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Avatar universal

Not able to tolerate Pegasys.

My father is an HCV Patient with "Genotype-1". He has a history of needle ***** from a Hepatitis B patient 15 years back while treating patient as he him self is a doctor in infectious diseases hospital. His lever function is absolute normal so far. 6 Months back he had viral count as high as 1.6million copies per ml. Then he started the treatment of pegasys with rebavirin. It brought down the viral count to less than 600 copies per million in three months. After six months that is now, the viral count is again non detectable. He is supposed to continue the treatment for another six months as the recommended period of treatment for genotype-1 is 48 weeks.

But he now wants to discontinue the treatment as he is not able to tolerate the drug. He has complaint of severe depression, flue like symptoms, mild fever, loss of appetite, loss of muscles and many more. He has not taken the drug for last 3 weeks.

This situation now bothers us as we are not able to see him ailing due to medicine side effects and at the same time we understand that not taking complete treatment can lead to serious outcomes. Now,

1. What would happen if he stops the treatment now?
2. Will it be advisable to start it after some time, so that he has some time in between to relax and come out of dreading effects of the drug?
3. How many people around the globe do so? (Leave the treatment)
4. What would be the rate of rise in viral load after this much treatment already taken?

Should I press him to complete the course or its better to live rest of the life in a quality way.

Please Help me!
20 Responses
Avatar universal
hey how are you? i was taking a break from the computer a little and trying to take a break from hep c...if that were possible. i've really been focusing on those folks from the louisiana area and wishing i were set up to take someone in. it's so so sad. it really puts liver disease in it's perspective. there's always someone in the world worse off. our church is sending stuff to the survivors this weekend, so that's a start. i hope we keep sending stuff, i bet we will.

hey, i don't think i did see that last post of yours. sorry. so, how long have you been on tx now ina? are we plowing through to new years day? this is my big plan.

but like someone said below if you want to make God giggle tell him your plans...heehee. all this is in His hands and those are the best hands to have them in.

after all this time isn't it hard to think about going off? it's sort of a security blanket to me. while i'm on meds i'm clear but when i get off who knows? so weird... you'd think after all this time i'd be chomping at the bit to get off treatment. i'm scared to though. i'm not sure how i will mentally deal with it if it comes back. i know i will be clinging to God for help! after watching my mom die of liver disease/cancer and seeing how horrible it is, i really want to avoid that like the plegue.

hey i wish you were around more ina. it's so good to hear from you. every once in a while i just need a break from all this heaviness. you? but then i'm sunk when it comes to trying to catch up on everyone after a few weeks, and especially now with the insurge of so many wonderful new folks...

hope your well and i hope to hear from you and find out what your up to these days...when are you planning to end treatment?

your friend, sandi
Avatar universal
Good luck to you both.  Will say a prayer for you.
Sandi, I know what you mean.  My mother-in-law also died of liver failure.  I loved her dearly and it broker my heart to watch her suffer.  Wish I'd known then what I know now.  DJ
Avatar universal
Well, they say that doctors make the worst patients.  Could it be that he is not telling his hep c doctor about his sides?  Could he be taking charge of his own treatment?

What you said about not being able to see the side effects on him is true.  Others really can't.  But we here can relate to each other's stories because we have experienced what he has.  Perhaps if you could get him to post here he might see it an an outlet - a release in that he does not have to appear week amongst his peers.  

I truly hope he can get back on the treatment in order to continue to stay clear.
Kathy
Avatar universal
yes, isn't that a hard way to go? ...so much suffering. i guess that's why i'm such a die hard pro treatment person. one only has to see that once in someone they love to know how bad end stage liver disease is and how hard to do anything about it once their there. it scares me unbelievably. she went through so much. *GOD BLESS HER SOUL... now, she is healed though and with the Lord.
Avatar universal
I hope you did read that this is a patient to patient board with no physicians giving advice. The members here will share their personal experiences, theories, opinions, etc and you can take what you need from that.

