People with extreme side effects telling others not to do treatment

[granitekonig]

I'm new on this board and have been doing a lot of reading. I've read every thread on here going back many pages. I keep seeing posts that are warning people not to do treatment because their life was completely miserable while they did theirs.
I can understand that treatment can be very difficult for some people, but I think it's IRRESPONSIBLE to the health of others to scare and warn them away from the ONLY treatment that works. It actually makes me angry. I don't know if anyone else feels this way. I'm getting ready to go on treatment and have read about all the side effects. I'm willing to take the risk. The last thing I need to read is someone saying that treatment is WRONG and people shouldn't do it. Writing to vent about your horrible experiences is one thing; Telling others NOT to do treatment is wrong. There are plenty of people out there right now who are riding the fence and trying to build up enough courage to do treatment as it is. We need more people to DO the treatment, not shy away from it.

[Trinity4]

Yes, I agree there are lot's of things to consider before treating.  The horror stories are out there and as you said, it's one thing to share your experience and another to frighten people, especially if they have advanced fibrosis and should treat but won't because of what they read. I get upset by the posts that read don't treat unless you are close to dying.  That is wrong to say to people, and those that are currently on treatment don't need to hear that.  This is a public forum and everyone is entitled to share their experiences.  Just like everything else, sift through the minutia and logic prevails.
Good post granitekonig
Trin

[Deb_c430]

There are a lot of us who are doing treatment,    some of us more than once,  

We all respond differently to treatment,  for me the first two times were not so bad, I didn't feel great, but continued to  work and carry on. This time the drug is different, harder on my body.  

With that said,  every BODY is different,  we all have  different chemistrys, different attitudes, different concerns, that need to be addressed. Age matters,   preconditions,

Each person should  treat indvidually,  I think sometimes that more you read of negative sx, the more expect to get them, so do so.  But that is entirely my perception.  

Get the knowledge, learn to be strong advocate for your self.  Don't get angry find a balance, fear is something  natural to have we all go through it,    

Take care and best wishes,  and remember not all of us are negative.

Deb

[alagirl]

I think that its absolutely ok for others to share their experience with treatment, and to even give their opinion about the wisdom of treating, or of treating at a certain time (and I say this as someone who is fairly unabashedly pro-treatment).  To TELL people not to treat is giving medical advice.  

Sharing experience or encouraging someone to contact their physician for help with side effects and to ask for xyz, or to suggest they consult another doctor when we see someone whose treatment appears to us to be very atypical is appropriate I think.  But there does need to be a physician in there somewhere when we are giving tx advice.  

[jmjm530]

Offhand, I can't think of a single member -- regular member anyway -- who has warned people not to do treatment. If I've missed something, please point it out.

What I have seen, and been part of myself, is to share with others the belief that those with little or no liver damage do have options, and one option is what we call adopting a "watch and wait" strategy where we lead a liver-healthy lifestyle while being monitored by a liver specialist in the hope that newer drugs in the future will offer us a better treatment option. Sharing with others the concept of options, as well as sharing our treatment experiences, isn't "irresponsible" and in fact I think it would be irreponsible not to.

This place is for sharing information, personal experiences and advice. Hopefully your name (granitekoning) doesn't suggest that things are written in stone when it comes to treating (or not treating) hepatitis C. Cause they are not.

As to "We need more people to DO the treatment, not shy away from it", what I think we need are more people to make an INFORMED choice about treatment and not get scared into (or out of it) by anyone.

Good luck with your treatment. Hopefully you researched the pros and cons well.

-- Jim

[alagirl]

I could be wrong, but I honestly don't think he was referring to you.  

[can-do-man]

Said.......... I keep seeing posts that are warning people not to do treatment because their life was completely miserable while they did theirs.
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Could you please point those out? All the time ive been coming here i don't recall any members saying that. But then again i don't come here everyday........ Best to you

[jmjm530]

I'll also add -- and forgive the generalization but I only have your profile to work with -- that since you're a geno 3, you're much luckier than most here. You have around an 80% chance of being cured (SVR)with only 24 weeks of treatment. And if you become RVR (UND at week 4) you reasonably could shorten that treatment to 12 or 16 weeks and still have much better odds of SVR than for genotype 1's.

