Ha. I love this. A simple list addressing every vital function or organ of the body. They don't even bother with the standard "boiler plate" hog wash sentence that most drug information monograms have.
It is a sentence that goes something like this:
"Side effects that go away upon cessation of treatment"
That is probably because most of the side effects feel like they linger forever! But hey, what you gonna do?
My Wellbutrin (Bupropion) specifically offers this assurance:
"Side effects go away within about a week after stopping this medicine."
Yes, these medication do have side effects, some that continue after tx for some patients. Like many medications, hearing the commercials and reading the list of side effects can be very intimidating. I also agree that the follow up from the doctors after eot is less than desirable and the lingering side effects probably are under reported.
It's unfortunate that you are experiencing the collateral damage from tx, but I noticed almost all your posts focus only on this. I'm not sure why you're trying to scare people on this forum with all the similar negative threads you recently posted. This doesn't appear as an attempt to inform, it comes across as an attempt to scare.
Here is a class line from self attributed "interferon expert" psmike59. Next he'll be blaming interferon for the world-wide economic collapse.
"Are you guys seriously taking it. I pray for all of us. Hope something comes because after all that the treatment didn't even work. Waste of money and time and devestated my life, almost broke up my marriage. Unbelievable."
We agree on one thing..."Unbelievable"..... indeed!
I am very very sorry you are having sx after finishing tx.
I treated in 2008 with Peg and Riba, I was UND from week 7 on.
I relapsed 6 weeks after finishing tx and never felt right. I also blamed it entirely on the tx as I felt just fine before tx in 2007. I am now 2 months post triple tx and I have not felt this way in years. Evidently HCV is an insidious disease and it affects us in ways that we do not know.
While the first tx did make me feel worse than I ever did and the symptoms did not go away, neither did the HCV. Now that the HCV is gone I feel so much better. It is like a miracle. Yes the tx was hard, difficult, I thought I was going crazy. If the people on here had not helped me through it I would never have made it. I will always be grateful to everyone here. Now that I am UND I am feeling so much better, it was not immediate however I now look forward to the new day.
I hope you can find something to help you. Not know your history I can't say anything else except that I wish you the best
"I think some fail to realize how sick we really are. The asymptomatic nature of HCV is deceiving. One minute your floating down a river, the next your going of a waterfall. With HCV you never know where that waterfall lies. "
Perfectly stated, James. I could not agree more. Many people just don't realize the insidious nature of Hep C, always lurking, just waiting for the opportune time to show its ugly head and do its damage (and not just on the liver either).
Maybe it would be a good idea then not to read posts about side effects and dangers, then.
For those who contemplate treatment, it might be a good idea.
It seems that a lot of people have no idea of the isolation, fear and overwhelming sense of loss one who has been hammered by interferon feels. It makes you lose your identity and sense of who you are in your own skin.
That's right, Laura~ I read his other negative comment this morning, but had to run off, and throw my son his 10th birthday party, so I couldn't reply, but I knew many others on here, like Hector and OrphanedHawk would set the record straight.
It is better to treat hep C, before it gets to the point of no return. It is called "The Silent Killer" for a reason, because it tends to stay dormant for 20 yrs, and then, watch out. Mine flared up when I turned 47 yrs, but I caught it in time. Other people have had to go thru liver transplants. I have purposely chose not to read about the side effects of Interferon. I had only done Interferon and Riba, for 4 weeks, when my viral load went undetected and my elevated enzymes went back to normal, and that was BEFORE I added the Boceprevir, because we get a 4 week "lead in".
How can I knock a med, that has done all that, in such a short time?
I'm sorry that psMike had a bad experience with it, and hopefully he will be cured, with the newer treatments, but it is not thoughtful, to scare people onhere, who are in the middle of treatment. I dont see how that can be "supportive"~
Yikes..step out for a couple of days and I see the Interferon kaw kaw has hit the fan again. Are we still using it or was there a breakthrough in the last few days..Hope we are ..it is great stuff and has saved hundreds of thousands of lives.
Oh hey.. mike
p.s ..congrats on you SVR... I can only" imagine" what that is like
Wow can't believe the scare tactics are on here again. You are bitter bitter people who NEED to move on with your lives. You are only making your own lives more miserable. I wish your souls peace. One thing is for sure, for those of us who are trying to improve the quality of life, we deserve peace. I'll say it again. your ulterior motives have NO place her on this forum.
