Aa
post tx sides for the long term
Hi All,
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 . . .
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 . . .
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.
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.
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.
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 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 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.
Kalio said:
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.
-cbee
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.
-cbee
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)
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)
Here is the definition of the word according to the dictionary, "uncommon" is the first defiition:
rare (r
rare (r
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 :)
-- Jim
------------------------------------------
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 :)
-- Jim
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.
-- Jim
-------------------------------
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.
-- Jim
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.
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.
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.
-- Jim
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.
-- Jim
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.
-- Jim
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.
-- Jim
Hello,
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.
Steven
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.
Steven
I agree with you ,and your opinions are always held in high regard by most. Happy 4th.
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.
"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.
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
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.
-cbee
-cbee
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...
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.
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?
-- Jim
"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?
-- Jim
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.
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)
Take care.
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)
Take care.
Thats true , and it could be that post tx we are so beat down by the tx for the past year that we dont even pursue how to rid ourselves of the sx. We just hope they go away with time.
Here Here.
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?"
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?"
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
