It's been awhile since I've posted. I saw a very long thread on this subject so decided to start a new one since that one was too old. It will be 1 year in a couple of weeks since I finished treatment with SVR. I was one of those people who knew I had the virus for over 15 years but chose not to treat b/c I had minimal damage, no symptoms, etc. I finally chose to treat if you can believe this, b/c I was dumped on the spot by a guy I cared very much for when the pre-sex discussion came up. I decided at that point that I would treat and hopefully never have to tell anyone again and risk that rejection.
My experience with tx was absolutely horrible as many of you have experienced. I lost my beautiful long curly hair, my skin tone, my mind, etc. I couldn't wait for it all to be over so that I could be "normal" again.
This leads me to now - one year later . . . my beautiful long curly hair is a memory. I am left with a volume of pencil thin wispy nothings on my head. What has grown back is thin and then falls out again. The dermotologist says the meds probably triggered female pattern baldness. I am plagued with what the rheumatologist calls "fibromyalgia." I hurt all over. Some days I feel like I've been beaten up - badly. I have no sex drive and other related problems and my OB says the meds maybe triggered early menopause. Most days are just miserable. I feel ugly and tired depressed. I try to exercise but then I hurt for 3 days afterwards. All my bloodwork is normal and no one can explain why I feel this way except that no one seems to . . .
con't. . . know what the long term effects are of this tx. Am I still glad I treated? Honestly, no. If these long term "side" effects are forever than I can tell you my quality of life has diminished significantly. I'm not telling anyone they shouldn't treat, especiallly those who did not have the option. I'm just sorry I did.
Sorry to hear about all the problems your still having. I hope that with more and more time you will get better to some degree. I mean we did a wicked treatment for up to 48weeks or more depending. Thats almost a year of your body fighting this ****. It may be a slower recovery for your body to get back to normal. At least I hope that is the case for you. I have heard from a few that still had problems after a long time post treatment. Good luck with everything. Keep taking acre of yourself.
Chev say: he is having a very difficult time and is reticent in expressing himself because some that are, are being accused of evoking fear in tx'r.
Thanks for bringing this up, as I have been accused of this myself. The point in bringing up these things is not to evoke fear in those that are treating but to help those still in the decision process make a decision that takes into account all experiences and all points of view. Hopefully your friend will feel comfortable enough to speak out but I certainly understand someone not wanting to put themselves in the line of fire. It is encourgaging for me and others that you and some others have had lingering side effects that eventually cleared up resulting in more health than pre-tx. But as you say, this doesn't happen to everyone.
I was feeling so crummy today and finally got the courage to post here again even though after I wrote the post was afraid I would be attacked for my honesty. I noticed most of the responses were from folks who I know from this forum who were treating at the time too. I think we always supported each other in that we should not be judged for sharing our experiences. I know I couldn't have gotten through the tx without some of these people. I learned things the docs didn't want me to know or didn't know themselves. I learned what to do when my skin got rashy or my mouth dry, etc. I also learned that it is not our jobs to promote or pursuage people to tx or not to - just to be honest and in sharing our experience we do so. Once they made that personal decision being here to support them was what was important. It is exceptional what people can do for complete strangers when they have a common cause. Thank you so much for allowing me to share my experience.
It seems to me the number one reason people who are recently diagnosed fear treatment is the fear of side effects, during or after. I have not seen anyone post here in the year I have been visiting say to anyone that post treatment sides don't exist, nor have I seen anything but compassion offered to those who post about them so I don't understand how someone got the feeling they couldn't post about them. Clearly they do exist for some people. How often does that happen is the question. How often do existing illnesses or disorders get "set off" by the tx? How many of those who have these issues have them but they are not related to tx? How many are due to having Hep C for decades rather than from the tx? If people post treatment were flooding back to their doctors with these issues and it was a common occurance it would be one thing, but they aren't. That is probably why there isn't much data on it, because it is rare. They do seem like common issues if you only go by what you read on this site. They are mentioned to practically every new visitor as if they are a common occurance. Doctors cringe at internet groups for this reason, many docs believe tx problems during AND after are overblown in groups like this. I know some will be mad at me for saying that, but that is verbatum what my doctor said when I asked him about post tx problems, ad others have aid their doctors said similar things. He said you do not see these kind of "post tx permanent issues" on a large scale and in his practice he put the percentage at 1-5% and added that many of those issues "cropped up" but existed prior to treatment. He then asked "did you read that on the internet?"
