the week-end gets to ya'-ENJOY ;-)!! Again, I thank you for your concern and com-back.  ~Skip