Genotype 1's, the majority of us, only have around a 40% chance of being cured with current drugs even if we treat for 48 weeks. That's a BIG difference in terms of risk versus reward compared to genotype 2's and 3's.

Now try this on --  right now there's a drug in trial for genotype 1's showing close to 60% response rates in only 24 weeks. Hopefully, that drug, Telaprevir will be on the market in a couple of years. Do you really think it's irresponsible to share an opinion that those geno 1's with little or no liver damage should consider waiting for these drugs? What would you advise a geno 1 friend with little or no liver damage? Would you give them both sides of the story or just tell them to treat?

[jdwithhcv]

Perhaps this is a response to a recent post that recommending doing tx only as a last resort.  I can't recall who started the thread but it was emphatic....

[zazza]

I must say I was surprised when I started treatment that it was not rougher, that it was doable. Had I understood that, I might have treated much earlier.

[jmjm530]

Ala:
I could be wrong, but I honestly don't think he was referring to you.
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I didn't take the post personally but since I can't remember anyone here universally warning people against treatment, I just assume he was referring to those who offer the opinion that Watch and Wait is a reasonable option for those with little or no liver damage and would be a personal choice. I do fall into that camp and personally did adopt a Watch n' Wait approach myself before treating.

[Trinity4]

This was the post I was referring to.  Not a regular.  She did state later she did not take into consideration people who were trying to avoid ESLD and it was insensitive of her to not take that into consideration before posting

DixieCups
The bottom line, in my opinion is.....DO NOT TAKE the Interferon unless you are already close to dying. If you do, you'll feel like you're dying after it's all over with. NO ONE TELLS YOU THAT!!!

[jmjm530]

I missed that post, thanks for digging it up. Everyone is entitled to their opinion, but that post is certainly not representative of the views expressed here and in fact is quite an anomaly. So when Granite says "I've read every thread on here going back many pages. I keep seeing posts that are warning people not to do treatment because their life was completely miserable while they did theirs" I still don't know what he is talking about as posts like Dixie's are so few and far between.

[rita863]

I can only give you my personal experience.  I am Geno type 1, I started TX Jan 4th, I was UND at week 12.  I am on week 41.  

I have had my share of sides, some mild, some really bad.  I have also worked through TX with taking some days off here and there.  I just recently cut my hours a bit.  

My personal thoughts are this.  Its my chance for SVR, so if I have given up one year of my life to be rid of this, then its one year.  I was able (with alot help from my friends here) to push through the hard times.  It like peaks and valleys... I have had a couple of weeks that were fine and then a couple that were terrible, and then back again.  

Some here have treated several times, and for longer periods of time.  They are the heros here, those are the post you should read.  Dont read the negative ones, you may be fine.  Some of my friends have very mild sides.

I would never tell anyone not to treat, in fact I have a brother who has hep c and will not treat. I give him informaiton, and tell him of the sides, but its his personal choice.

It seems you have read everything, and you are not walking into this treatment blind.  You have educated yourself and you know what sides may happen and may not.  You are one step ahead.

Best of luck with your TX.

peace
rita

[Trish77]

This is the thread that I would think was the most emphatic I've seen against treatment yet and not just suggesting "watch and wait" either, Jim....more like hang on by your fingernails to avoid treatment if you have to until you have absolutely no choice.  

http://www.medhelp.org/posts/show/655268

With a headline that says "Treatment worse than disease, last option only" .. I'm not too surprised to see this particular thread here.  Out of all the people who have SVR'd .. all the people who've been through treatment repeated times....does that sentiment actually apply?  "Treatment worse than disease, last option only"?  I'm not saying you agree with that sentiment, Jim, however it is the extreme extreme of "watch and wait" and to have someone post a balancing opinion to that, to me, is completely understandable.

I'm all for posting our experiences and that is that person's experience.  But to suggest it is like that for EVERYONE .. well, that is myopic.  I don't know if it's irresponsible, one person's treatment experiences are as valid as another person's.  However...if a person makes a treatment decision based on ONE thread .. when there are MANY threads from all points of view....that is downright.. well...lunacy.

