Aa
Post TX Side Effects for the Long Term
Good thread and badly needed IMO. Thought I'd continue it for others to chime in if they want.
First, what Snookmeister said "That what they are experiencing, is not in fact "rare", or "uncommon", but in fact the reality for MOST.. "
I've been dancing around the "most" word myself, but it sure seems that way at least for those of us geno 1's who went 48 weeks or more. "Rare" I don't think so. Thanks Snook for being so forthright.
Looking back, I do remember treatment being harsh and hard, but it was always presented in terms of the treatment period itself. Not what I might expect down the road after treatment. Being the red-blooded male I grew up as, once I started tx became a challenge to overcome. The only problem is that the prize for many that "win" this game may be worse than what they had before.
As others have so well put it, doctors are focused on treating the liver and the side effects during the treatment period. Afterwards it's "adios" in either a nice or not so nice way. Whether they don't have the time, inclination or motivation doesn't really matter. What matters is that objective information isn't getting out there when it really matters -- when someone sits down with their doctor for the treat or not treat decision.
I used to scoff some at alternative treaters like Dr. Zhang who preached that the real issue was fibrosis progression, not the virus itself. If I had to do it all over again, I think I would have given him a try first, even as a stage 3.
http://www.dr-zhang.com/drweil2.htm
-- Jim
First, what Snookmeister said "That what they are experiencing, is not in fact "rare", or "uncommon", but in fact the reality for MOST.. "
I've been dancing around the "most" word myself, but it sure seems that way at least for those of us geno 1's who went 48 weeks or more. "Rare" I don't think so. Thanks Snook for being so forthright.
Looking back, I do remember treatment being harsh and hard, but it was always presented in terms of the treatment period itself. Not what I might expect down the road after treatment. Being the red-blooded male I grew up as, once I started tx became a challenge to overcome. The only problem is that the prize for many that "win" this game may be worse than what they had before.
As others have so well put it, doctors are focused on treating the liver and the side effects during the treatment period. Afterwards it's "adios" in either a nice or not so nice way. Whether they don't have the time, inclination or motivation doesn't really matter. What matters is that objective information isn't getting out there when it really matters -- when someone sits down with their doctor for the treat or not treat decision.
I used to scoff some at alternative treaters like Dr. Zhang who preached that the real issue was fibrosis progression, not the virus itself. If I had to do it all over again, I think I would have given him a try first, even as a stage 3.
http://www.dr-zhang.com/drweil2.htm
-- Jim
I am 4 years post treatment and still suffering depression, anxiety, sleeplessness, brain fog , poor concentration.
I fear I am about to lose yet another job!
Any advice on how to treat these symptoms? I have been on every antidepressant known to medicine, I had a brief but welcome..respite with Zoloft.
I fear I am about to lose yet another job!
Any advice on how to treat these symptoms? I have been on every antidepressant known to medicine, I had a brief but welcome..respite with Zoloft.
Monotherapy would be great, but so far there is none that comes close that I have heard of.
It could be that some of the monotherapy people are hearing about is the very initial test for limited number of days and an attempt to evaluate response and safety.
Willy
It could be that some of the monotherapy people are hearing about is the very initial test for limited number of days and an attempt to evaluate response and safety.
Willy
Your post dovetails with my query about treatment options, particularly if treatment ASAP is not imperative because liver disease has not advanced too far.
I have the strong impression that, all other things equal, 24 weeks of SOC (in triple therapy) is MUCH better than 48 weeks and lower does of INF and ribaviron are MUCH preferred to higher doses.
I see this trend to monotherapy or at least shorter and less doses of SOC coming (though when is a big question mark). It's appealing to say "Get a good doctor and let him/her sort through this" but does that really happen? Is there a doctor who is REALLY on top of all the trials and treatment options and genetic indicators and other factors that predict or influence treatment outcomes and who will customize this for a particular situation? If so, who would that be in the SF Bay Area or Peninsula?
BTB
I have the strong impression that, all other things equal, 24 weeks of SOC (in triple therapy) is MUCH better than 48 weeks and lower does of INF and ribaviron are MUCH preferred to higher doses.