Hate to admit it, but I actually look forward to my Inf shot.
In the earlier thread (this morning), psMike had said that "only 5% of people with Hep C actually die of it". I think I would like to see the link, for that fact. I actually know a few people, who have died of Hep C, and according to my labs, I was headed towards cirrhosis, and I havent touched booze in 20 years, and have an incredibly healthy diet, and life-style.
I apologize to you or anyone else for my anger and if I offended anyone at all, even the two my comment was meany for. I chose to go through this treatment and use this forum to perhaps help me along the way. I was hoorified by what I read in this morinings post by them. I know the seriousness of this treatment and I do not need or want someone to try to scare me away from treatment and it sickens me that they are trying to scare those contemplating treatment. I know everyone has their opinion, but I truly believe posts from people like them are not designed to help anyone.Maybe I chose the wrong place to seek help and advice. Again I apologize if I was out of place not my intentions whatsoever.
"About 130–170 million people are chronically infected with hepatitis C virus, and more than 350 000 people die from hepatitis C-related liver diseases each year."
I googled this up from a WHO article, which also had the 5% stat, but still, if 5 out of 100 people die of Hep C, that is way too many, and that is why people choose to treat it.
The good news is, finally Hep C is getting more publicity, and the Drug Co's are seeing $$'s in it, and advancement is being made quickly.
My hope is that we will all be cured, in the long run~
Dawn, you aren't alone in the way you feel and there's no need to apologize to anyone. This topic comes up frequently, and these opinions are often presented with little data to back up the claims. Since this is an open discussion forum, we all have the right to express our opinions, but when done so with the intention to cause fear or cause someone to change their mind, you do have to wonder what is their agenda. Especially when they just joined the forum after the completion of tx. We are fighting for our lives, undergoing some very rough tx, so reading these attempts to scare people conjour up some very emotional responses.
I find it sad, there can be TROLLS, in a place people turn to for hope & personal medical advice.
I noticed he never came back....just stir it up & run ........quite an individual...
Thanks for the warning all........never would have figured it here........
i agree that his thread was very disturbing for people on treatment. we're trying to rid ourselves of this dreaded disease. we don't need to be scared about the meds we're on. thank god for this forum. it has helped me so much. i don't think i could have gotten this far (44 weeks) without my cyber friends. thank you guys. best wishes. belle
I used to run a channel, on YouTube, where I made silly videos, etc, and made alot of good friends there. I also ran into tons of Trolls there, and I could never figure out what pleasure they got, from enraging people, and hurting people's feelings.
Luckily, here on this Forum, we have a Moderator, which helps alot. There is a button, to report abusive behavior, or you can e-mail the MedHelp team, as well, and they actually respond~
Although the idea that a person would post things with the purpose of scaring people is hard to grasp, there was a member here who got thrown off the forum who was often posting about the horrors of interferon while having never experienced it and claiming to have no liver damage.
This former member, was pushing the oral trials, one trial in specific, using scare tactics if needed to get people to do this one trial.
Some here thought this member was working for that company or had a lot of stock, or some other ulterior motive.
I think this psmike may be this former member, but of course I have no proof.
Listen to people who have been through tx.
Not ones who only post negativity.
Nothing in life is all pros or all cons.
the only comment I have on this is that treatment was not a trip to hell close, but now that its behind me really doesnt seem like it was that bad. The anemia was the worst. BUT if it rids me of this crap it was worth every miserable day I had during treatment. Would not ask to do it again but we have not many choices to cure this so we do what we have too.
Dawn, it suddenly hit me when I read your post...(I can be slow on the uptake these days, sorry.) I couldn't understand why everyone was so enraged about what they had said...I tend to agree with them. But then while reading your post It hit me that the majority of the folks on this forum are using, suffering with (and getting the cure with) Interferon. It just slapped me with the realization that it is the height of insensitivity to make these statements to people who have chosen or had no other option but interferon. It would be like someone telling me my drug study is very risky to my health.(and it may be) That the orals down the line will wreak havoc with my health. Suddenly I got it. So sorry.
No the truth is not to hard for this forum, what seems to be hard for certain people in common sense... As bocep said years ago we had to treat much longer, 48 weeks 72 and even 2 years was pretty common. Then you relapsed and had to do it all over again. I've done a total of 134 weeks of riba and interferon and so has many others. Now the SVR rates are as high as 75 to 80%, before they were 40 to 50%.
