Aa
Post - Tx Long Term Problems
It was requested that I re-post this. Are there others with this experience out there? ALL my doctors cannot seem to give me any answers!
micro2
06/26/2006
C23 . Hello All, I have not checked in here for months and this is just the topic I am intersted in. I am 2years post tx wchronic fatugue syndrome,fibromyalgia, neuropathy, extreme depression and mental fog. I am unable to work and collecting ssdi. I am still looking for that truck that hit me!!I treated for 19 months and did not kill the virus. I spend my time trying to make sense out of the person this tx left behind. Thanks, michael
micro2
06/26/2006
C23 . Hello All, I have not checked in here for months and this is just the topic I am intersted in. I am 2years post tx wchronic fatugue syndrome,fibromyalgia, neuropathy, extreme depression and mental fog. I am unable to work and collecting ssdi. I am still looking for that truck that hit me!!I treated for 19 months and did not kill the virus. I spend my time trying to make sense out of the person this tx left behind. Thanks, michael
overtime, the board changes its mood and the ones that can't relate to the present mood, will stay away and become reluctant to post their concerns. When the board did not foster post tx issues to be discussed, people felt alienated and retreated to lurking instead, then when it becomes saturated with conversations of post tx problems, those who can't relate are faced with the same feelings of alienation, and some might stay away for good, and others will lurk until the mood changes again.
from time to time, some of those who can't relate to lingering post tx issues will visit and remind the board that we all don't face ongoing conditions due to tx, that there is light at the end of tx for many if not most. I remember one woman who came back to let us know how well she was doing post tx, and how much stronger she was than the guys in her unit(she was in construction and in her 50's), her post left me in awe, and I wanted to be like her post tx! I wish I would have saved her post, but I did save this one:
"deb3
(06-Jun-04) . Hi
Its been a long time since I've been here- I finished a years treatment- peg-intron and riba- in Dec 2002, 1b and still clear!
I had every side effect listed--except the good one-weight loss! I was in my 2nd, 3rd and 4th semester of lawschool then-I know this now because I'm still there, hardly any memory of it though. The side effects were brutal, my thick waist legnth hair nearly all fell out or broke off, I cried through my classes, wept with fatigue and depression, had numerous experiences where I'd realize I had know idea where I was or how I got there--more crying then. And I don't even want to think about the excruitating headaches.
But NOW, my hair is back, thicker and shinier than ever, my skin is great, and I have strength and energy I haven't had for at least 15 yrs (I'm 52.) For so many years I had terrible joint pains, depression, unexplained fevers and fatigue and constant headaches. (I guess the docs have begun to realize that HepC DOES have symptoms or related problems before advanced liver disease sets in--the immune system is so overtaxed by dealing with the dragon)My memory is back and better than ever.
It is so worth it to have put up with the tx!!! Don't give up--fight to get procrit if you have to, go with the mood 'swings' and beg forgiveness later. Just do whatever to get through it--anti-depressants, painkillers, ritalin, sleeping pills, muscle relaxers. Don't let your dr, like mine, tell you that you just have to 'put up with the sides or quit the tx'--make them help you or find someone who will.
Stay with the forum for support
Debra "
and this one
I was a 1B, did 48 wks tx, starting VL was 596,000; VL at 12 wks was 370 and undetectable at 24 wks. Still clear at 1 year post.
My doc had explained that 1's start with a 50% chance of SVR; if a 2-log drop or more at 12 wks, then chances increased to 60%. Undetectable at 24 wks, chances increased to 70%. Still undetectable at end of tx, chances increase to 80%. And darn near 100% if clear 6-month post. My doc only does the end of tx PCR and 6-month PCR (many dr's do a 3-month post PCR) so I talked her into waiting til 1-month post rather than testing right at end of tx just to give me a better feeling that I would stay clear. I'm not sure where she got the figures from but I liked the idea of increasing my chances as my tx progressed.