This is not to say that even one person suffering with them should be left without follow up treatment or that they shouldn't study this issue more but the risks of HAVING HCV vs the risks of having these type of problems are not equal. It seems the majority who treat do NOT have that experience. If that fear is made to seem larger than it actually is then a new visitor might leave with the impression that the risk is larger than the reality and base their decision on fear rather than on more sound criteria. People with ongoing issues are looking for answers so more likely to be online seeking others in their position than people who do not have this problem.
Maybe if it was said to newly diagnosed people " in rare instances people have developed lasting problems" or something along those lines so unnecessary fear isn't created in people who are just finding out they have it.
What then accounts for a significant number of hepatologists suggesting a watch n' wait strategy for those with little or no liver damage? If serious side effects are so rare, why wouldn't treatment be recommended to everyone by every doctor?
Your doctor is of course entitled to his opinion, but it is not shared by all doctors -- in fact the medical community seems split on the risks and rewards of treating those with little or no liver damage.
Compared to other boards I've visited, MH is pro-treatment, so I don't share your view that people here are made unecessarily fearful. I see post negative post tx experiences posted here like cbee's. and I also see others post they don't have any lingering sides. And then those like Chevy who say they had sides for a year or so, and now they feel better than ever. Hopefully, the more people hear, the better they will be able to make their own decisions.
Funny, when I talked to my Dr before starting tx, the possibility of lasting and permanent sx's was one of the topics. Interferon is a STRONG chemical, and at the doses we are taking, it's bound to flare things up.
This forum is probably the most pro tx forum on the net, and at the same time, it also displays some of the most honest members around. Other forums, threads such as this would be zapped, disappear, etc. If you think that these things are not common, check out some other forums.. Hit up Delphi, etc.. Look for a lady named Tee. Granteehem to be specific.. She was a EMT paramedic, acquired HCV, treated, has cirrohisis, and is left with VERY real and lasting sx's from the interferon. There are many, many other members out there just the same. Yeah, not everyone get them.....But just as with the meds success, we're all playing the odds.
I was 26yrs old at the start of tx, now I'll be 29 in late July.. I feel as though I aged 10 yrs.. When I look in the mirror, I don't see the baby boy I was always called. I feel achey, joint pain, and my skin has aged as well. My mind is not as quick, and I have trouble putting together words and with basic comprehension. Articles and studies I use to be able to read and breakdown the first attempt, I now find myself rereading just to remember what was just stated. These meds are strong, and t5he sx's are real.. I for one am gonna listen to people out there experiencing and going through the same thing I am, not my Dr.. If you haven't noticed, Dr's are not always honest!!! Sometimes they fail to mention the little things, and this is done so very conveniently to cover there own.
One more point about our doctors: I think that hepatologists and lots of gastro docs who treat hepC aren't necesarily deceiving us. They're just really into LIVERS. They see what liver failure does to real people and they know it looks bad. So...they're focused on our livers--but not necessarily our brains and hearts, etc.
Unfortunately, it really is up to us to weigh all the costs and benefits when deciding on TX. For people with minimal to moderate damage, it's harder to do the calculation.
I find all information helpful. I can scan the NIH website and read articles in the Journal of Hepatology all day. That's no more or less helpful to me than hearing the experiences of real people (those with lasting side effects and those who feel better than ever) here. Of course, you guys tend to be a lot more fun than the J. of Hepatology.
I've been slammed before by stating that people should be more afraid of the the current meds than the hepC. I'm one month post tx and compared to tx I feel pretty good, but death would also probably feel better than tx.
I stick to my guns when I talk about deciding to use these meds, they should be used only as a last resort. When there is definite, not suspected; symptoms and advanced liver damage due to HCV. Some people also tend to blamed everything from a bad attitude to hemmoroids to zits on HCV.