the symptoms described are the "normal" stuff we deal during tx, and many of them are due to the anemia from the copegus. He seemed to have responded so well as far as the virus goes and had a good chance to get a SVR(sustained viral response. 3 wks without meds is not good so soon in the tx. He would need another PCR to see if the virus rebounded, because that is what happens with HCV, it comes back when not eliminated completely.
I am surprised that his dr has let him suffer all those symptoms without relief. The Procrit would take care of the aches and  depression due to anemia.  Pain medications would take care of muscle aches and fever. Why aren't they intervening, or are they? What is his biopsy results? If it is mild damage, he could wait for new meds, but if he is over 50, age is not on his side to wait too long. Men progress faster in liver disease.
He needs to come here and talk with others going through what he is going.  To Share and whine if needed.
I was a 1a, did 72 wks Pegasys and copeg, felt like **** most of the time, Look like it also(in my opinion), dragged to work(staying home would have been worse) and was given Vicoprofen and Procrit in order to finish in one piece. I did. So far I am still negative.
It was said here repeatedly, that these symptoms are TEMPORARY, and HCV is not. His QOL during tx is not great, but it will be after he is done. HCV might not give him the best of QOl either and if he reaches ESLD, even less. People do feel better after tx and hcv is over.
Please scroll down to  this thread:
Length of treatment - bliss68: 09/04/2005
it had a good discussion going.
I hope things get better soon.
Avatar universal
So sorry to hear your dad is having such a hard time with tx. Has he discussed his awful sides with his Doc? There are many meds that can be given to help him tolerate all the side effects that really bother him. You say he has not taken his meds for 3 weeks now, did he tell his doc that he quit? As far as starting up again, that will need to be addressed as to when and how. I do know that he needs to drink as much water as he can handle, it really helps to diminish some sides. Please get him to talk to his Doctor, there is help to get him through tx. On the other hand, there are some who just cannot tolerate it. Good luck and may God bless.
Avatar universal
i'm so sorry to hear about your dad. i'ts so sad that he got this while helping others in our condition.

your dad has all the same side effects we all face on this treatment. when on the treatment he should be taking some things to improve his side effects. he probably knows about this stuff or will quickly learn it.

he should go on an anti-depressant for the depression and procrit for the anemia which will help him feel better and function better. we take pain killers (like tramadol) or over the counter stuff when the pain gets bad. we take ambien for sleep problems and they also have meds for nausea. the medicine makes you very anxious and he may find zanax extreemly helpful...i sure do...loosing wieght is probable but should tapper off after a while on tx. excersize to keep up muscle tone...there is alot on the web about treating side effects and you can always get support here.

the idea is to treat each of the side effects that come up as they come about.

the big problem is him stopping the meds. this is not good. obviously the worst thing that can happen by stopping meds is that the liver disease will get worse and could lead to liver failure and/or cancer.

i think it's important for you to find out what grade and stage of liver damage he has and if it is stage 2 or above he should do everything in his power to stay on meds without stopping. this is extreemly important to clearing the virus. if he doesn't stay on he will not clear it. once on the meds he must take them ritualistically, never missing a dose.

if he is only a stage 1 then he may want to try waiting for eventual new treatments. but it is not yet known when or if this will ever happen.

he needs to realize that the treatment is bad but no where near as bad as the problems of liver failure or cancer. he must weigh his risks of staying on meds vs. his risks of having the hep c kill off his liver...

hope this helps,i pray he can find a way to stay on treatment for the durration. it is hard but it can be done. i've been on treatment for 2 years straight now, and it is tough but with the meds to help the side effects it makes it doable for many. now all this asumes he's only got the normal hard side effects we all get. i don't know what he should do if he is allergic to the meds or something that serious.

sandi

Avatar universal
Sandi, if you don't mind my asking, I'm curious as to why you have been on tx for 2 years straight.  The longest I have seen so far on this board is 72 weeks.  Just wondering.  DJ
Avatar universal
hi there dj, i have been on treatment this long because i am a "breakthrough" patient. this means the virus got stronger while i was taking treatment for it. they don't know exactly why this can happen but i opted to treat for a full year after i began to get clear pcrs again.

at my 7th month as i was preparing to stop tx (i have type 3),the virus multiplied greatly and was showing up on the pcr "AFTER" i had been showing clear for all those months on tx.so i extended treatment once i got it undetectable again. i'm due off in november or end of december if i get my way.

i'm planning for a new years resolution of never going on this stuff again cause prayerfully i will be clear forever! if i'm not i will retreat with something stronger. i really want to clear this because i saw my mom die from liver failure. it was horrible. i really don't want that kind of an ending to my life if at all possible.

thanks for asking dj. how are you? hope you're well!

sandi
Avatar universal
It sounds like your father has abandoned treatment due to the side effects. I'm not sure what exactly the percentage is, but I think this happens in around 10-15& of people who treat. Maybe higher.

