SOC side effect poll

Many people on this forum have a lot of personal experience as well as being observing others over the years.
SOC is a very personal decision and there is nothing better than hearing from people actually going thru it.
I asked my trial recruiter about side effects and the deeper I go the more silence I encounter.

Would like to know from all of you out there what you think

according to your knowledge and experience out of 100 people that tx how many will have:

1) no side effects
2) little side effects
3) severe side effects
4) irreversable permant damage

I understand the "everyone reacts differently " part but by now thousands of people have done or are
currently taking interferon/ribavirin so there must be data

What do you think ?

[Trinity4]

I know it's not on your list Bali, but moderate (between little and severe) would be the word I would use to describe my experience and what others have said.

[Bali05]

ok ,out of 100 people how many would you say have

1) no side effects
2) little side effects
3) moderate side effects
4) severe side effects
5) irreversable permanent damage

[desrt]

1) <5%
2) <10%
3) 60+%
4) 20%  (severe defined as needing epo, neup, or a change of SSRI)
5) <5%

Crude guesstimate.

[newleaf09]

I very much agree with desrt's 'guesstimate'.   No sides and permanent damage are uncommon, even though we do discuss our fears of permanent sides a good bit.

[Bali05]

this is great, I hope more people are posting on this

it totally helps of getting some idea to all of us facing tx.

thanks

[tashka]

If permanent damage is so uncommon, why almost everyone who describes his/her post-treatment experience talks about some kind of health problem? Looking all over the forum, I saw maybe 2-3 posts that state that after treatment the person feels exactly the same or better than before.

By permanent damage I don't mean disability or being bed-ridden for life. I am talking about thyroid problems/thyroid removal. chronic depression, memory issues,  fatigue that doesn't go away, aches/pains, fibromyalgia, diabetes, autoimmune issues. All of these can be classified as permanent damage.

Members of this forum are well aware of possibility of permanent sides. I get an impression that they are much more common than what medical community wants to admit.

[Trinity4]

Tashka,

I would pop up and announce in a New York minute if I was experiencing any post treatment side effects.  I was on treatment a very long time and post six months I have no problems.  I'm also two years older so I expect some things to change but for the most part I am very much the same as before treatment.

Not saying some don't experience problems post treatment because we know they do but I've read many more post than 2-3 in which people have stated they are back to normal.

Trinity

[tashka]

I am very, very happy for you. This is the best possible treatment outcome. But I think, you are a minority.

By the way, why would you pop up in New York? Just curious.

[Trinity4]

Oh heck no.  I'd be out of my element in NY.  I'm from South Cackalacky where things are a lot slower and we talk funny.

[Bali05]

I am trying to get a sense from peoples experiences what they preceive

as chances of side effects and severity. Not if you , I or anybody else agrees or not.

Since you are posting on this thread can you please state what you think

the precentages should be in your opinion ?

[tashka]

I apologize if I took the thread off track. Here is what I think (of course, in no way statistically significant).

1) 5%
2) 10%
3) 35%
4) 50%

5) 80%-some kind of permanent damage that doesn't go away
6) 20%-no permanent sides, feel like before treatment or better

[desrt]

I think we need to take care when trying to link cause and effect. I went into tx an overweight, insulin resistant, insomniac and came out the same way. I don't believe either HCV or IFN had much to do with any of those things. When I dealt with my blood sugar and sleep issues, I lost weight, lost the dark circles under my eyes, and felt 100% better. Nothing to do with hepatitis or interferon, as far as I can tell.

[R Glass]

I don’t believe you will be able to get an accurate poll because in all fairness, a large percentage of people that have SVRed with no lingering sx have moved on with there lives and no longer are active on the forum. We that do have lingering problems are still here. This may account for so many members that have post tx related issues

[Bali05]

please just answer the question , or post on a different thread

[Trinity4]

Very true on both accounts and I don't think I'm in the minority.  I've read too many of accounts on this forum and others where people do not experience post treatment side effects and resume normal lives whether they SVR or not and it's actually more a majority than minority.

[Rockerforlife]

10% have very mild SX`s,80% have medium sides,the other 10% are knocked on there as big time.

[Rockerforlife]

This is info ive read on a hep site,think it was Janis....now as for long term problems,havnt a clue.

[R Glass]

Since you asked a question that you already know no one can predict the out come of tx and the sx of 100 people.
1) no side effects
2) little side effects
3) moderate side effects
4) severe side effects
5) irreversible permanent dam
and no other response is acceptable; I would have to say each has a 20% chance,

[Trish77]

I doubt I could answer that question reliably at all.