Good luck to you and may you have a Happy Thanksgiving.
Lynne"
what if the collection of post tx data actually confirmed that the percentage of issues was actually low rather than more as we are implying? it could go both ways.
Most of the post tx issues are mentioned in the insert literature as possible side effects of tx, it might not say that they might linger post tx, but I think we can safely infer that it could happen, and weigh in that information while deciding on tx. It is not like the medical community does not think it can't possibly happen. If it can happen while on tx, it can remain after tx for some. What are we trying to find out, the percentage of actual cases? would that make a big difference? Those that want to treat will do so whether the effects happen to 10% or 80%, even if their liver damage is mild. They will go for the meds regardless. I read the inserts many times, the list of possibles scare the heck out of me, but people like the posters above alerted me to the fact that it doesn't always happen. Bless them for also dropping by, to add another view to the tx picture.
from time to time, some of those who can't relate to lingering post tx issues will visit and remind the board that we all don't face ongoing conditions due to tx, that there is light at the end of tx for many if not most. I remember one woman who came back to let us know how well she was doing post tx, and how much stronger she was than the guys in her unit(she was in construction and in her 50's), her post left me in awe, and I wanted to be like her post tx! I wish I would have saved her post, but I did save this one:
"deb3
(06-Jun-04) . Hi
Its been a long time since I've been here- I finished a years treatment- peg-intron and riba- in Dec 2002, 1b and still clear!
I had every side effect listed--except the good one-weight loss! I was in my 2nd, 3rd and 4th semester of lawschool then-I know this now because I'm still there, hardly any memory of it though. The side effects were brutal, my thick waist legnth hair nearly all fell out or broke off, I cried through my classes, wept with fatigue and depression, had numerous experiences where I'd realize I had know idea where I was or how I got there--more crying then. And I don't even want to think about the excruitating headaches.
But NOW, my hair is back, thicker and shinier than ever, my skin is great, and I have strength and energy I haven't had for at least 15 yrs (I'm 52.) For so many years I had terrible joint pains, depression, unexplained fevers and fatigue and constant headaches. (I guess the docs have begun to realize that HepC DOES have symptoms or related problems before advanced liver disease sets in--the immune system is so overtaxed by dealing with the dragon)My memory is back and better than ever.
It is so worth it to have put up with the tx!!! Don't give up--fight to get procrit if you have to, go with the mood 'swings' and beg forgiveness later. Just do whatever to get through it--anti-depressants, painkillers, ritalin, sleeping pills, muscle relaxers. Don't let your dr, like mine, tell you that you just have to 'put up with the sides or quit the tx'--make them help you or find someone who will.
Stay with the forum for support
Debra "
and this one
I was a 1B, did 48 wks tx, starting VL was 596,000; VL at 12 wks was 370 and undetectable at 24 wks. Still clear at 1 year post.
My doc had explained that 1's start with a 50% chance of SVR; if a 2-log drop or more at 12 wks, then chances increased to 60%. Undetectable at 24 wks, chances increased to 70%. Still undetectable at end of tx, chances increase to 80%. And darn near 100% if clear 6-month post. My doc only does the end of tx PCR and 6-month PCR (many dr's do a 3-month post PCR) so I talked her into waiting til 1-month post rather than testing right at end of tx just to give me a better feeling that I would stay clear. I'm not sure where she got the figures from but I liked the idea of increasing my chances as my tx progressed.
Good luck to you and may you have a Happy Thanksgiving.
Lynne"
what if the collection of post tx data actually confirmed that the percentage of issues was actually low rather than more as we are implying? it could go both ways.
