Hepatitis C Community
Peg-Intron/Rebetol treatment- Want to discontinue!!
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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

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!
Related Discussions
31 Comments Post a Comment
Blank
Avatar_n_tn
oh come on...i to am and avid outdoorsman, and i had to do 48 weeks of the stuff...you have the easy trip...get to the doc and ask for some anti depressants, and pain killers...i guess no one told you to make sure you had all your chores done prior to starting tx...6 months is a cakewalk...and if you rid yourself of the virus..then consider it just one more long hike in the woods to make a score.

you can do it..

you can e me if you want to ***@****
Blank
Avatar_n_tn
Fish,,,I can't stress enough how easy in the beginning it is to quit.  We all have been there and the first couple of months are the hardest getting use to.  But like Ken said,,,6 months is the best way to go.  You are so lucky because you will clear and not ever have to go through this again.  My thoughts,,,if you don't continue,,,you will be facing it one way or another in the future.  So you are an avid outdoorsman,,,,You probably will enjoy the fishing,,,That would be something you can definitly do.  Its such a short time of the rest of your life to maybe not to do all the things you want.  Okkkk,,,I've probably said more then you wanted to hear but Pleassse don't quit!
Blank
Avatar_f_tn
Please look at a lower post and you will see that I am on daily Infergen and Riba and it is nothing but pure torture for me.  I, too, wanted to quit and it has only been two weeks (not quite).  All I can suggest to you is please don't quit.  That is exactly what this disease wants us to do.  It wants us to give in to it and let it hurt our bodies.  Eventually the sides will get easier (at least that is what I am told).  Please, please, do what you have to do.  Just don't quit.  You have come to the right site to talk to us about anything.  We are all here for you and can offer you the support and encouragement you need.  As one Hep C patient to another, we have to kill this thing before it kills us.  Hang in there.

Linda
Blank
Avatar_n_tn
I appreciate the response, however I pointed out in my post that it was NOT meant to be relating to a violin. I'm pretty much disqusted with the medical system, policies and frankly all the D _ _ n pills they try to injest in one and I see nothin' wrong with an alternate way. As far as taking additional pills, I already consume 600 mgs of Dialantin, 100 mgs of Zoloft and now 1200 more mgs of this treatment, along with one injection per/wk.. To reiterate, this is not meant to be a violin, but a request for answers regardin' any side-affects that there might be when I stop the treatment!?
  Hey, ta' reiterate again (love that big college word), I thank both of you for the gettin' back and its important, that  you realize that :-)!? Again have a good one.  ~Skip
Blank
Avatar_f_tn
I'm sorry that you're having such a hard time.  These treatments are very rough, I know, I've treated 4, NO, 5, NO,  ...think again, 7 times!   It's taken me a lot of patience, prayer to God and prayers from others, a new intestional fortitude that I never knew that I had inside of me, etc.  There have been days when I wanted to just give up throw in the towel, etc., etc.   As the others said, you are very fortunate that you are able to only treat for 6 mon.  Please try to stick it out.  I'd have given up a lot to be over and done with it and to be in remission after only 6 mon. of treating.  Try to remember that there is an active life of your OUTDOORSMANSHIP on the other side of treatment.  Each day that you make it through treatment, cross it off of the calendar and congradulate yourself on making it through another day.  Tell yourself that you are that much closer to being done with this darn discussing treatment.  Punch a pillow.  Go out in your beloved woods and have a big scream.  Cry....it's healing to just let it out.   Remember to drink gobs and gobs of water, it's such a big help with the side effects.  Try to take some short, very short walks outside, maybe to start you may only make it around your house 2 times, but you'll be outdoors!  There are ways that you can make it.  Please don't give up.

Susan
Blank
Avatar_n_tn
Unfortunately Combo therapy is the only treatment that can cure you. Alternative treatments can slow the progression some nothing more. I’m not sure why you’re worried about the side effects of stopping if you’ve already made up your mind to quit. In a week or two you should feel as you did before tx since you haven’t been on it very long. It’s the long-term side effects of stopping that can kill you.
Blank
Avatar_n_tn
So your mind is made up, huh?   You think this disease is going to lie low without your doing anything about it?  That as you get older your stage 2 fibrosis will just remain where it is?   I really wish that were the case, but odds are that it's not.    You've got so much to live for, dear sir.  Do you really want to be a sick grandpa losing steam and dragging around and just feeling basically unwell until your liver tanks?    Endstage liver disease is not a very nice way to go, and if you can put in a mere six months of discomfort to beat this thing, well that's a small sacrifice to make for your family.   Betcha they want you around a lot longer.   Am I right?

I know you're interested in hearing how easy or hard withdrawal might be, but that's a relatively unimportant factor in the larger scheme of things.   And please don't make me use the W-U-S-S word!   So many of us here are outdoor types and nature lovers and runners and cyclists and hikers and gardeners and we all know what you're going through.   Come here for support--we have that in abundance here.  You sure you won't reconsider?

Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
Strange things happened to my apostrophes
Blank
Avatar_m_tn
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.
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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.
Blank
Avatar_f_tn
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 !
Blank
Avatar_n_tn
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!!!!
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
MEOW!!!
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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
Blank
Avatar_m_tn
all of you had good advice on this post.
Blank
Avatar_n_tn
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.
Blank
Avatar_n_tn
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!!!

Blank
Avatar_n_tn
YOU SAID YOU DIDN'T WANT VIOLINS!!!
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
Will counsel for trout.
Blank
Avatar_f_tn
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.

Blank
Avatar_n_tn
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.  

Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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.
Blank
Avatar_n_tn
thanx so much I will keep this in mind
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Hepatitis Answerers
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
683231_tn?1408489117
Blank
flyinlynn
Auburn, WA
179856_tn?1333550962
Blank
nygirl7
Planet Earth, CT
446474_tn?1404424777
Blank
HectorSF
CA
Avatar_f_tn
Blank
Livelife777
Avatar_m_tn
Blank
can-do-man
IN