For example, dsrt's category:
4) 20%  (severe defined as needing epo, neup, or a change of SSRI)

I wouldn't have classified myself as severe, yet I needed epo and ended up on a mild dosage of mood stabilizer to help me with the effects of hyperthyroidism and had thyroid issues while on treatment but still don't consider my situation as severe....which leads to tashka's criteria:

"By permanent damage I don't mean disability or being bed-ridden for life. I am talking about thyroid problems/thyroid removal. chronic depression, memory issues,  fatigue that doesn't go away, aches/pains, fibromyalgia, diabetes, autoimmune issues. All of these can be classified as permanent damage."

I have permanent thyroid issues and tolerable/manageable arthritis onset that I didn't have before treatment however I wouldn't call that "damage" and still wouldn't put myself in the severe category.

I hoped to get out of treatment with no after-effects but it didn't quite happen.  However, what I did end up with is, as I said, tolerable and manageable.

So to me, it's rather subjective.

As for applying percentages out of 100 people, I think you'd need a much larger sampling and you'd have to factor in other things as well, such as pre-existing conditions and what circumstances the 100 you're sampling are from - based on this forum?  Not sure we've ever agreed on whether it's the really needy who are having a hard time who speak up and those who don't need help simply don't post ... or vice versa, that those who are doing better are the posters and those who are doing worse tend to fade into the background.  Could be that the ones who post are simply the more vocal ones.  Not a great sampling to draw from.

Sorry I couldn't just play along and answer the question as given .. just wouldn't even be able to guess at how 100 people made out based primarily on forum contributions.

Trish

[Bill1954]

Boy, I didn’t have *too* many issues through HCV treatment, and as far as I can tell, no lasting ones. I did deal with some depression immediately post treatment, but that might have been attributable to stopping an antidepressant too suddenly; I might have benefited from waiting 30 days before quitting that.

Within four weeks, all my labs were normal again, and within several months, I had no subjective complaints to speak of. If I have any long term damage from interferon therapy, I’m unaware of it.

I’m not belittling anyone else’s experience; I can only relate my own. In so many instances, we’re 2, 3, 4 or more years older when we’re finally done with treatment; so when we take inventory, it’s easy for us to say, “hey, my eyesight was better before that interferon”, or ‘boy, I thought my memory was better than this”. Age doesn’t account for everything, but it’s definitely a player.

Bali, I imagine you’ll do fine; a decent barometer for this seems to be how many people continue work during therapy; my guess is around what, 70% continue their employment in some fashion? They might not like it, but they manage somehow. Some do take time off, and a few get really slammed.

Ok, I’m off to North Cackalacky; so you’ll know where to find me….

Bill

[Bali05]

If you can not answer the question , please don`t post on this thread.

It`s about how you think others are generally doing from what you

know and have seen so far , period. Not you yourself. Very simple question.

[Trish77]

"It`s about how you think others are generally doing from what you

know and have seen so far , period."

That's precisely what I answered and my take on it is that it's not possible to give a reliable answer based on what I've seen and known so far, particularly when basing it on what is known and read on this forum.  I'm talking about the criteria that people are using when rating people and how it's subjective and it's fair to use myself as an example of how the criteria used differs person to person.

It's an open forum and if I feel I want to comment on your question I'll do it.  I really don't care much if you like my answer or not.

[Nomadpixie]

Bali05, I did 48 weeks Tx with no sides, I don`t really remember being on tx because it was so un-eventful....I also had no problems post tx and went on to SVR in 2007...
I know alot of people that have very little or no sides from tx but they tend not to frequent forums or support groups and as someone else said once tx is over they just get on with life....
I will tell you I got alot of stick from others while I was on tx, others that told me as I had no sides I would not clear this virus because everyone gets sides from tx...
Believe me they don`t!..
Px

[terca]

There are alot of people on this forum that know alot more than me.But,in my opinion Bali,you are asking a question that no one can really answer with any accuracy.I am treating now and I can only hope my outcome will be good.I think you need to take into consideration other factors besides sx.You need to decide for yourself whether you can live with the fact that your virus might progress to the point where you won`t have a choice on whether to treat or not.Having sx will always be a gamble.For myself,I have grandchildren I want to see growup ,so I decided to take the risk of bad sx.So far they are not too bad.You need to make your own decision.What ever you decide,good luck to you and take care.

[Trinity4]

That's how I looked at too terca.  I wanted to see my grandchildren grow up. I knew what could be ahead for me but unsure of how MY body would react.  

