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.

[tiredofhepc]

I'll  make it real simple for those who choose not to cure themselves, or at least try, and listen to someone who flinches at the 1st sign of any discomfort.Side effect are a fact of Hep-C treatment
IF YOU HAD CANCER, WOULD YOU LET YOURSELF DIE? Of course you wouldn't!
I am on my second round of treatment. I am responding relapser. Yes it's Hell, but the possible rewards far out weigh the alternative! I have had side effects that are beyond explanation, but you have to try. I am on week 11 and my side effects are starting to subside. 5-10 were the worst. Once the Incivek is done...............smooth sailing for the other 12. Anyone who tells someone not to do it, needs to SHUT THEIR MOUTH! I'm sorry there treatment is/was rough, but so is mine and with out sounding Heartless, this is a deadly disease and you can die. I know. I have 3 close personal friends that have died from Hep-C in the last 5 years. Also, maybe you need to get another Doctor and a better support system! telling someone not to do it is SELFISH!

[Peter2012]

From what I've read on here and elsewhere, it seems the side effects and long-term effects of treatment are usually much worse for those people who are older and especially those who have advanced cirrhosis.

I would not hesitate in advising a 30 year old without cirrhosis to go ahead with the treatment.

However, someone my own age (57) or older with advanced cirrhosis should consider carefully before starting on treatment. The doctor now has reduced my ribivirin at 18 weeks because of low hemo and now at 21 weeks the doctor admits my chances of SVR at 24 weeks are not so good (he originally said the likelihood was 80% and then later said it's about 50% chance of SVR because of my cirrhosis).

He says they should have applied for longer-term treatment, 36 weeks (I'm genotype 3a) when they first saw my viral load was detectable (44) at 4 weeks. Three months ago, he said there cannot be an extension of treatment past 24 weeks, but now he says they should have applied for it at that time.

But if treatment is successful, obviously people will on average live longer.

However, quality of life is also important. Before rebetron in 2003, I was energetic, fit and "young" for my age, and generally happy. After treatment, I was depressed off and on for several years. I was tormented by a lingering itchy rash off and on since the 2003 treatment. I have permanent nasty scars on my ankles from the rash I had in 2003, and I see the boils (infections) I had in my current treatment have also left scars. Being no Ionger physically active after treatment because of severe fatigue, I developed high blood pressure and borderline type 2 diabetes. I gained 25 pounds during the year after treatment, and another 20 pounds during the next 5 years.  

Some will disagree and say it's always best to go ahead with treatment because all that matters is living longer, and so even if there's a 10% chance of SVR you should go through with it.

[JMR7]

I wish I would have seen more of these horror stories before my husband went through the Interferon treatment , it's easy for you to stand and judge not having gone through it yet, the people speaking out about it have gone through it first hand they know the before and the after and the during they are the experts on the subject the Dr.'s have no clue! Just wait until it happens to you and you call the Dr. and ask what to do about it and all they tell you is "HMMM that shouldn't happen, we don't know why your feeling like that, it can't be the interferon, well, lets try this drug or that drug". This treatment is still experimental, well it may cure the hep C, the adverse side effects of the post treatment are more painful and devastating, there is something to be said for quality of life. people should be able to make their choice after being fully educated, that includes knowing the bad stuff too my husband said " if he knew all this before, he would have never done it." All the other people saying it are just trying to help people be aware and educated on the matter God knows the Dr.'s won't tell you all this stuff..you should listen to these people they are the experts (you should be scared, this is scary stuff) and it doesn't just affect you it will affect your whole family. to go into this uneducated is IRRESPONSIBLE!!  We went into this thinking he was going to be cured then he would feel better and get back to his life, that's not how it works at-least before the treatment he had a memory and his bones didn't ache he could sleep, he had an appetite and some strength and energy , though it wasn't his full energy and he got tired quick it was still more than he has now and that's what we thought we were curing....the Dr's will tell you that will only last for 4 to 6 months then you should feel better the patients who went through it are telling you a different story (listen to them) they have nothing to gain from telling their stories. how much are the Dr's gaining not telling ($$$$$$$)... there are some lucky people who get through this without all these problems I'm sure, but they seem to be few and far between. this whole thing ***** and it's a crap shoot ..Good luck in what ever you decide to do.. .....JMR7

[Bill1954]

If someone digs up a thread from the archives and posts on it, Medhelp software ‘bumps’ the thread to the top of the discussion list; just as it does if someone posts on a more recent thread near, say, the bottom of this page. For the observant commenter an hourglass icon appears to the right of the date of the original post; it’s best to watch for this and be aware of dates in here.

--Bill

[jules2551]

Hello?  what year is it

[80mecheng]

Why does a 4 yr old thread come back to life as if the orginal poster is still paying attention?  Forum should lock the thread after 12 months.