I see this trend to monotherapy or at least shorter and less doses of SOC coming (though when is a big question mark). It's appealing to say "Get a good doctor and let him/her sort through this" but does that really happen? Is there a doctor who is REALLY on top of all the trials and treatment options and genetic indicators and other factors that predict or influence treatment outcomes and who will customize this for a particular situation? If so, who would that be in the SF Bay Area or Peninsula?
BTB
I am happy to find this thread. What I say below is truth.
I took interferon and ribavirin for six months from june 08 to dec 08. I was advised of feeling flu-like symptoms. I have had Hep C a long time. I was feeling fine before starting treatment. My doctor sort of pushed me into the treatment. I was not wild about doing it.
So the treatment itself was very difficult. Could not work. Fuzzy vision. Mental confusion. Irritability. Fatigue.
During treatment, I developed psoriasis on me left elbow. I did not know that's what it was. I did not know what psoriasis was. I knew that the warnings said "Tell you doctor if you are having skin conditions." I did. he shrugged and said "It'll go away." I have since discovered on Medline that the appearance or worsening of psoriasis is for most clinicians cause to discontinue treatment.
After treatment, psoriasis kept spreading. in March, 09, my toes were hugely swollen and my feet were sore.
I had the most bizarre side-effect, too, in that spicy foods became intolerable in Feb - Mar 09. that faded away.
Long story short, I now have psoriasis on my penis, my scrotum, my legs, my arms, my back, my fingernails, my toenails.
I have psoriatic arthritis in my left ring and middle finger, my left wrist, my right wrist, my left ankle, my right knee, both hips, all my toes, going into my spine if I eat poorly.
My thyroid went whacky, too, and it did not recover.
I was handsome and strong before the treatment. The interferon took much of my life away.
I started treatment for psoriasis with "biologics" in May 09. The "biologics" lessen your immune system. Bad side effects for liver - my liver enzymes went way up. I have had to stop them. Actually, they seem like interferon in reverse. Very dangerous in their own right.
I now follow a fairly strict diet from necessity. If I eat cheese, wheat, sugar, too much coffee, etc, i become crippled from joint pain. My life has become dominated by fighting the side effects of interferon. Sun lamps all the time in an effort to lessen my psoriasis. Trying not to despair.
It is my impression that interferon just amps up your immune system without much control. It's like riding one of those bumper cars where the steering only kind of works. You never know exactly what it will hit.
It is very, very dangerous stuff. Most doctors who prescribe it have no idea how dangerous it is, IMO. I know mine didn't. I believe that Roche minimizes the potential side effects.
I am fairly certain that if the doctors had told me beforehand that I risked being crippled by joint pain and swollen stiff joints, I never would have undergone the treatment.
I took interferon and ribavirin for six months from june 08 to dec 08. I was advised of feeling flu-like symptoms. I have had Hep C a long time. I was feeling fine before starting treatment. My doctor sort of pushed me into the treatment. I was not wild about doing it.
So the treatment itself was very difficult. Could not work. Fuzzy vision. Mental confusion. Irritability. Fatigue.
During treatment, I developed psoriasis on me left elbow. I did not know that's what it was. I did not know what psoriasis was. I knew that the warnings said "Tell you doctor if you are having skin conditions." I did. he shrugged and said "It'll go away." I have since discovered on Medline that the appearance or worsening of psoriasis is for most clinicians cause to discontinue treatment.
After treatment, psoriasis kept spreading. in March, 09, my toes were hugely swollen and my feet were sore.
I had the most bizarre side-effect, too, in that spicy foods became intolerable in Feb - Mar 09. that faded away.
Long story short, I now have psoriasis on my penis, my scrotum, my legs, my arms, my back, my fingernails, my toenails.
I have psoriatic arthritis in my left ring and middle finger, my left wrist, my right wrist, my left ankle, my right knee, both hips, all my toes, going into my spine if I eat poorly.
My thyroid went whacky, too, and it did not recover.