I recall a member some time ago when I first started treatment who asked a million questions before starting treatment.  They stocked up on every possible aid that would help them through treatment from the advice of forum members. This person assured all they could handle anything that came their way because they were strong and had faced much adversity during their life.
Well, treatment kicked their butt and yes, they handled flat on their back in the bed for the better part of treatment.  You never know, there are generalizations but no amount of advice can take you through treatment step by step.  It is and always will be an individual experiece and once you make up your mind you are going to do it, just roll with it.

Good Luck
Trinity

[FlGuy]

Or, you could be scientific about it. Go to Pegasys.com.  Look for the "Pegasys Full Prescribing Information and Medication Guide". See page 21.

[Trish77]

What do statistics matter if you end up in the 10 - 20% who have difficult side effects?  My docs asked me if I was ready for a year of hell.  It wasn't hell, it was simply difficult.   For others it was hell-ish.  That too is subjective because what each person can handle is relative.  I would rather have the approach my docs took than the ones I see on here who are blindsided when they get side effects that a number of us expected because they were ill prepared.  I was so ready to do treatment that my response to my docs to their question was something akin to "Bring it on".

Those that are left with permanent *debilitating* side effects seem to be in the extreme minority - for the rest of us we all seem to come out of it with some kind of "souvenir".

Prepare for the worst, hope for the best.  And good luck to you Bali, in sorting this out.

Trish

[Trish77]

"we all seem to come out of it with some kind of "souvenir". "

On second read...that is inaccurate.  I would not say we ALL end up with a souvenir.  Sheesh...even that is hard to quantify.

[FlGuy]

I have a retractable ball-point pen with Pegasys and Copegus lettering.  It even has an image of the flying horse.  That's my souvenir.

[Bill1028]

You got a pen?

[mikesimon]

Did anyone's pet(s) have any sides? I think my Kitty Mouse Kitten may have had a few episodes of Peg-Rage but, other than that, he seemed fine throughout treatment.
Any opinions or information would be appreciated.
Mike

[FlGuy]

The way I got it was a little foreboding.  I was signing in at one of those big university hospitals.  At the sign-in place, the patients sign in for all the clinics; cardio, peds, ob-gyn, hep - all of them.  I had to sign a bunch of stuff before going to see the liverheads.  Of all the pens in the joint, they slide me the poison one. I pocketed the pen in exchange for a $600 co-pay.

[nygirl7]

My dog still seemingly suffers post traumatic riba rage to varying degrees (when I don't feed him quickly enough or when I don't feel much like playing wow he goes berserk with that anger)!

But his best friend Mr. Beagle Bailey who treated at the same time appears to have made out without any of the sides as his owner very very rarely posts about it these days.

Therefore I would agree with RonGlass
"a large percentage of people that have SVRed with no lingering sx have moved on with there lives and no longer are active on the forum".

And the people who never had a very bad experience just went on with thier lives in the first place and weren't here to begin with.

[Bill1028]

You have to be happy with that exchange!

A kid threw a snowball and it hit the side of my car.  Does that count as a side?  It never happened before I started treatment?

[mikesimon]

Yes indeed. That would be classified as a "mild side" - assuming there was no dent.
Mike

[Trish77]

Ohhhh!!  How could we forget the Medi-swag?  I still have the insulated cooler bag with the drug company logo and the ice packs and the big blue gym bag!!  I like your pen though....flying horses are kinda cool.

[Bali05]

again it is a very simple question and just an opionion
based on what you have seen by observing others over time

- not about being scientific
- not about being accurate
- not just your personal experience and decision
- not the pegasys side effects list
- and not just what your doctor says

just what you think 100 people who will take SOC will experience in terms of sx.
we have precentages for SVR based on RVR,EVR ect....
there definately are precentages ranging from minor to permanent
sx since thousands of people have done it.
you can call it what you want damage , permanent but not severe
ect...  a sx that does not go away after tx  i think we can all agree
classifies as permanent.
now we can start splitting hairs or just try to answer the question

it seems some have a very hard time directly answering this
question and others have no problem at all

[nygirl7]

How could we forget the Medi-swag?"
Gotta admit that is a very good expression! Medi-swag!

"it seems some have a very hard time directly answering this
question and others have no problem at all - again it is a very simple question and just an opionion
based on what you have seen by observing others over time "

It seems apparently that some people can read the answers and some people cannot. People have answered you as honestly and fairly as any OPINION can be. Opinions are subjective aren't they?