There are many reasons that people treat with low level liver damage that are very valid to those of us who have and are doing so.  By the wording of that sentence, that obviously includes me.

There are many reasons those that have treated may fall into the "watch and wait" camp too.

Undergoing treatment is definitely an incredibly serious undertaking and I do agree that nobody should be scared in or out of treatment but should seek out enough information to make an informed choice.  That means not relying on doctors only as they'll provide information from the bias of their own position.  Many of us can attest to that on the part of our doctors.  

Trish

[Isobella]

I am guessing this is an instance of someone telling people not to treat.

http://www.medhelp.org/posts/show/655268

Unfortunately the person posting had some extreme sx.

I have to agree with zazaa, I am surprised that tx is not rougher.  I attribute that in part to everything I have learned here about managing sx and LOTS of luck.


Granite:   I don't regret at all deciding to tx. As a geno 1, grade 1 stage 0-I decided to enter a clinical trial.  I have another family member doing the watch and wait thing.  Ya just gotta do what is best for you in your life-if the damage level allows time.  And we are all here to support you on the journey :-)  I wish you the best.

Isobella

[Trinity4]

Maybe Randy1499 too.  He had a really bad experience.  But for the most part, no, I haven't seen beware to you will die to go insane posted regularly.  I just appreciate Granite at least expressing his opinion.  Many are so timid to say what they really feel.  

[zazza]

What is even worse than the thread Trish mentions is when newcomers with cirrhosis start a thread trying to decide whether to treat or not and they in response get a post like the above "treatment worse than disease, last option only", which could scare anyone from doing tx. I saw this happen recently, and to me it was totally irresponsible (if I dare to use that word again). Treatment might be bad for many of us, but thankfully it is only truly totally intolerably horrible for a few of us.

[jmjm530]

Trish: "Treatment worse than disease, last option only"?  I'm not saying you agree with that sentiment, Jim, however it is the extreme extreme of "watch and wait" and to have someone post a balancing opinion to that, to me, is completely understandable.
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A "balancing" opinion to 'Watch n' Wait" is to treat regardless of liver damage. Many, including our Doctor Dieterich, are in this camp and have expressed their reasons why. I've recapped them myself several times.

"Granites" post, however, is not a "balancing opinion" as you suggest. What he's doing is to criticize, and more important to *categorize" the opinions of others on the subject, as he calls them "irresponsible".

Read his post again -- he's not referring to an errant post, but appears to be referring to a category of posters who speak up in one form or another about some of the treatment risks.

[sfwandwow]

I see tx as its to each's own.. if u do thats great, at least if successful or not u are giving ur liver a chance to rest and re-generate overall.. so overall its base on the personal individual and there physician, we arent Dr's here.. we are just giving our own experience... i did relapse and i will try again down the road, its not a death sentence if u are 2 or 4 or whatever.. just trust ur physician and and GOD as ur comfort..

[portann]

Hi Trin,

I remember that post from DixieCups - she apologized sincerely in her follow-up post, as you mentioned, although I personally didn't think it necessary. I think it's great to hear her experience without censoring her, which you'd personally never do.  Granitkonig, on the other hand, seems to be gunning instead for censoring the negative. There is room for all points of view concerning our personal experiences with treatment. (Politics and real estate are separate debates!)

To Zazza:

Zazza: "I must say I was surprised when I started treatment that it was not rougher, that it was doable. Had I understood that, I might have treated much earlier."

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With all respect, Zazza, I must say I was surprised that treatment can be as rough as it is. I have a built-in positive outlook and tend to expect the best from life but whew.

Having had my deliveries (as in babies, both posterior presentations, turning in utero) with zero medication, dental fillings done with zero freezing, surgery with zero follow-up pain killers, I'm a bit impressed at how nasty SOC has been for me. For a girl, I've always had a lot of machismo when it comes to pain management but this is testing me and my SOC is not for a day or a month but for forty-eight weeks.

I'm glad it was better than you expected but for me it's worse.  I thought I could walk through the park on this one but I find myself instead occasionally wanting to jump off a cliff due to the unmitigating bone pain. Bad luck, maybe, I should have stuck to natural childbirth.

