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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.
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683231 tn?1467323017
Hi questioning
Sorry to hear of your difficulties. This is a really old thread. If you would like to post a new question to the group go to the top of the page and select the green  Post A Question link that way you can get more feedback from the group.

As far as sides vs hep c I vote for eradicating hep c as the wise choice. I have had hep c for many years and now have liver cirrhosis. You will recover fron your side and live a longer life had you not treated. Long enough to see your child grow up get married and give you grandchildren you may have never seen had you not done you battle with the dragon.

Wishing you the best and hope you feel better and better every day
Lynn
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Avatar universal
I am post Pegasys treatment for 48 weeks. Rib +Inteferon.  I hate that I was sooooooo sick with a 10 year old child to care for.  As a single parent with NO family I was left to care for myself and myself at times that I honestly couldn't.  Sometimes I would sleep after my Friday injection for 16 hours and that poor little guy would constantly be at my bed with a basketball or soccer ball or baseball bat.  Cmon Mom get up!  I did just out of sheer love for my son.  Post , I feel burnt out. I am able to work but forget things can't execute problem solving for a resolution and can no long write detaied documents required for m job .........I have to bluff it.. There are defenite consequendes to this treatment but I am "cured".  So wha'ts worse .....dementia or Hep C.........actually I'm not sure.
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683231 tn?1467323017
Hi
This thread is from 2008 and the person you posted to trinity hasn't been here since 2011.

That being said. If you would like to post a new question select the post a new question link on the top right of the page and post a question or comment to the group it will be better noticed than by adding onto the end of a very old conversation

Good luck
Lynn
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Avatar universal
Amen to that. I'm a 10 yr survivor if you want to call it that. I ended up bedridded due to crippling bone degeneration, muscle degeneration, joint problems, severe bone pain, dry eyes ,flaking skin. I'm now 57 but look and feel Late 70's. Absolutely no quality of life. I had to get on SSI and MEDICADE!! So I'm just passed from pain Dr. to pain Dr. Nobody seems to care. I have so many symptoms. I wanted to live but I was NEVER told about any of the effects or symptoms I would have during and for years after. When I go to Doctors with so many symptoms they look at me like I'm crazy. Medicad refuses 95% of the test I need, so I just lay here. Totally disabled.
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4896357 tn?1360670904
Maybe some genetic testing could be done as it seems that some have no chance of success with these drugs do to a genetic mutation. They dangled that 80% cure rate in front of my face and so I found a way to get tx. I really thought that it wold work for me. After torturing myself with Interferon, Ribivirin and Victrelis for 6 months I never got to undetected. It was all for nothing and even though I got most of the expense reduced and got the drugs for free I still racked up another $10,000 in credit card debt. Side effects were bad but I recovered fully in a few months. Some even say that I have more hair now than when I started! Now there is no cure for me.
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Avatar universal
I did tx3 teleprivar, something with An r and pegasys. IM a type 1 . After a week there was no virus detected. It was painful but worth it
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Avatar universal
I noticed they were gone to after I posted I was thinking wow this is the biggest thread I have ever seen!  Still interesting I guess if it can help others its a good thing!  Have a great day but I need to pay attention.
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766573 tn?1365166466
No offense but speaking of learning how to do research, some of the people you are addressing your responses to are long gone.

Granitekonig (the guy to encourage to do his own research) cleared the virus in November of 2009:
http://www.medhelp.org/posts/Hepatitis-C/SVR---SVR---SVR/show/1096051#post_5053727

Ditto with Trish a couple of months ago

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Avatar universal
WOW a lot of comments here I think the main thing is we live in the USA and were here because of the word "Freedom" most of us we comment on posts and it's freedom of speech however none of us should be here to judge what is right or not right for another person.  Just like Orphan said treatment is right for some people and wrong choice maybe for someone else for example my viral load has not changed in  years I have no liver damage they said they think it would be years and I would likely die from something else however I "Chose" treatment because of personal feelings I have that I will not share right now someone else may choose not to have treatment and that is their right to do so there is no right or wrong answer and we should be here to help each other to get through what ever it takes to finish treatment or to live with the Hep C.  Side effects are different for everyone thats for sure each individual has to do what is right for them- I found this forum very educational very up setting at times and very encouraging and thats the main thing every one should keep in mind everyone is going through something thats for sure.  For me I want this stuff gone but I wont judge the person who decides not to do it...
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2147300 tn?1369689688
Jon,

Actually my piano teacher had cancer in the 1980's and opted not to treat.  She died.  But she lived her life complete to the end with minimal discomfort.  Did her bucket list and then went.  Marvelous woman, she was in her 70's.  Had another associates' wife have cancer of the throat and the treatment was so bad she committed suicide because of the side affects.  Constant coughing and irritation and couldn't talk.  This was in the 1990's.  Their choice.  
On a fresher note my father had prostrate cancer in the 1970's at the age of 43 and opted for a radical prostatectomy. It was a textbook case preformed at MD Anderson in Texas.  He just turned 78 2 weeks ago.  He just lost his wife ( my mother ) in Feb this year and is re taking up flying. Something he gave up for his wife 40 years ago because of a near accident.  He is scheduled for a physical next week and is on his third refresher lesson. He is already shopping for an airplane.  He has purpose again.  
Some life choices are difficult to make as we know but with the advancements in medicine Hep C now has a name - Hep C. With genotypes and specific cure rates.  I am happy to have witnessed the progress over the last 10 years and look forward to clearing the virus this time.  I pray for those that this tx does not work for are able to hang on for the next round soon.  Science is amazing. Choices are personal.
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163305 tn?1333668571
We are all adults here entitled to our opinions.