I was handsome and strong before the treatment. The interferon took much of my life away.
I started treatment for psoriasis with "biologics" in May 09. The "biologics" lessen your immune system. Bad side effects for liver - my liver enzymes went way up. I have had to stop them. Actually, they seem like interferon in reverse. Very dangerous in their own right.
I now follow a fairly strict diet from necessity. If I eat cheese, wheat, sugar, too much coffee, etc, i become crippled from joint pain. My life has become dominated by fighting the side effects of interferon. Sun lamps all the time in an effort to lessen my psoriasis. Trying not to despair.
It is my impression that interferon just amps up your immune system without much control. It's like riding one of those bumper cars where the steering only kind of works. You never know exactly what it will hit.
It is very, very dangerous stuff. Most doctors who prescribe it have no idea how dangerous it is, IMO. I know mine didn't. I believe that Roche minimizes the potential side effects.
I am fairly certain that if the doctors had told me beforehand that I risked being crippled by joint pain and swollen stiff joints, I never would have undergone the treatment.
why are yu hanging out in the shower room on st. patty's day?? with a green one at that...it is a good post..thanks to all for info & imput..14 weeks to go before i can even think of complainin about 'lingering side effects' and thank yu goofydad for the levity-Can't get enuff of that!
Give the drug companies a break fella. How the h*ll are they going to find time to conduct studies in post-tx side effects when they're busy running getaway weekends for docs? But I will say this, the new breed of drug rep are so hot-hot-hot sometimes, that I don't think the average middle aged male doctor stands a chance. I mean I was drooling in the waiting room a few weeks ago while an rep for that new long-lasting epo drug was being ushered in. That meant I had to wait twenty minutes more. If my doc was younger, the wait would probably have been an hour :)
-- Jim
-- Jim
Up above in a previous post, a member here attempted to tell a funny, I assume. Because in it, she stated that why we aren't seeing any studies? I just have to laugh, as obviously AGAIN, somebody hasn't done research..That person forgets how all the interefron studies were brought about, and paid for.. The article I am about to link to, is a response to an article that was published on the front page on The New York Times, back on June 27, 2004.. This is how Dr's where rewarded for prescribing interferon for Scherring Plough, and how they were paid for conducting trials, etc.. Big, big scandal, in which Scherring Plough was fined over 345 million.. Boy, I guess we all forgot how honest the medical commuinty really is! Medicine is a business, nothing more!
<a href="http://www.newstarget.com/001298.html">Pharmacutical curroption</a>
<a href="http://www.newstarget.com/001298.html">Pharmacutical curroption</a>
Don't know what to make of those stories but just came back from a new derm who spent about an hour with me. It was obvious he never saw so much different stuff going on in the same person at the same time. Some suggest that most of these problems were pre-existing -- well, yes and no. True, I had pre-existing skin tendencies prior to treatment let's say a 1 or 2 on a scale of 1-10. Zero effect on QOL. Now, it's like 15 on that same scale and QOL is significantly effected. The fact that I had an underlying benign pre-existing skin issues prior does not make it any better for me. How many of us know exactly what is lurking just under the surface when we take interferon for long periods of time? Certainly one way to find out :)
-- Jim
-- Jim
and I'm in rapt confusion...
"I never saw an increase in fibrosis over all those years, and well might have had it not been for herbal prophylaxis."
I mean, how do you propose I keep the dang things on, that's what I want to know....and wouldn't they leave green smudges on the the thingie-ma-bobbie? Sure, fine for St Paddy's day, but you know, showering at the gym and all......
All kidding aside, thanks for the thread.....
"I never saw an increase in fibrosis over all those years, and well might have had it not been for herbal prophylaxis."
I mean, how do you propose I keep the dang things on, that's what I want to know....and wouldn't they leave green smudges on the the thingie-ma-bobbie? Sure, fine for St Paddy's day, but you know, showering at the gym and all......