Now I wish I had waited for something new, better and shorter for 1A's, since I had that option, based on my liver condition. My advancing age made me feel desperate, so here I am, in week 21, SVR is far from a sure thing and if I had to advise a young 1A with little liver damage, I'd shout from the rooftops that he monitor his liver and wait for surer and quicker protocols.

For Granitkonig, it's different, since he's a different genotype with different and better prospects.

By the way, I survived natural childbirth by singing my way through the pain but it sure doesn't work for SOC, even when I sing 'Stand By Me'.

And I feel so lonely on treatment for a silly sunshine girl like myself. This was a price I never expected to pay.

[Trish77]

"Granites" post, however, is not a "balancing opinion" as you suggest. What he's doing is to criticize, and more important to *categorize" the opinions of others on the subject, as he calls them "irresponsible".

You need to re-read what I said, Jim.  

"Trish: "Treatment worse than disease, last option only"?  I'm not saying you agree with that sentiment, Jim, however it is the extreme extreme of "watch and wait" and to have someone post a balancing opinion to that, to me, is completely understandable."


I said it's not surprising to see a thread as Granite's posted as a balancing opinion to "that".... a thread titled ""Treatment worse than disease, last option only".  I didn't say he Granite's thread was a balancing thread to "watch and wait" .. unless you equate the "watch and wait" position with "Treatment worse than the disease, last option only" and, correct me if I'm wrong, regardless of how strongly you feel about "watch and wait", not even you would go THAT far.

And I will say this from my own perspective.  I put in alot of time and weighed out my options in very much depth before deciding to start treatment with low liver damage and I do not regret my decision.  Where I am at now at Week 32  with a list of drugs that boggles my mind and having to juggle three different injections a week and bottles of various kinds lined up on my fridge, managing which ones get taken on an empty stomach, which with food, which in the morning, at night, on specific days... one month ago, I was NOT in this position and now I am.  I do have a new respect for the "watch and wait" position even though I do NOT regret my decision to treat with early stage liver damage for all the reasons I went into this now in the first place.

I think we ALL agree that being as well informed as possible is what is important and respecting someone making the best decision for THEM  with their OWN variables .. not OUR variables...is what is important and helping people with the information they're looking for to make those decisions and then supporting them is also important.  Don't think any of us disagree on that.

Trish

[zazza]

See how different our experiences can be! I had problem getting through childbirth WITH medication. Give me treatment anytime compared to the horrors of giving birth! OK the result of giving birth makes it worth it.

[jmjm530]

I just re-read ""Treatment worse than disease, last option only" and what I found was a very sad and heartfelt account of one person's treatment experience and based on that a heartfelt warning to others. I respect the posters right to say what he did and let me ask you -- if you had the same experience as the poster, wouldn't you have felt compelled to post the same?

My pik with "Granite's" post again, is that it is not a "balancing" post as you suggest. It's simply a post criticizing people for posting their experience and opinions.

[portann]

Granitekonig: "The last thing I need to read is someone saying that treatment is WRONG and people shouldn't do it. Writing to vent about your horrible experiences is one thing; Telling others NOT to do treatment is wrong. There are plenty of people out there right now who are riding the fence and trying to build up enough courage to do treatment as it is. We need more people to DO the treatment, not shy away from it."

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Your opinion is only that, your opinion and my opinion is that I find you rather immature to newly arrive here, stand on a pedestal and condemn members for sharing their experience as they see it.

You consider it 'irresponsible' to shy away from treatment. My own hepatologist, who has treated heppers exclusively for over twenty years, is against patients treating except if necessary. He was against my treating.  Is he irresponsible?  Given that newer and better protocols are around the corner and the outcome at this time is too uncertain in many cases,  should he have censored his point of view from me? Is there no room in your world for his point of view but only the one you want to hear?

There is a video that you might like on another website. In it, the actor is dressed to the nines, smilingly serving an elaborate  breakfast he just cooked for his children. Of course, he's on interferon and ribavirin, just sailing through joyfully. I sincerely hope that this is your experience.