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Avatar universal

People with extreme side effects telling others not to do treatment

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.
157 Responses
Avatar universal
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
Avatar universal
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
264121 tn?1313033056
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.  
Avatar universal
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
264121 tn?1313033056
I could be wrong, but I honestly don't think he was referring to you.  
Avatar universal
Said.......... I keep seeing posts that are warning people not to do treatment because their life was completely miserable while they did theirs.
---------------------------------

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
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