Most of the post tx issues are mentioned in the insert literature as possible side effects of tx, it might not say that they might linger post tx, but I think we can safely infer that it could happen, and weigh in that information while deciding on tx. It is not like the medical community does not think it can't possibly happen. If it can happen while on tx, it can remain after tx for some. What are we trying to find out, the percentage of actual cases? would that make a big difference? Those that want to treat will do so whether the effects happen to 10% or 80%, even if their liver damage is mild. They will go for the meds regardless. I read the inserts many times, the list of possibles scare the heck out of me, but people like the posters above alerted me to the fact that it doesn't always happen. Bless them for also dropping by, to add another view to the tx picture.
hey, don't know nothin about no priapic whatever, ha ha! Or at least I used to! Hey, always enjoy reading you, you have a kind of Jack Kerouac style as you go through treatment, well, at least to me! hope you feel better soon, be well!!!!
Let's have a moment of silence, please. Other people's litigious behavior, whether actual or potential, is of no interest to me, nor is it my responsibility. The last thing I want to do here is offer up my painful past history as fodder for further argument. Support forum, anyone?
"But Cuteus has asked for clarification about why we would even bother to relay our subjective impressions about the after-effects of treatment, so here go some thoughts"
that is not what I typed or inferred. I was wondering what difference would it make whether it is a small or a large percentage suffering a particular issue, if someone wants to treat regardless, but I am glad you posted your why, because I was wondering that also, reasons why folks post these issues, because there seem to be several, from wanting sympathy to urge the medical community to rush more effective, gentler treatments.
But once we have accomplished this, the drug companies and drs are informing the world that there is long term severe effects happening to a large sect of the population(this is hypothetical) and neuropathy can be rampant(again hypothesis) what then? are we looking for them to just inform all their patients so that they can be well informed when making a tx decission, are we wanting them to warn of severe conditions and spur research on tx for these conditions, or a cure(even though things like neuropathy don't seem to have a cure regardless of the cause)? If I am a Dr and give my pt the product information, and tell them that some might experience these post tx, what else do we want them to do? What might happen is the same thing as with Vioxx, lawyers will jump at the sight of lawsuits for tx induced conditions, drug companies pay millions in settlement, pull the drug off the market because it is not worth more lawsuits and hep c infected will have a harder time at choosing tx, unless they are at ESLD. Why couldn't the manufacturer of Vioxx just add the possibility of cardiac events to their inserts and allow for consumers to decide whether they would risk it? because they did not want to create new sources of litigation in newly affected patients. Does anyone not see this happening to hep c drugs, should the manufacturer ever step up and say "our drugs are causing your myalgia or neuropathy'? Why isn't it enough that they acknowledge it in the inserts?
Does anyone really think that lawsuits will not sprout left and right, thus jeopardizing the freedom to chose hep c tx? I can see this easily happening in this country.
that is not what I typed or inferred. I was wondering what difference would it make whether it is a small or a large percentage suffering a particular issue, if someone wants to treat regardless, but I am glad you posted your why, because I was wondering that also, reasons why folks post these issues, because there seem to be several, from wanting sympathy to urge the medical community to rush more effective, gentler treatments.
But once we have accomplished this, the drug companies and drs are informing the world that there is long term severe effects happening to a large sect of the population(this is hypothetical) and neuropathy can be rampant(again hypothesis) what then? are we looking for them to just inform all their patients so that they can be well informed when making a tx decission, are we wanting them to warn of severe conditions and spur research on tx for these conditions, or a cure(even though things like neuropathy don't seem to have a cure regardless of the cause)? If I am a Dr and give my pt the product information, and tell them that some might experience these post tx, what else do we want them to do? What might happen is the same thing as with Vioxx, lawyers will jump at the sight of lawsuits for tx induced conditions, drug companies pay millions in settlement, pull the drug off the market because it is not worth more lawsuits and hep c infected will have a harder time at choosing tx, unless they are at ESLD. Why couldn't the manufacturer of Vioxx just add the possibility of cardiac events to their inserts and allow for consumers to decide whether they would risk it? because they did not want to create new sources of litigation in newly affected patients. Does anyone not see this happening to hep c drugs, should the manufacturer ever step up and say "our drugs are causing your myalgia or neuropathy'? Why isn't it enough that they acknowledge it in the inserts?