Now here's the thing. Not everyone with hepatitis c is equally sick. Some people have very little liver damage and some people have a lot of liver damage.

Since your dad's a doctor at an infectious disease hospital, I assume he probably had a biopsy that told him how much liver damage he has.

If your dad has no or minial liver damage (stage 0 or 1) then he may actually be making the right decision to abandon treatment, assuming his side effects were very severe. I say this because hepatitis c is a very slow moving condition and a  stage 0 or 1 has time to wait for newer, better, easier treatments that hopefully will be available in a few years.

On the other hand, if he has significant liver damage -- stage 3 or 4, then the consequences of abandoning treatment are greater. In this case, he should probably consider re-treating after taking a rest, building back his body, and maybe coming up with a better plan to deal with side effects such as treating anemia more agressively and starting with anti-depressants, etc.  But like someone else said, doctor's are often the very worst patients.

As to your question what would happen if he stops the treatment now? He could still clear the virus but his chances are less. Can't tell how much less because most studies treat gentotype 1's for at least 48 weeks. If I had to guess, I'd say he has a 20-25% chance of clearing as opposed to a 40-50% chance. Let's hope he's in this lucky miniorty so you and your family don't have to deal with this any more.

-- Jim

Avatar universal
sounds like a well thought out plan, and I think you got this thing licked! Take a pcr test at the 4wk mark post tx, and if you did bounce back and are up for it, maybe get on the meds and continue, it is hard to decide since reference studies are so hard to find or non existent, is almost like flying blind sometimes.
are you also on riba? I only hear you mention Pegasys.
Avatar universal
yepper, i am on the whole shabang for 2 yrs straight in october! 1200 mg riba and 180 ml peg weekly. these are my bragging rights i guess! ~:O}

however, i have missed doses way too often...this is my failure all too often...no matter how strict i am, i continually, accidentally, fall asleep before i take my evening meds...

now don't try to figure that out with my sleep schedual...it will boggle your mind...

geesh, i'm a mess!

i have been on a "normal" sleep schedual for the last week or so and it really helps me stay on schedual with meds...sleep is really a rollercoaster ride on these meds for me as you know...

hey, i just sent you a post above too...

have a great evening ivette...i like your style kiddo!
Avatar universal


hey Ina, i will try to find that post on "pcr". i'm not sure i will be able to locate it though...is that the whole title of the post?

by the way my albumin is hovering around 3.5. the effects of this have not been as bad as that one isolated event in florida with the bloating and stomach pains. i am wondering if i really had aesetis or if it wasn't the sun burn as the dr suggested. however, i recently went to FLA again and got sunburn pretty bad too...seems to be a pattern with me since i hate sunscreen so much...but this time the sunburn did not cause any puffing up...so this will be a mystery to me until i get my next ct scan some day. i guess aeseties will show up on that if we have it.

ina, be careful on extending treatment so long if it's really getting bad. i know exactly what you mean by this...i am dealing with the EXACT same things at this point emotionally and more than ever. zanax is a real help but i can't take too much cause it messes with my personality...if i take too much my husband notices a change in me that he doesn't like. so it's a balancing act.

the dr never did give me more pain killers he just continued to give me the tramadol cause it's safer for bad livers. i guess i'm now re adjusting to the pain again.i really can't complain if he is caring about me. though i'd love to have some more vicodin for the really bad days...