For the majority of those with HCV I believe they should live healthy and treat when a better course of tx becomes available. I had advanced liver damage and was showing obvious symptoms of liver disease, so for me it was a last resort. I am clear now but I would never re-treat with these meds, nor would I have extended tx. For now it's too early to tell but I have every intention to clear this junk out of my body and mind; and get on with a healthy life. Peace
Well, you are right about the long-term effects of tx, most docs do not have a clear picture of exactly what they are and who they will leave feeling worse than the Hep did. But I think since the long terms effects of Hep are liver death and then people death, the medical community down plays the lasting effects.
I too feel like I aged 10 years from tx, took a year for my hair to come back and I am not even close to being as phsically strong as I was before. It has been two years since I quit, I non-responded and still have fatigue, dry skin etc. My attitude changed a lot this past two years, I think if you are trying to get back to where you were before tx, you will grow more disappointed as time goes on.
But there is nothing to say that you can't walk every day, great for the butt, get tx for the early menopause and cut your hair shorter while you do minoxidil. The point is, Hep C touched you, Interferon whammied you, and now you start over, just in a little different shape and size.
Pissed me off a lot at first, but now I am better, I learned to take a lot of pictures after tx, it is what makes me happy. Hiking used to make me happy, but I adapted. What really sucks for me is now I get to do tx all over again and you can bet that I will be one rereading my own posts for inspiration once I start. I will miss my hair and my puny muscles and my appetite, but if I clear this time, my life, however changed, will ROCK!!! I do not want to have Hep C. Tx sucks, but the alternative is unacceptable. Hope the day gets better for ya.
Sorry what happened and thanks for sharing your experience . I agree with you that the medical community tends to minimize post treatment side effects. Hopefully those with little or no liver damage will listen carefully when trying to make a decision. Someone in advocating treatment for all made a statement something like side effects are temporary but the virus is forever. I'm sure this rings hollow to those like yourself who are suffering. Yes, there can be worse things than having the virus and in some cases that is treating the virus. At 16 weeks post treatment, it's too early for me to make any personal judgements, but if some of my post treatment issues don't clear up, I will do what I never said I would and that is to second guess treating even as a stage 3.
Just had to comment on this one folks. I treated 48 weeks and relapsed. It took a full year for me to come back fully to pre-tx state. Most recovery was fairly quick-hair,eyes,skin and energy but mental state-depression lingered-decreased slowly and sleep was weird for about 5 months post also. Now-two years post I feel healthier then pre-tx eventhough I've still got hcv. I feel for those with lingering sides but not all will have them. I am a 1a and fortunately stage 1 and grade 1 damage so I am waiting for (possibly) vx-950 for my next go-round.
I also would comment that the current crop of people on the forum are brave and humorous-with or without svr you are winners in my book.
We all came here and continue to come here looking for the truth , good or bad. The worst thing that we could do to/for these new posters is not give them the truth and to allow them to set their course for an outcome that will be very difficult at best . We have to let them know , and remind ourselves , that the light at the end of the tunnel might be a train.
"Other than that , how did you like the play Mrs. Lincoln?"
One of the reasons there are no stats on post-tx lingering sx is the fact that alot of docs just write it off. Once you are off tx, you are on your own and they don't want to hear about your problems anymore. Some even try to say it's all in your head, so they don't even take it serious enough to even document it. Peace
very Good thread...i am worried about my recovery after trx...If the sx's from the meds linger and i age 10 years i will be pissed....thanks for the post & everyones comments.......Now let's hope we ALL achieve SVR and Good Health
In my book "rare" means "uncommon or not in the majority" ...not sure what your point is there.
You have acheived SVR so you no longer have the DRAGON to deal with, you beat it. To me, everything else pales in comparison.
Eastvillager's post above makes valid points.
eastvillager, welcome to the forum.
I love hearing good news from those who acheived SVR and am glad you are feeling great and able to work at a very stressful job. Can't wait until I can say the same.
Wow, what a nice little gathering of minds we have here. First off, Cbee I want to just give you a solo standing ovation from over here at my desk!!! Here, here!!
"Data" as you state, is EXACTLY what is being gathered. It is just the ignorance of some, that conitue to "selectively" gather it, that misleads people.