24 and 28 weeks are way more common now and you gain SVR, some still need 48 weeks but again SVR rates are at a all time high, Now thats the dang truth. Some of you don't want to hear that you just want to bash. Until all oral drugs cure everyone it is what it is and many of us are alive because of it, some of you never had to get to being cirrhotic first. Why not enjoy that?
just my 2 cents. im last day of week 10, and yes the incivek sx are cruel. but! at grade 3, stage 3, the alternative to tx was completely uacceptable. 4 week und and looking forward to my 12 week tests.
I'm not sure about pointing out the negative aspects of Interferon is all that insensitive but I agree it is fruitless on a forum where everyone is taking it in hope of recovery. The implication we are unaware of the risks is a bit offensive as it implies we lack the brains to research the medication, weigh out pro and con and make an informed decision ourselves.
The thing is I get why the OP feels the need to say these things as I need the same kind of support myself. I said this in another post as diplomatically as I could but perhaps a forum that has folks in the same boat he is in might be more helpful. I can't think anyone would want to be consistently alienated especially when they are in such ill health and spirits and genuinely need options, recourse and support.
I'm very sorry you've experienced such debilitating, lingering side effects, and have no doubt that interferon (and any of the drugs that we're taking) have the potential for long term side effects.
I do think it's good for people to be aware that choosing to treat is not something to be taken lightly. That being said, however, I have met quite a few people who have treated successfully, and are many years post-treatment. None of them have any lingering side effects.
My heart aches for the people that do suffer during and after treatment, but for many, if not most, the side effects are not as bad as ESLD.
No need to apologize. One thing is for sure I am very opinionated. I wrote a very long but much more heartfelt post to their original thread yesterday morning. And was glad and sad the thread was deleted. Everyone has their opinion and a right to voice it. And I totally respect others opinions whether I agree with them or not, but it has to be legitimate. Honestly I know the potential lasting effects of interferon and what about the long term effects of incivek (does anyone know?). Everyone with this or any other disease struggles to understand and decide on their treatment course. I did lots of research when I was diagnosed and it scared me to death, but I felt that it was the right thing for me. I knew there were new treatments being explored but the thought of living with my symptoms that were very quickly progressing until it is approved was not an option and neither was going through any trials. I wish you all the luck and truly think those in these trials are brave souls
So this forum is dominated by folks who think treating is good, who think that the cost-benefit of interferon is a good thing. Others think otherwise, and have earned the right to think so.
Some of these attacks are really small, shameful even. You say to psmike (and me) that you're sorry for his suffering, but you really have no idea about it and you call him bitter. A guy who suffers like you can't even imagine, he is driven away from here. I feel his pain. You folks don't. He probably IS bitter - you would be too were you in his shoes. He is probably doing the best he can to get over it and needs to vent.
As to me, please do not mistake my recitations of unpleasant facts as bitterness. That's your perception because you don't like the facts. I am not so stupid that I want to live my life bitter. Please.
On the other hand, I was shocked that my doctor did not know that something as common as joint pain could come from interferon. There are more doctors out there like him and they do not take sufficient care or give sufficient warning. Those contemplating treatment need to know that.
I was very much on the fence (I treated unsuccessfully in 19992 and had decided I never wanted to deal with that again) and my spouse (who is a doctor and who now admits that she did not know the likelihood or seriousness of potential side effects) kept pushing me to do it. So I did. With disastrous results. I wish somebody had told me that "Interferon whacks out and indiscriminately charges up your immune system." That idea is not communicated in the warnings. I now refuse to take biologics for psoriasis and arthritis because I now understand that they "whack out your immune system" the other way, by suppression. I have met people join me in that same approach - they won't take them. They think it's madness to do so.
Seriously, if you have decided to treat, then be comfortable with your choice. Come to the Hep C forum to get assistance and support while you take interferon. Please stay away from posts that talk about bad side effects. Turn away. Just don't look at them. Let those contemplating treatment look at them. At the very least even if they decide to treat, they will demand more form their doctors and take better care of themselves during treatment.
When you folks stifle talk about the truth of side effects, you skew the playing field away from reality.
Some of you who have been "cured" talk of lingering joint pain and fatigue, brain fog - another person might very reasonably decide that he or she does not want the risk of these things. That would be such person's right. Yet you all get offended by talk of such decision because you have chosen to treat.