Bali perhaps you have seen now that noone can really answer your question with any certainty.  One month people might see more problems then the next month none. One month more SVRs one month more relapses....At some time you just have to poop or get off the pooper. There are no guarantees on any of it and the people on the internet are not really a good cross sample of ALL hepC patients in the first place.  A poll would say "did you have any post tx side effects" not "what have you seen" - what I consider hardly any side effect at all to the person having it might appear to be a horrendous problem. So I'd forget it while they remembered it.

One thing I can guarantee though is if you have ever seen anyone die of end stage liver disease - the possible side effects that someone might be left with after treatment are a day in the park comparitevly.  That much I can say with certainty.

[Trish77]

"How could we forget the Medi-swag?"
Gotta admit that is a very good expression! Medi-swag!

Yeah, pretty cool term, I liked it when I heard it.  Wish I could claim credit for that bit of wit but it was Staind Glass who went through the R1626 trial with me, a fellow Canuck from BC in the movie industry there so you can kinda see where he would come up with that.

[R Glass]

Would like to know from all of you out there what you think

according to your knowledge and experience out of 100 people that tx how many still have their Medi-swag?"

[brianmo]

When I talked with my doctor about starting Tx I said, Doc, what would you do if you were in my shoes??? He said he would not treat. He treats people all day with side effects from Inter/riba. What went through my head was, of course, the ones who feels alright do not come in to see you!  Much the same with this site. If I cleared and had no more sides, I would not come back other than to say the good news. I appriciate those who still visit the site like NYGirl, etc...

[jdwithhcv]

I never got any medi-swag.  Now I feel deprived!

Bali05, try to relax!  We ARE answering your question.

jd

[nygirl7]

Una they never gave you a sharps container you could have saved that beautiful red box as the perfect souveneir!!!!  ;)

Thank Brianmo - for those of us who were given the chance to succeed by the people who were in here when we started...it's worth coming in to pay it forward and watch other people get SVR!

PS What do doctors know about hepc anyway ;)

[Bali05]

my doctor says pretty much the same.

He had a case that died from complications of tx and he is telling me

only to do it if my back is against the wall meaning labs getting worse ect....

My labs are actually getting a lot better recently normal LFTs ect...

so he recommends "watchful waiting"

One thing that bothers me a lot. You can walk into pretty much any hepatologist

office with dx Hep C they will ALL push for SOC the minute you walk in. It is just not

very trust evoking to me no matter how much you like that clock with the flying

horse behind their desk.

The fact is you might SVR but you also might get much worse quickly without SVR.

I was just up for this trial and I could not get in.

At first when they offered the trial I was told that what I wanted to do Alinia+SOC

had poor results. Than they found out Roche had a problem with me taking Alinia

and now all of a sudden they recommend Alinia+SOC like I should have done it

yesterday. (they don`t even have my recent labs and scans ect.)

On top of that half a year ago when I wanted to do Alinia they did not even bring it up.

It is what it is but these are very personal decisions that require thourough

consultations since we are all different. Maybe it was a blessing in disguise that

the trial did not happen for me. I just don`t make a good lab rat.

[nygirl7]

I've never heard of anybody dying of complications of treatment. Not to say that it couldn't happen but if you had a doctor who was on top of things (ie: cardio testing first etc) it shouldn't happen.  

People can die of complications of even anesthesia at the dentists as happened to my Uncle - but to live life always fearful of the worst isn't something I'd rather do.

I've watched people die of end stage liver disease that came on quickly - believe me there is no comparison to that horror. That scared me much more.

So after all of this now that you are not in the trial once again you are not treating? You do whatever it is that feels right for you but honestly I don't  know how many times to hash this all out any other way then we've arleady done.

[tashka]

Fortunately, Bali is far from end stage liver disease. There is no need to rush into anything.

[GSDgirl]

someone told my brother that every that he knew that treated was dead, I am not.  Maybe those people still partied hardy?

I know someone that commited suicide, I didn't and never had the urge.

Stuff happens sometime and sometime it doesn't

Honestly, I think that you should make up your mind one wat or the other and go with it.

Denise

[Trinity4]

Since there is no need to rush into anything Bali should have plenty of time in the future to do his own research on statistics, side effects, percentages, etc so he can make a decision that best suits his needs when or if the time ever comes.

Trinity

[jdwithhcv]

As you noted at the outset, we on this forum have a lot of experience with SOC, something your doctor does not share.  If your doctor is telling you that you can die from the side effects I suggest you find a doctor who has a clue.  The one you're quoting sounds like he doesn't.

Of course, if your intention was really just to bash SOC, perhaps you can see that this is not the venue for that agenda.

I'm just sayin'

jd

[Bali05]

one way or another first of all thank you all for your advice.