When I started tx, as I was too afraid not to. I was so scared that I was gonna die, that I rushed into it. As many know, I lasted 6 days before being ordered off. I then searched for ways around it..Ways to avoid the tx, ways to convince myself I didn't need it. Everyone basically told me that I had NO choice. That if I wanted to live, I had to tx.
Well, after educating myself and experiencing tx for 48 weeks, I disagree. Alot of us have options, and it is not fair to anyone to have to base decisions on limited resources. That is why I love the ability of forums like this where people are "hopefully", comfortable enough to share their personal experiences. It is this "data", in which is further educating us all, and setting the foundations for further studies and research.. This combo tx has only been around for a few years, so EVERYONE is still learning, INCLUDING the Dr's. It takes the courage and honesty of members such as yourself to come forward and express the "reality" of the possible sx's the drugs may cause, to make any progress. people have to be presented the facts. If I knew what I know right now, I might have waited.
That is why it is sooo imporatnt for discussions such as this one to take place. It is important, that newly diagnosed members KNOW as much as possible, so they can make an "educated" choice. A choice based on ALL the facts and possibilities, So that they know EXACTLY what they are getting into, and what they MIGHT expect.
I thank everyone for their honesty, as it gives hope and confidence to those infected that they are not alone. That what they are experiencing, is not in fact "rare", or "uncommon", but in fact the reality for MOST.. Hey, may we all be the ones to relay the data, to set the ground work for further research and study. If you think information on these forums is not overlooked by the Dr's and the Pharms, you are greatly mistaken.
Rev: A stage 3, if they have no liver restoration as shown by a biopsy, has to have ultrasounds, CT scans, and the like every six months for the rest of their lives to be on the lookout for liver cancer (HCC).
I was told exactly the same thing by my doc. A scan every six months (alternate between CT and ultrasound) and an alpha-fetoprotein (AFP) every six months as well.
I just did my AFP, but about a year late on my CT scan :)
Speaking for one who is deciding on treatment, what kind of treatment, etc...I for one am glad that there are those who honestly recount their experiences, bad or good or indifferent, here and at other boards...as a low damage hep c patient, I feel I need to learn all I can for a truly informed decision, don't look now but I probably have a lot riding on any ultimate decision I make...
I do realize that not all patients are like me, I have a friend Henley, who tells me I'm nutz! to go on boards like this, if you have to take the meds, might as well know as little as possible about all possible outcomes, etc....so you won't scare yourself to death, especially if youre the obsessive type of person that he feels we both are (guilty as charged, though I do try to work on it! ha ha)
I for one feel that it is probably impossible to quantify a lot of issues regarding this disease, the meds haven't been around a long time for a lot of data to be recorded on them, and I don't talk to a lot of patients who say that the drug companies or even their doctors followed up on their tx and post tx expereinces, the most Ive seen are a few studies on the subject, if there's "a lot" more statistical data out there, I maybe would of seen it by now, perhaps not...
I've said this before, but I've also attended a lot of hep c support groups, and a lot of the patients I met there never venture out on hep c sites....and the ones who treated sounded a lot like the average of what you encounter on these boards...some had better experiences then others on treatment, some had long lasting post sides that were troublesome...some felt a whole lot better a month out of treatment and regained their prior lives relatively soon after, etc, etc...what's really weird, and I think Jim brought this up, it seemed like half of the geno 1's SVRed at these groups, just like it seems on these boards...
Since there's not a whole lot of data on many of these issues, I just maintain that it's all over the place, but whatever happens to you is whatever happens to you, to try to draw conclusions based on the existing data is a very difficult thing, I wish this were different...
I think Algernon brings up a good point, not every doc is going to be heartily enthusiastic about these drugs for a geno 1, how could they be with a 50% svr rate? It's all relative, compared to 10 years ago they are great...so if they have to prescibe a potentially very hard treatment lasting a relatively long time, which is effective 50% of the time, are they gonna say, "Hey, this stuff is going to kick your A$$!!!"
Of course they are going to try to put the most positive spin on it possible, cause it is the only game in town and that's all they have to offer us...of course they are hoping you do have the best experience possible under the circumstances...I would find it a little suspect that a doctor would quantify the percentages of long lasting sides as 1 - 5%...but maybe that is his/her particular experience in his/her particular practice...