You tell people they are going to die from hepatitis C if they don't treat even though the medical evidence seems overwhelmingly against that assertion. Quit saying that. Some will die form Hep C if they don't treat. Most won't. Some will get really whacked by interferon if they treat. Most won't.
There are many people - Hep C sufferers, former patients and very respected doctors - who believe that treatment with interferon is a bad odds play. And they may be right. Or they may be wrong. But that is what they believe in their heart of hearts, and their opinion deserves the same respect as yours.
You act like all knowing interferon gods, that treatment is the only way, mainly because you have chosen to treat. None of you are God and none of you know the answer to whether it is better to treat or not to treat. None of you. You've convinced yourself that it is, but none of you know.
I realize for many that treatment is a last option, that they face death. I am so sorry about that. I face death too. Yet not all are in your shoes. A young person who hears "six months of flu-like symptoms and the effects will all resolve" who has just been diagnosed may be a whole lot better off not treating right now.
If this forum is to be only for those who believe that treatment is the right option, then let's at least have a disclosure at the top of each page so those contemplating treatment know that those who want to communicate and warn others about bad experiences with interferon are not welcome and are not being heard.
psmike - the poor man. I am sitting here ... I know what that poor guy has gone / is going through. He is in the loneliest place in the world. You tell him to shut up and go away. "Nobody wants to hear you. You're not legitimate."
Everyone decides what to do with the set of circumstances in front of them.
Are you going to wallow in self pity or get up and go forward with your life ?
Hep C almost killed me.
But I didn't say,' poor me.
Self pity, only makes you feel bad.
More people in the US die from hep C than from AIDs.
More people in the US get liver transplants because of hep C than any other reason.
This is the facts.
Why don't you go on the cancer forum and call them pro-chemo or pro-radiation ? It really is no difference.
Everyone has the right to believe what they chose. That is not the issue.
I have a hard time understand someone coming on here with the sole intention of scaring people,
It's one thing to say, if you have no or minimal liver damage, consider if you really need to do treatment. Educate yourself before making this big decision.
It's another thing to try to scare people already dealing with anxiety, fear and the difficult side effects of tx, just because of your own pain.
I'm still skeptical that this may be an attempt to scare people away from SOC or Triple Tx, and into being research subjects~
After all...this IS teh internets. Trolls feed off of getting a strong reaction out of people, and what better group, then this one? People here are sincere, supportive, and vulnerable.
We have all heard the stories, about vulnerable teens, who have been bullied via the internet, and ended up committing suicide.
I'd hate to see someone on here, manipulated by a faceless troll, into stopping treatment, and maybe dying, because of it.
Just to prove psMike, or his "friend" rambleon40 are real, why dont they post some of their labs, with their name blanked out, so we can see that they actually DO have Hep C. And I will be happy to do the same.
I realize many people arent comfortable posting a photo of themselves, but I am always skeptical of an account, with no photos at all, that is completely new...it just reeks of a troll account
Too everyone that may be reading this thread and may be confused: many posts have been deleted so you are not seeing what was being used as these "scare tatics" ....these posts were deleted by the mod because they were seen for what they were.
It gets really hard to understand when the offending posts are pulled.
Personally, I wish they'd just delete the whole thread.
What good does it serve?
Boce- I could have been mistaken.
Just because the poster sounded like someone else, doesn't mean that they were indeed that person. ( who was out of here before you showed up)
I'm learning to re-think some decisions I made under the influence of tx.lol
"You act like all knowing interferon gods, that treatment is the only way, mainly because you have chosen to treat. None of you are God and none of you know the answer to whether it is better to treat or not to treat. None of you. You've convinced yourself that it is, but none of you know. "
you're right, none of us are god. but i can most definitely tell you that i know the answer to "treat or not" for ME. did you read the title of this forum? ya that's right it's "Hepatitis C Community". dude, do us all a favor, why don't you and psmike start your own forum for Interferon haters?
i promise we won't go to your forum and make the same ridiculous comments and threats (psmike's profile said it all) you both are making.
Yes, I have been wrong about Internet hunches also. It's not just the meds though, but also, being on The Internet can do it.
They might not be a schill, or a troll, they may just be a disgruntled person, who actually did have a bad experience, with Interferon, etc. The older treatments were longer, and of course, there is always the chance of permanent side-effects.
After making videos on YouTube for 5 years, I may be jaded~
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