All kidding aside, thanks for the thread.....
ha ha ha, wow, some of those stories!!! Do you have a pistol lying around? Cause I ain't got enough of my sleeping pills to do the job, ha ha! Man, that place a buzzkill or what??? They need a little bit of levity over there, we might send Goof and Can Man to go tag team them, geeeeesh!!!!
Anybody ever gone and read through this site? Not sure how to take some of the stories myself?
<a href="http://lloydwright.org/hepatitis_messages/Interferon_correspondence.htm">Interferon stories</a>
<a href="http://lloydwright.org/hepatitis_messages/Interferon_correspondence.htm">Interferon stories</a>
what an interesting thread, good arguments guys, at least I was in rapt attention...
And the suspense builds.....http://www.docmisha.com See her list of other practitioners trained in her protocol, which is not unlike Zhang's.
What I've heard over the years is that Zhang is top notch. His patient following is loyal and noisily enthusiastic. In fact, my own practitioner apprenticed with him decades ago. Word on the TCM street is also that his herbal formulas are overpriced, but heck, he's got two college bound kids, or so the story goes. I would agree with you that turning to TCM for help with various post-tx autoimmune problems makes all the sense in the world, as does your penchant for good Japanese food. You can find links to other practitioners at <ahref=http://www.docmisha.com> .
Another two cents worth here.
A broken leg isn't finished healing when the cast is taken off. It takes therapy and time to finish the job. Maybe it is the same with HCV and Peg TX. I dunno, just a thought.
Having a survey about sx before and after tx would be very eye opening. But, then the question has to be asked if the pre-tx sx's are possibly from the virus or something like Cryo that can be caused from having the virus. And other actual processes that can be linked to having the virus.
Age of infection could also be a factor, I think. Pre-adult contraction maybe might be harder on our body than adult contraction since we're still growing and developing the body that is supposed to last us throughout our lives. Kind of like only changing your cars oil every 10k miles and expecting it to last like you changed it every 3k miles. It has to have an effect.
There is so much to learn about this virus and lots of other things. I remember a member saying her mother had endometriosis years ago and was told it was all in her head. Today that is a recognized medical condition. I think it is irresponsible for any doctor to say there will be no lingering side effects from the tx when there are so many unanswered questions yet. In ten years perhaps they will be able to quantify lingering sx and the true effect of this virus on people from folks like us who are blazing the trail.
Now I feel like a cowgirl herding the cattle through new country, blazing a trail! I'm babbling now so I'll say G'day to you all for now.
miss
A broken leg isn't finished healing when the cast is taken off. It takes therapy and time to finish the job. Maybe it is the same with HCV and Peg TX. I dunno, just a thought.
Having a survey about sx before and after tx would be very eye opening. But, then the question has to be asked if the pre-tx sx's are possibly from the virus or something like Cryo that can be caused from having the virus. And other actual processes that can be linked to having the virus.
Age of infection could also be a factor, I think. Pre-adult contraction maybe might be harder on our body than adult contraction since we're still growing and developing the body that is supposed to last us throughout our lives. Kind of like only changing your cars oil every 10k miles and expecting it to last like you changed it every 3k miles. It has to have an effect.
There is so much to learn about this virus and lots of other things. I remember a member saying her mother had endometriosis years ago and was told it was all in her head. Today that is a recognized medical condition. I think it is irresponsible for any doctor to say there will be no lingering side effects from the tx when there are so many unanswered questions yet. In ten years perhaps they will be able to quantify lingering sx and the true effect of this virus on people from folks like us who are blazing the trail.
Now I feel like a cowgirl herding the cattle through new country, blazing a trail! I'm babbling now so I'll say G'day to you all for now.
miss
Guess I will chime in for my 2 cents worth. 1a starting VL 1.5 million with mild fibrosos after 33 yrs. Not feeling good at all before TX nuropathy in left arm and lots of leg pain,couldent sleep much. Started TX and in a week most all those symtoms vanished.went the 48 weeks clear at 12 and clear right after TX.At 12 weeks post TX relapsed. Still feeling much better than before TX,VL load at 5 months post TX 1 million so sure Im glad I did TX my quality of life is better.I really don't care if I clear hep C or not as long as my time here on this 3 rock from the sun is QUALITY time.If I start feeling bad for awhile I might consider standard TX again but otherwise I will wait for a shorter kinder TX.