And like Algernon says, a hepatologist sees people in ESLD all the time, sometimes I shudder in the lobby of my hepatologist, I've seen so many patients so badly off, it's really heart wrenching, if this is a doctor's experience, he/she is probably very likely to say "treat" in the hopes of averting this for any of his/her patients...who could blame them? Compared to these people some patient who is a grade 3 is doing darn good...
And to put things in perspective, many of us have known people who didn't treat, and were far the worse for it, at least I do...
So I'm glad for the people who are gung-ho pro treatment, cause they provide good insights and bring up some very valid issues, they help people who are treating stay on course and stick with it, and feel better for it, this is a pretty pro-treatment board, yet many keep an open mind for everybody and it's great to see people help each other out so such a trying ordeal....
And I'm glad for the people who are more cautious about treatment for low damage patients, cause they bring up some really valid points as well and point out the fact that these are very stong drugs so don't just jump in willy nilly, really research, etc., before you jump in, if you decide to treat with these drugs at all....all these people help us decide what is right for us individually...along with our doctors...
TX is a process. Being diagnosed, deciding whether and when to TX, then possibly THE TX, then post TX experiences (SVR or not).
This board is extremely helpful to folks deciding to TX and who are on TX. It's great that people feel free to post about every weird and scary and miserable detail of ther SXs while on TX--and the rest of us can help with support and advice based on our experience.
Post TX is part of the TX process. By this point, most of us feel like we're part of the Forum family--this may be the only source of support for many. We should all feel free to talk about what's happening to us post TX--whether it's good or bad. Sometimes post TX folks need support and advice. And sometimes they give us hope. They all help us on our journey.
I think you have to be careful describing people as
"fearmongers" because they are relating their post treatment experiences and/or expressing their heartfelt thoughts on treatment decisions based on both their own experiences and those of others.
How can you call these people fear mongers and at the same time state emphatically that lingering post-tx side effects are "rare"?
Isn't this a reverse (and just as bad) form of fear mongering in a sense? In other words, misleading people by stating things as fact that aren't born by any facts? On what basis do can you so emphatically make that claim that lingering post tx sides are rare?
If it's so rare, then I guess all of us posting about our post treatment side effects are hypochondriacs?
I know its important to beable to talk about all the sx pre-tx, during, or after,......
Personally, I feel frightened by the prospect of post tx sx.
It was not something that was ever discussed, and like the typical ASS U ME I assumed, stop tx, sx stop too. Very naive of me I realize.
As I looked into the mirror this morning I thought about all I had read, I would be lying if I didnt say I am scared. Fear can be healthy though,........
What keeps me going is "the light at the end of the tunnel"
But isnt that what keep all these others going? It seems like a cruel joke,....what they are going through.
Yes,.....talk about it, my gosh, talk about it!!!
I will deal with my own fear,.........sometimes fear can be healthy.
True lilmoma , fear can keep us in line. If I had a little more fear 30 yrs ago I might not be in this pickle. (did I say pickle)
As for the post tx sx , I would have to guess the vast majority of us HCV never considered there would be in lingering problems from the treatment. It never crossed my mind untill my tx was underway , not that it would have made any difference. I guess I thought as long as I'm being scared during tx , a little more fear cant hurt me. WRONG. My fear has never been of tx , but what happens when its over. Am I going to get my body and mind back in one piece? Probably . But we are all different.
( I beginning to hate that phrase)
All the colors of the rainbow flag in this thread, I like the variety of experiences and answers here. This is a place to talk of our experiences with Hep C or that's what Google told me. I'm not very good at "packaging" my responses, just to keep a specific "tone" of chat going on, especially when it comes to having Hep C, experienced various degrees of side effects and then failing to respond.
Please don't tell me I can't be my "wordy" self while I am here, like parents, I understand wanting to protect newbies, but we cannot. And how dangerous is it when we take it on ourselves to educate them with our opinions, rather than our personal experiences. And if my experiences with tx were less than perfect, I need to be able to express that also.
You all rock, like I've said before, all the true faces of the dragon. Hope your holiday is dandy.
Tele: My fear has never been of tx , but what happens when its over.