Does anyone really think that lawsuits will not sprout left and right, thus jeopardizing the freedom to chose hep c tx? I can see this easily happening in this country.
I am a boogerman and the devil's own advocate!!~good thots from All;i want to know about everyones 'condition' durin & afterTRX...cuteus helpesd me feel good about my present need for pain meds-i don't believe i could have managed longterm trx w/out 'helper meds"...my body is doin some strange things in this my 35 week of Peg/Riba-i greatly appreciate findin confirmation...simpatico helps..we are isolated or feel such,w/ this virus-sharing 'war' storys and comparing 'battle' scars really helps Me to deal w/ trx issues...That said,everyone's med decisions,health issues and reactions are personal-just glad that they aren't private..........My joint pain seemed to subside 1st month of trx-Now it's back w/ a vengance..!!! but hey,i am killing virus.......
Now,Califia-i gotta good inkling what priapism is& what part of my anatomy would be affected,but please post me All the bads news,or a link if yu must..THANKS
Now,Califia-i gotta good inkling what priapism is& what part of my anatomy would be affected,but please post me All the bads news,or a link if yu must..THANKS
I think that all we really need to do on the forum is to honestly relate our experiences of being on tx and life after tx. We all have somewhat different stories to tell and outcomes unfolding. But, I really do NOT like anyone telling me, or anyone else, that they should not tell the truth because it might 'frighten' someone, or make a 'newbie' too nervous to do treatment.
We all try to give an honest, and objective account of our experience, and point of view. I think THAT is plenty sufficient. The FACT IS that many people do seem do experience problems after tx that they did NOT have before tx. That is not so 'frightening', or surprising to most people who have read anything at all about interferon, how it works, and what it can do. I really dislike being contradicted when it comes to relating my own personal experience, and describing what my post-tx problems involve. It would be the same as me saying that those who do not suffer post-tx problems must be imagining things, or are not bright enough to understand that they do have problems. But I do not think that we are trying to say that. I do believe that many people do the tx and do not experience lasting after-effects. I have no problem with that information. What I do NOT want to hear is that I must be mistaken about my own personal experience, or that I should 'keep quiet' because I might be the 'boogie man'.
We all need to just 'tell it like it is' for each of us. The good, the bad, and the ugly. How else will we find out the real truth about HCV, tx, and everything else related. No muzzles please!
Thanks for respecting all of our points of view. And, by the way, we will ALL help the 'newbies' make their way through tx.
That is why many of us stay on the forum after clearing!
I fully agree with many who have posted on this thread, and just as strongly disagree with some others. That is how 'opinion' works.
DoubleDose
We all try to give an honest, and objective account of our experience, and point of view. I think THAT is plenty sufficient. The FACT IS that many people do seem do experience problems after tx that they did NOT have before tx. That is not so 'frightening', or surprising to most people who have read anything at all about interferon, how it works, and what it can do. I really dislike being contradicted when it comes to relating my own personal experience, and describing what my post-tx problems involve. It would be the same as me saying that those who do not suffer post-tx problems must be imagining things, or are not bright enough to understand that they do have problems. But I do not think that we are trying to say that. I do believe that many people do the tx and do not experience lasting after-effects. I have no problem with that information. What I do NOT want to hear is that I must be mistaken about my own personal experience, or that I should 'keep quiet' because I might be the 'boogie man'.
We all need to just 'tell it like it is' for each of us. The good, the bad, and the ugly. How else will we find out the real truth about HCV, tx, and everything else related. No muzzles please!
Thanks for respecting all of our points of view. And, by the way, we will ALL help the 'newbies' make their way through tx.
That is why many of us stay on the forum after clearing!
I fully agree with many who have posted on this thread, and just as strongly disagree with some others. That is how 'opinion' works.
DoubleDose
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