Jim - quoting Zhang: "It is abnormal not to have viruses in our bodies. Some viruses have names and can be tested; some have no names and can't be tested. Viruses were the first living things on Earth and are one of the major causes of mutation. Bad mutations die off and good mutations become higher living things. We human beings are the highest living things on Earth-thanks to the virus. In millions of years of evolution, the human body has adopted mechanisms to deal with viruses. Given enough time, it will learn how to coexist with a newly invading virus. Gradually, our immune system can control it, keep it at bay, and prevent if from further harm."
What if the things happening to SVRs are not side effects. What if the body has to ADJUST to NOT HAVING the HepC virus. Reading your quote, the logic is that thirty years is a long time for the body to work out equilibrium with this virus. What if it just takes a long time to readjust to not having it there? Perhaps other critters jump in to their advantage and have to be accounted for? Perhaps resources used in one area take time to get reallocated.
Moreover, the liver, now functioning at full force is starting to clean more, pump more hormones and do all of the 61 or so things that it should have been doing but was too tired to do or damaged to do because of the virus. How does the body handle and assimilate all of these new processes? Could it simply be that we have removed something from our body that our body dealt with for many years and without it is a little confused? Is it too much to expect that it will take a few years to work out a thirty year habit?
Something else I noticed, IMHO it seems like I read about more SVRs with these post treatment "side effects" than relapsers? Are they expecting more, noticing more or are they simply adjusting more?
So the new thing to worry about is if you are feeling TOO GOOD after treatment might mean that you wont get your SVR - uh oh think I felt a little twinge there.
What if the things happening to SVRs are not side effects. What if the body has to ADJUST to NOT HAVING the HepC virus. Reading your quote, the logic is that thirty years is a long time for the body to work out equilibrium with this virus. What if it just takes a long time to readjust to not having it there? Perhaps other critters jump in to their advantage and have to be accounted for? Perhaps resources used in one area take time to get reallocated.
Moreover, the liver, now functioning at full force is starting to clean more, pump more hormones and do all of the 61 or so things that it should have been doing but was too tired to do or damaged to do because of the virus. How does the body handle and assimilate all of these new processes? Could it simply be that we have removed something from our body that our body dealt with for many years and without it is a little confused? Is it too much to expect that it will take a few years to work out a thirty year habit?
Something else I noticed, IMHO it seems like I read about more SVRs with these post treatment "side effects" than relapsers? Are they expecting more, noticing more or are they simply adjusting more?
So the new thing to worry about is if you are feeling TOO GOOD after treatment might mean that you wont get your SVR - uh oh think I felt a little twinge there.
Bob: "The people on this forum who had me feeling that it might be wise to extend treatment past 48 weeks are now saying that treatment might be more dangerous than the hep c"
Hi Bob,
Maybe you're talking about me in part. But if you remember, I went out of my way to state that 2 out of the 3 heaptologists I consulted suggested 48 weeks based on my RVR. In the end, I went with my treating hep, who added six weeks based on my age and histology (stage 3). Given my investment to that date, the extra six weeks seemed reasonable and far different from the 72-weeks or even 2 years some suggest.
As to "treatment might be more dangerous than hep C" -- I don't think anyone has made that statement without qualification. What is being said by some is that for those with little or no liver damage, the risks of treatment may outweigh the benefits and therefore a watch n' wait approach is reasonable, and something I personally would favor. In fact, I did watch n' wait for a number of years and only treated based on a stage 3 biopsy.
But for arguments sake, I still don't see a discrepency between recommending extended treatment for some and at the same time recommending others watch n' wait. Among other things, the first recommendation may be for those with significant liver damage and/or slower responders; and the second for someone with little or no liver damage. Different animals. IMO.
So how has post tx been for you? Any PCR's yet? Hope this finds you well.
-------------
Califia,
First, congratulations on what seems to me a definite SVR. It's been a long journey for you.