For some reason my focus was always on treatment and not the thereafter. Possibly due to my diagnosis (stage 3) and possibly to some stupidity.
As bad as treatment got, I could always tell myself that I was winning over the virus and eventually this would be all over. Now that it's over, while I'm having a better time physically (as Cougares suggested who doesn't feel better compared to while treating) mentally it's another story because my concern is I may be end up with a worse QOL after treatment than before.
Someone earlier spoke some wise words about not using pre-tx as a benchmark, but that hasn't sunk in yet. I still keep saying to myself that as a stage 3, I didn't have a choice, but I don't say it with the conviction I used to. Revenire is right that we owe it to newer members to share all our experiences, the good, bad and ugly because the truth may hurt but being mislead can hurt more in the long run.
I also should add that I think I'm losing my objectivity in all this due to post treatment side effects I'm now experiencing that are affecting me both physically and mentally. I do feel angry but I'm not sure at what. I sure learned a lot about how to fight the virus but maybe I should have put the same effort into learning the potential dangers of treatment before I treated. If I sound conflicted, confused and angry, I am.
I hear ya Jim.
When my tx started , I was full of **** and vinager , (which really doesn't make a very good salad dressing) and I was prepaired for anything , Anything. As tx progressed , my point of reference started to shift and I began to see myself as an old person that always kind of stumbles when they stand , has to stop and rest on the way to the car , people use "that voice" when speaking to me . I think part of that is that its been so long since I felt good , I cant seem to get my pre tx point of reference back. When I say "I feel pretty good" now , its relating to the existing state of affairs and not when I used to feel pretty good.
Their are enough post tx people that visit here that have sucess in returning to , or close to , pre tx vitality that it keeps me going.
Jim , have you spoken with anyone that just absolutely didn't thrive after tx?
I agree, people should be honest and share their experiences here regardless of what the experiences are and I have never said anything to the contrary. I spend a lot of time offering support to people here in every way I can. I do have a right to my opinion just like everyone else, but apparently there are some who think I don't or twist what I say into trying to make it appear I am unsupportive to those with ongoing issues which I am not. I worry that newly diagnosed people will get the wrong impression and believe this is a common problem. Fear is at it's height when newly diagnosed. There is little to no evidence these ongoing issues happen for the MAJORITY who treat. Yes, for some that is the case but from all I can find on the subject those situations are not the norm. Anyone who has any evidence to the contrary, I'd like to see it. I was warned that it could take a YEAR to be back to normal after treatment and recover from the "interferon hangover." Obviously for some it takes even longer tha that.
I thought the goal of the treatment was to acheive SVR. From my point of view if I acheive SVR but end up with headaches or neuropathy and rashes or hair loss or whatever else happens to some from treatment, if I manage to BEAT THE DRAGON those issues are secondary in my view. I have NOT beat it, I am here for support and on my second round of tx, I do not deserve to be bashed for my opinion.
Jm said if he would have known he'd have these issues maybe he would have chosen to keep his HCV and stage 3 damage. He has a right to his opinion but he has achieved SVR. Me? I'd take the post tx sides over having Hep C and the possibility of my liver failing or mylife being shortened by HCV any day if I manage to achieve SVR. Even if I don't clear it, the benefits of the tx are obvious to me already as many of my pre tx issues have gone away, my enzymes have normalized, my bodily functions are normal. Sure I feel like death warmed over on these meds and can barely function most days, which is why I am in bed with my laptop in the first place typing in this forum instead of out living large.
I was not one of the ones who went into this not knowing there were possible problems long term, those were made clear to me by the doctors and the literature with the meds. It covers a vast array of possible problems but they were risks I was willing to take because the risk of HCV in my life has PROVEN scientific data that it could shorten my life and cause other illnesses to develop. I was willing to accept them as consequences of trying to rid myself of this disease and in my mind HCV is a MUCH BIGGER risk than the risk of problems from the tx itself during or after treatment.
My opinion is no more or less valid than anyone else's.