its amazing how our bodies adjust to this tx though, but for you and me we must be careful not to harm ourselves more by going too long also. i need to remind myself that if i haven't responded yet to the pegysys then i probably won't because i've been on it for 2 years now...so i may need to change meds anyway. i also know that i can bring back down the viral load to nearly zero again if it comes back after stopping tx by starting the meds again. so i won't be completely lost if i stop and it comes back. 2 yrs is a long time on pegasys and if i havn't cleared by new yrs day, which for me will be 2 yrs and 2 months of straight tx on full dose...i would want to try something else added to it anyway...or stay on maintainance until something better comes along. as long as we keep it undetectable and have good alt and ast reports...and do not progress in liver damage...i think this will also accomplish alot of our desires too. grant it, its best to kill it but i will never know if i killed it until i take the chance and stop. for me i guess i want to find out if the pegysys alone is working. i'm afraid of the idea that the virus may be stronger than the pegasys...so i may "have to" change meds to eventually clear this. so i am trying to prepare myself for that. i just worry my insurance company will not let me start up after i stop. i have blue cross blue shield PPO. which is suppose to be good. i just don't know if they will cover new experimental meds...i will have to go on a trial for nonresponders i guess. hope breakthrough patients can be encluded on those...do you know ina? i'm not so sure we will be accepted.

also, do you happen to know the odds of us "breakthrough patients" to actually kill this virus after the breakthrough? i have only read one big artical on breakthrough...have you been able to find many things on that?...if i ever find more i will of course get you the info. you know we are pioneers in treating this breakthrough stuff. we are really a rare bird!

Swalk! or should i say Quack! Quack probably sums it up for us!

luv, from your fellow bird, ~:O>

sandi

Avatar universal
INA, i'm so sorry you are feeling so weak. that really stinks. i always check in at least a few times a week. i do take trips a lot though, i love to travel and go camping alot...just trying to get out and do normal things as much as possible while on tx...

it does take a lot to keep up around here for me though...i'm not sure if its because i read too slow or what...sometimes i just need a break from the topic of hep c, just for sanity's sake. especially it seems lately i've needed to take some big breaks...i've been coming to this sight almost daily for 3 years now...so i don't imagin i'll ever really go away completely.

have you talked to your dr about extending past october yet? did you get the ok?

Avatar universal
I JUST FOUND THAT OLD POST OF YOURS...I'M COPYING IT HERE AND COMMENTING...I HOPE YOU SEE THIS. (and then i'll be caught up with your posts to me, i hope).

BY THE WAY HERE IS MY EMAIL...YOU CAN EMAIL ME ANYTIME if YOU WANT...BUT I ONLY CHECK EMAILS ONCE A WEEK SO BE PATIENT WITH ME,ok?
LVDBYGOD_U2(erase this)@YAHOO.COM

take out the part that says "(erase this)" i put it in to throw off programs scanning for emails...ALSO, please put your name in the title so i know it's from you...THANKS!

here is your old post to me Ina and my comment to you below it...

"Hello my friend, good to see you back.
I don't think I told you, but I missed ten times more Riba then you did. I never forget to take it, but I came down at week six with Crohn's disease, and basically s..t that stuff right out...there is no other way of saying it. I would say for 2 month I lost half the Riba, and for 4 month approx one third. I can't even begin to tell you how much this bothers me. I really should have stopped tx, but I can be incredibly stubborn. On top of that I was just recently told that I am probably a late stage 3. That was based on my albumin, ferritin, and a catscan.
First I want to ask you, what happened to the possible ascites you had just before going on vacation? Was it ascites, I think you were not sure?
And would you please tell me your albumin numbers, what were they when you had that real bout with ascites, what are they now.
I was told I have to do 3-4 years should I relapse. I want to extend my tx now while the going is good. My doc and I see eye to eye on everything, but I still have to run this by him. I will also loose my insurance on Oct 1, and am trying to get into a high risk pool, so nothing is certain yet. I have that nagging suspicion that it may have been a real viral breakthrough.
I am so pissed at myself for not having stopped at week 6 when all my troubles started. Now were most of my tx is behind me, I am furious...basically I am a mad women, I can't stop screaming at my husband who has been trying in his way to be supportive. I am pissed at the insurance company, the insurance commissioner, and just everything."