I also appreciate your concern about my "second-guessing" and can't disagree that it's "unproductive and hurtful". I was just being honest and I guess it's as stage I have to pass through -- I do not plan on dwelling there very long but maybe -- at least for me -- sometimes you have to look in the rear view mirror before you begin your move ahead.
As to TCM, what have you heard of Zhang, except that he's apparently expensive? I sort of picked Zhang only because he seems to have some sort of track record with hep c. Last time I saw an herbalist/accupunturist it was only on the recommendation of a friend and I really didn't know what herbs he gave me. My liver enzmes rose and it was either his herbs or my hep c booster around the same time -- or a combination. So, I guess what I'm saying is I'm a bit leery of knocking on another herbalist's door so maybe a "name brand" Dr. of TCM might be better?
At this point, since it looks like I'm SVR, my purpose in TCM is not to clear the virus or even liver healthy specifically, but to help with my post treatment side effects -- specifically some cognitive issues but more troublesome some skin issues namely sebosporiasis and rosacea.
Stay well and thanks for responding.
-- Jim
Hi Bob,
Maybe you're talking about me in part. But if you remember, I went out of my way to state that 2 out of the 3 heaptologists I consulted suggested 48 weeks based on my RVR. In the end, I went with my treating hep, who added six weeks based on my age and histology (stage 3). Given my investment to that date, the extra six weeks seemed reasonable and far different from the 72-weeks or even 2 years some suggest.
As to "treatment might be more dangerous than hep C" -- I don't think anyone has made that statement without qualification. What is being said by some is that for those with little or no liver damage, the risks of treatment may outweigh the benefits and therefore a watch n' wait approach is reasonable, and something I personally would favor. In fact, I did watch n' wait for a number of years and only treated based on a stage 3 biopsy.
But for arguments sake, I still don't see a discrepency between recommending extended treatment for some and at the same time recommending others watch n' wait. Among other things, the first recommendation may be for those with significant liver damage and/or slower responders; and the second for someone with little or no liver damage. Different animals. IMO.
So how has post tx been for you? Any PCR's yet? Hope this finds you well.
-------------
Califia,
First, congratulations on what seems to me a definite SVR. It's been a long journey for you.
I also appreciate your concern about my "second-guessing" and can't disagree that it's "unproductive and hurtful". I was just being honest and I guess it's as stage I have to pass through -- I do not plan on dwelling there very long but maybe -- at least for me -- sometimes you have to look in the rear view mirror before you begin your move ahead.
As to TCM, what have you heard of Zhang, except that he's apparently expensive? I sort of picked Zhang only because he seems to have some sort of track record with hep c. Last time I saw an herbalist/accupunturist it was only on the recommendation of a friend and I really didn't know what herbs he gave me. My liver enzmes rose and it was either his herbs or my hep c booster around the same time -- or a combination. So, I guess what I'm saying is I'm a bit leery of knocking on another herbalist's door so maybe a "name brand" Dr. of TCM might be better?
At this point, since it looks like I'm SVR, my purpose in TCM is not to clear the virus or even liver healthy specifically, but to help with my post treatment side effects -- specifically some cognitive issues but more troublesome some skin issues namely sebosporiasis and rosacea.
Stay well and thanks for responding.
-- Jim
as I hit the submit button, i noticed this was missing
http://www.hepcuk.info/data/usercontentroot/home/treatments/Post%20Treatment%20Survey.asp
http://www.hepcuk.info/data/usercontentroot/home/treatments/Post%20Treatment%20Survey.asp
here is the link to a survey chevy found a while back, maybe you can start there. And by all means, if you feel strongly that tx caused your present problems, contact the Dept of Health, a letter would be my choice.
on the other hand, if you felt that no lingering things have come from tx, a letter stating so, might offer a view of both sides of the coin, hopefully they won't throw any of the letters away.
on the other hand, if you felt that no lingering things have come from tx, a letter stating so, might offer a view of both sides of the coin, hopefully they won't throw any of the letters away.
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.