I'm 3 weeks shy of 6 months, post treatment. I thought after I was cured it would be a quick road to recovery. It wasn't. I was still feling sick for months after finishing treatment. I thought I was permantly disabled from the disease and the drugs. I must say that isn't the case. I feel great today! I'm sorry for the people who are suffering after treament is over. I suffered with Hep C for 30 years till I was diagnosed. I was glad to finally find out I was sick after so many years of complaining to my friends and doctors. It takes a long time for the drugs to wear off and get your strength back. I'm sure many people are sick after treatment, but people do get sick from other things and as we know physiologically it is a difficult disease to deal with and bounce back from. My treatment was rough and I got very sick. Almost every side effect imaginable. I felt like a zombie for 8 months.But now I feel better then I can ever remember. My weight is back. My strength has returned. The dozens of side effects from the disease and treatment are all gone. I even went back to work today in a very tough job as a newspaper photographer. I think there are a lot of people cured by the treatment we never hear about. I think we tend to hear more from people with problems on the web about everything since it gives us a forum to tell the world. But I really do think it distorts the real facts that many people (I personally know many) that have beat the disease and are leading healthly lives. Again I am sorry for the people still suffering.
Of course you're entitled to your opinion but isn't that what you are denying others when you accuse them of fearmongering? You've already apparently changed your view of post tx sides from "rare" to "uncommon" to "not in a majority". C'mon.
All some of us are saying is that post treatment side effects are a real possibility and that no one knows in advance if they will fall into that group. That doesn't mean someone with little or no liver damage shouldn't treat -- that's their decision -- but it does seem reasonable that they should be made aware of those issues before they treat, and I'm getting the feeling from this thread as folks come out of the woodwork that many more have been holding back their opinions/feelings/experiences because of the pro-tx nature of this discussion group.
Finally, I'd like to say I've always admired your character, spunk, and courage for standing up not only for what you believe, but for standing up for others. This discussion group needs more like you. This is just one issue where we don't see eye to eye.
Yeah. LOL. And especially as gung-ho male types which I get the sense maybe both of us are.
Actually I was under the impression I was stage 3.5 as my biopsy report read stage 3/4 which in actuality means stage 3 out of 4, but which my first doctor led me to believe was between the two stages.
Then I delayed treatment a couple of years for a number of reasons and finally when I was chomping at the bits to get going I had to wait another six months for business reasons. By then, those stage numbers were really closing in on my mind, so it was as you say BATMAN, STAGE 3 BRING ON THE PEG AND LET'S GET GOING!!! And so I did, double pegging, double ribbing, double fat on the meals, the whole nine yards including double side effects :)
Right now I'm going though some post tx problems and as I've said earlier I think I'm losing all objectivity in this as I'm starting to feel angry but not sure at what. But hopefully, since I'm only 15 weeks post treatment, things will get better. Still, it's quite obvious they don't get better for some. Well, what's done is done, just got to look forward which is easier said than done.
If I remember correctly -- don't always now -- you've relapsed so your situation is even more complicated. I wish you the strength and courage to make the right decisions and get through this best as you can.
Kalio: In my book "rare" means "uncommon or not in the majority" ...not sure what your point is there.
To me -- and I think to most -- it means a lot less. Using "rare diseases" as a guide -- The U.S. Rare Disease Act defines "rare" at .07%. The European Commission on Public Health defines it at .05%
Source here: http://www.rare-cancer.org/rare-diseases.html
Kalio: ou have acheived SVR so you no longer have the DRAGON to deal with, you beat it. To me, everything else pales in comparison.
I guess this is a major point of disagreement. Many of us feel that "everything else" can be worse than the potential side effects of treatment, especially in those with little or no liver damage. As far as myself -- a stage 3 -- I think you'd have to walk in my shoes before making that statement for me.
I hope you don't interpret me as bashing you, I just pointed out where I might *disagree* with some of your analyses, and your doctors....but that's okay, we've disagreed before, and I'm sure we'll disagree again, but we also agree on a more issues then not...
Sometimes I think many altercations could be avoided if some of us argue all our points, see that it's not going to change people's minds, and then just agree to disagree...my opinion...
I am an debator, ha ha! Can I get an amen out there! And I like seeing lively debates, I learn a lot from them, and I for one think that there are many knowledgable people here, many, that's why I like this forum...and everyone is entitiled to their opinion, even if you don't agree with me, ha ha!
