SOC side effect poll

[Bali05]

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 ?

[jusjames]

this thread is like a bad penny

[Marcia2202]

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

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

[nygirl7]

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

[Trinity4]

Truly a revelation.

Trin

[mikesimon]

Fascinating.
Mike

[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%

[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!!!!!!!!!!!!!!

[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.

[Bali05]

thanks Frank .

[Frank J. Perrotta]

I treated for 72 weeks

[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

[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 ?

[jepperone]

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

jep

[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

[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.

[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,

[Bali05]

Not playing at all.

[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

[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.

[FlGuy]

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

[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.

[jusjames]

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

[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 !

[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