I am abosultely not interested in making this a pro/contra tx discussion

Just having a hard time flipping a coin on my health !

[jusjames]

i just noticed my fish are all swimming anti clockwise they have always swam clockwise before , bit odd ! must be a **** up!

[Bali05]

you got it all wrong !

I am glad I have this doctor as my general physician and he is actually quite knowledgable.He would give Alinia off label rx when nobody else would have.
If it were not for him to this day I would not know I have Hep C .
He is particularly worried about interleuken 10 with SOC.
We are taling cognitive problems here.

[FlGuy]

More doctors should be worried about interleuken 10 with SOC. Good thing he's knowledgeable.

[epiphiny]

I have to join in with all the voices and say it such a personal experience that I do not know how it could be quantified.  Perhaps the real question is risk versus gain? In other words, was it worth it?

For me, I underwent 2 treatments.  One with SOC that did not work for me.  I did not have any residue or lingering side effects from that other than feeling depressed that I didn't beat the dragon.  In every other way I felt better than  prior to treatment.

Second treatment, twice as long and with a study drug that you already know about.  This time it was successful.

There were times with the treatment was difficult for me but if you ask me if it was worth it I say YES. YES YES YES.  I feel great now.  My life has changed for the better.  I am able to participate in my life more fully than before treatment. I no longer have the dragon. I won! I am no longer a victim or a patient.

It didn't happen instantly but I have made my way to a place that was better than before.  Do I have any lingering side effects?  Well I don't know whether the few things that I have are from tx or from the aging process and I will probably never know.  All I do know is, that for me, treatment was worth it.

Epi.

[GSDgirl]

"He is particularly worried about interleuken 10 with SOC."

You are just playing with everyone............right????

http://en.wikipedia.org/wiki/Interleukin_10

Denise

[Bali05]

Not playing at all.

[becksta29]

1) no side effects
2) little side effects
3) moderate side effects
4) severe side effects
5) irreversable permanent damage
my personal experience
most of my tx sx was number 3) and at times....not very often it was number 4) during tx but nothin i couldnt handle,

[Trinity4]

Swimming counter clockwise sounds like an extreme case of Peg-Rage to me.  Perhaps a tiny crumbling of antidepressant sprinkled atop the water will turn them around.  If not you can always send them for a final swim in the loo.  
Fish swimming backasswards?  Oh, the horror.

[jusjames]

i think i may try sprinkling some A/D's in the water before the rather final act of the flush!,
top tip!
thanks

[jepperone]

I would have to say (2) and everything else is attitude.

jep

[Bali05]

I realize that the poll should distiguish between treating
24 wk vs 48wk.
So out of 100 people how are sx when treating 48wks ?

[Frank J. Perrotta]

I have been using this as my tag line on some forums:

"Intensive cytokine arousal for a prolonged period of time is bound to leave its mark on the body, mind and soul."

This was posted by Califia on a thread many years ago.

When I show this tag line to any doc all they can do is agree.

As others have already said - those that are loudest have the biggest problems. Both of my GPs say they are seeing more and more patients with "Post-Interferon Syndrome" and I am in a pretty small town.

It was treatment and not C that disabled me so you know where my personal vote goes.

I am glad that we are at a place that treatment isnt "pushed" the way it was when I was considering my positions.

Best of luck in your decision no matter how you come to it.

f

[Frank J. Perrotta]

I treated for 72 weeks

[Bali05]

thanks Frank .

[R Glass]

  I agree with Trin’s solutions. If the Antidepressants don’t work you have the task making the tough decision of quality versus quantity. In other words do they spend the rest of their lives swimming backwards being miserable or spend the last few moments happy swimming clockwise as the toilet flushes.

[cb867]

All I can say is my sx didn;t start until around 10 wks, Then they were pretty bad. About all you hear about. I stopped  Mid Dec. Now I feel like I never had the tx. No long lasting sx. I have no permanent effects!!!!!!!!!!!!!! YAH!!!!!!!!!!!!!!

[Bali05]

Answer from hepatologist office :

How are the average side effects for 48wks tx percentage wise you see out of 100 people?

1) no side effects  5%
2) little side effects 15%
3) moderate side effects 70%
4) severe side effects 10%
5) irreversable permanent side effects <1%

[mikesimon]

Fascinating.
Mike

[Trinity4]

Truly a revelation.

Trin

[nygirl7]

This is starting to remind me of Lost.  Lost in Space that is.

[Marcia2202]

can someone please explain interleukin 10, cytokine arousal.... etc...

I have no clue what it does and what effects it has

[jusjames]

this thread is like a bad penny