I have changed some of my original concepts because of the debating here and elsewhere...Here's to all of you knowledable people out there, wherever you get your knowledge, through experience, through thorough researching, etc...wherever, I salute you all! and happy July 4th! (speaking of saluting, ha ha)
I worry that newly diagnosed people will get the wrong impression and believe this is a common problem. Fear is at it's height when newly diagnosed. There is little to no evidence these ongoing issues happen for the MAJORITY who treat.
Not to be repetitious but newly diagnosed people have the right to know the possibilities good and bad. They have the right to be fully informed before making such a serious decision. I hope my experience will make a newly diagnosed person with no symptoms, no liver damage, etc. think about postponing this tx until they need to tx and hopefully something less toxic will come along. I waited 14 years and although I achieved SVR I wish I waited longer! I was fortunate to have had a choice, I know a lot of folks don't.
When I asked my doctors about long term problems they told me "you'll be fine" and they didn't know of any significant long term effects. During tx they told me to call my general physician for the sides and didn't take the time to really hear me (could that be why there is no data?). When my tx was over they sent me on my way, and didn't care to really hear my complaints about my post tx symptoms (more missing data?). Even one year later I made a call to Cedars and was told how sorry they were but I can't bet you that was not recorded for data. Oh and by the way, this dr told me that the "data" showed that I would probably not clear with Pegasys . . . I forgot to mention that other company flies him around the world on their dime. When I chose to tx with Pegasys I was basiscally told I was self-treating.
You are very much entitled to your opinion but whether or not it is your opinion that you believe the "majority" of people aren't having long term problems, people deserve to know that they exist. People deserve to have all the facts and it's not an opinion - it is a "fact" that people are having these experiences. For me, I am the "data" and people I know who are continuing to suffer are the "data" and as I said before, the "data" I gathered here was not revealed to me by the doctors but rather the generous people who take time out of their day (a lot of times really feeling crappy) to reveal their challenges and successes with this tx and and that speaks volumes of "data" to me.
Yes, my doctors didn't like Internet "groups" either. I realized why when I had skin rashes, hair loss, vision issues, dry mouth, aches and pains, anxiety, sleeplesness, etc. and he said that all those things were "rare." None of those things were rare and the things I tried to alleviate the symptoms came from these folks here in this forum - not from the docs! In fact the doctors were not happy b/c I was asking questions about things they didn't have answers for and blaming the Internet! I live in Los Angeles, treated at Cedars Sinai and the liver clinic at UCLA, and sought advise from another specialist who only treats Hep C. These are supposed to be some of the best specialists yet not one of them told me about the long term problems I now have post tx. I am very happy to have this forum. Like I stated in my earlier post, it is important to be honest about our experiences. My doctors (to the best of my knowledge) never treated for Hep C. I'm very happy to have the opportunity hear from those who did.
I had hep c for 15 or so yrs with minamal effects. Was told treatment would help but not told that a geno type1 had an almost mill chance of success. Did two rounds of Pegasus an ribiviran. 18 mos. now left with the virus and the post tax side effects, mental and physical. Around 2 yrs. post now. Just lost my family my wife could not understand my need to take tramadol for my pain. Called me a dope fiend, but I find the meds help with the mental an physical trauma. Prayer and a great church family are how overcome. I got tired of just coping.
I also had hcv for 18 years with no liver damage and minimal symptoms,genotype 3a treated with pegasys/riba for 24 weeks in 2006/2007 still suffering with post interferon syndrome,pain fatigue confusion insomnia etc. Would have waited if I'd been better informed.
wow tis a long old great thread..
me hiv and hcv 1a
waited to do treatment that had a better chance of clearing the virus.
now with 12 weeks and a 90% success rate i must do it.
grade 2 i think but my kidneys have problems. biopsy on kidney next week to see exactly what it is..if it is hcv or the hiv meds!
i got both in the mid 1980's young dumb and stupid.
so time to treat if the sovaldi is doing what i hear it is.
do you suppose 12 weeks of interferon would lessen sx?
i already have extreme muscle bone pain fatigue overwhelming..
been really ill for 2 years. hiv under control...figure it is time.
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