As a liver transplant survivor I do not think everyone diagnosed should rush out the begin tx, especially with the promising new all oral meds which are currently in trial and should be approved in the next few years.

There is a percentage of people who never know they have hep C, and their livers are never damaged by the virus just as there is a percentage who can die from it, as I would have without the transplant.

Just as the virus varies from person to person, so does the treatment's side effects.

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Avatar universal
Right now.....................This treatment is all we have. Like everything in life, it is a chance. Try it, you may be cured, Don't and you may DIE!
It doesn't get any plainer than that! To hear people say that Doctors are hiding facts about the treatment is ABSURD!
GET A BETTER DOCTOR.
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Avatar universal
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!
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Avatar universal
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.

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Avatar universal
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
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87972 tn?1322661239
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
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Avatar universal
Hello?  what year is it
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Avatar universal
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.
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87972 tn?1322661239
This thread is old; prior to your recent post the last entry was made in October, 2008.

Many things have changed over the years; you might benefit from updating your knowledge of HCV management techniques.

If you’d like to start a new thread, scroll up and click on the tan, ‘post a question’ button near the top of the page.

--Bill
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Avatar universal
That is absolutly correct trish.There was a recent posting from a company that was glorious, they had recieved a grant to test a new drug & clinical trials in Asia. I responded WHAT!!  Asia ,I only wish i had the Asian strain , which is in the 2s & 3s so responsive to treatment. When in our great US of  A we are dropping like flies, & you are spending the money in Asia on a strain there is already a cure for , I just don't get it.
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Avatar universal
RIGHT ON BROTHER< You have been around longer than I. Most Drs. won't treat a !a or B second time, & insurance companies won't pay. & if it didin't work the first time what makes you think it will the second , third fourth, That is exacttly what we are saying , unless your liver is so bad , an you are waiting for a liver ,these patients need to slow it down as much as they can,to buy time. All these viral loads bla bla do not mean a thing , it's the biopsy.My HMO would not even pay for testing after not responding,So I dropped them.My pain medications, and sleeping pills and xanax for stress and panic attacks ,do not come close to the cost of Scott & White insurance premiums,that they said oh no you are a nonresponder, there is no treatment for you , so no need to test.It is the truth, what good is blood work going to do at this point, I am getting disability & I need my liver imaged, not a three more pluggs taken from it.Who knows if they are taking the sample from the right spot!
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Avatar universal
ok you go right ahead & do what the Drs. tell you, and don't listen and do your own research before you take this treament. If you are a 1A or 1B IT WILL NOT WORK & WILL RUIN YOUR LIFE !!!!!!!!You have time do not listen to people like me that has done the research , but did it to late. you have time. Unless your liver is gone. My biopsy was slight bridging fibrosis. I had years & years .to make my disicion, but no I am a take it by the horns and I am going to do everything right & I am going to beat this disease. NOT GOING TO HAPPEN.We know so much more now than we did in 2005,when i was scared into treating.Dr. Gene Lesage , Hepatology , told me see you when you need the new liver. Unfortunate for texans He went back to Johnson City, tennesse, lucky for you all who can see him. He will not give you false hope to pad his pockets. He doesn't need the money. He see's patients one day a week , He does transplants the rest of the week.
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Avatar universal
I must say you are two of my favorite reads (there are others, of course).  Neither of you get whacked out in expressing yourselves and that's refreshing.  We certainly can use more of that here.  

Being someone that has not treated yet, I enjoy the views, opinions.  I see it pays to be vigilant in waiting.  Just wanted to thank you both ..

This is a fantastic forum.  

Jacob
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338734 tn?1377160168
Don't worry! I have a fairly thick skin. I respect your opinion. I wish you had been around when I was diagnosed to advise. I particularly like your insight into dual incision laproscopic biopsy. This has obvious diagnostic advantages.

Just to clarify a little:  I have to admit, that the watchful part was not watchful enough. That IS my point. My advice has been consistently "if you watch and wait, make sure you watch adequately".  I also point out that you cannot may not be able to trust your doctor on this. Not having been to medical school, I did not question my hepatologist's orders. Just came back five years later expecting not much difference. I know better than this approach now, and let others benefit from this experience.

I didn't fail so much as the doctor's plan for "wait and watch" failed. Perhaps you would have prescribed a more vigilant watch than he did, but that was the plan I was given along with the usual adage about dying with the disease. Again, this IS my point: if you want to wait and watch, you may want to be very careful, study HCV so that you will know the proper vigilance required.

As a side note: I think we pay our doctors way too much to have to rely on ourselves for such specialized knowledge and dicey decision making!

I think for those that advicate always treating early, or always wait and watch, you just have to agree to disagree. It is obviously not a one protocol fits all kind of thing.

WalrusSkin Brent


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