***Ina***
i hope you saw my answer about the aeseties from before to you...let me know.

That crones disease really stinks
Avatar universal
DEAREST INA YOU WON'T GET ANY ARGUMENTS FROM ME ON EXTENTION OF TX! concider me in the same camp as you and cutie...that's exactly what i opted to do in our exact situation of breakthrough at 7 months for me. i did not miss very much tx up until that point...not enough to cause breakthrough, i don't think...i did not go under 80,80,80% . so i'm not sure why mine happened...

i'm totally with you on the quasispecies idea although have not done the study on it...so i am completely ignorant of how all that works...i haven't been able to find clear info on it for myself to fully understand.

longer treatment and/or stronger meds seems the only plausible solution for us at this time...its just that for me i have been on a full dose of pegy and riba for two years now and feel that if i haven't cleared yet i need to go onto something stronger. however, i'm not so sure how i will endure it...i'm already having enough problems on this tx and it's strength at 1200mg. so i will probably opt to add something... i wonder if my dr would be willing to add something at this point...before i end tx in January...it's worth a shot to find out...perhaps amentidine??? is this done i wonder...any thoughts on ending with stronger meds to the average dosage? what should i try that would be allowed i wonder...without having to join a trial?

bad news is my dr is growing weary of keeping me on meds...i think he will give me trouble about adding something or going longer...drs cause allot of trouble eh? you don't dare complain of sx or they threaten to take you off early...there is something very wrong with this considering there are good meds for side effects...dr is reluctant to prescribe of course...zanax, sleep aids, pain meds...of course...i get a hard time every time i ask for these...he just wont' give pain pills at all and zanax only if i'm freaking out...and ambien i hate, it makes me feel weird anyway.

my thought is that, let me kill the virus and then if i did get addicted to something we can worry about that later...my life is at stake here...ina i pray for you...give it your all and do what you believe is right...like i said we are pioneers here...there are hardly any that have much experience with treating and conquering breakthrough...i would love to hear from some if they are reading this.

your friend and allie, sandi

Avatar universal
Sandi; I think your reasoning is sound, over a yr on tx past the questionable breakthrough(since it was not reconfirmed) should be more than enough if your bug is going to respond.
The holidays could find you recovering from the meds.
I went 44-46 wks from the official clearing date of wk 26, I could have actually cleared any time bt wk 12 and 26, so it is possible I went 57 wks or more from clearing, but no more than 60 from negative, since I was still detectable at wk 12. I know you and Ina are considering other negative factors such as more damage and wt issues, cryo for her, possible breakthroughs and the dosages issue(missing riba), so the feeling is that the longer tx will take care of whatever is getting released into the bloodstream after becoming clear. But, like you said, if the bug comes back is because the meds were not killing it off, more like keeping it at bay, and the relapse confirms this issue and sends you to the drawing board for a more effective weapon.
It is possible that changes to the virus while on tx, might be to our advantage, actually weakening it instead of strengthening it. Look at Vicki, same meds, 1st time did not clear by wk 12, but now she did. Is it the same virus quaisispecies?
So many unknowns, and all you can do is follow your instinct without letting fear cloud it too much.
Ina, my feeling tells me to consider not only the negative PCR from time of breakthrough, but also the negative cryo test and go at least 40 wks from that one. How far would that put you?
Avatar universal
i just had my cryo checked at my last visit...so i don't know the results yet...i'll let ya know after my next visit at the end of this month...comming  up
Avatar universal
from the cryo negative, since somehow I think the hcv is tied to it at some level, sort of like a feeling that HCV was keeping the cryo active, all farfetched stuff, but it kind of appeases some fears that linger around. It is what I would do if I would have tested + for cryo. It might all be tied up to liver scarring also, so if the scar tissue is releasing virus as it "heals" it gets met by the meds.
but if all that is happening is that the virus is kept at a low level, then you need to find out and switch to another med earlier than later(a yr from now). That would mean a yr of new med, rather than a yr on the old med that is just keeping it low.
It is so much guessing, I wish they had more studies, or they would break things down by liver damage. and use folks with "pecial needs" in these trials!
Avatar universal
argh!
I forgot about it, I really want to know also. My PCP ran some autoimmune tests not sure what they were. I think it is time to go back to the rheumy who found out the hep c...
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