When do you think there will be a cure?
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Cross-stitch gal
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That's a desire all of us have, but an answer none of us have. There are articles stating of people trying for a cure. And, also some say that it's possible that we maybe close. However, it gets pretty confusing trying to read all that info. So, for now we're just thankful to be able to have found each other to talk to and lean on if need be. And, hopefully someday there will be a cure!!! Lots of hugs!!! 
I posted this on another thread in answer to this very question:
I doubt that Crohn's will be cured in our lifetimes - if by "cure" we mean that the disease is treated, the symptoms and other ill effects are abolished by the treatment, the treatment can then be stopped, and the patient then goes back to leading a normal life with little or no risk of return of the disease.
Unfortunately, this is not a simple condition like say an infectious disease where if you stamp out the germ the disease is gone. It's far more complex than that.
What has gotten enormously better with Crohn's over the past 20 years is the management of the disease - treatment to reduce or abolish the symptoms, reduce the damage to the gut, and significantly improve the quality of life for the patients.
The current research holds out the very real hope management of the disease will continue to improve over the next 20 years such that most patients can live a near-normal life. Not completely normal and not all patients - the disease is far too variable in presentation and severity for that to be a realistic hope. But I'm confident that things overall will continue to get better and better as the research goes forward.
Bottom line for the future: Cure - No. Better and better management - Yes.
I doubt that Crohn's will be cured in our lifetimes - if by "cure" we mean that the disease is treated, the symptoms and other ill effects are abolished by the treatment, the treatment can then be stopped, and the patient then goes back to leading a normal life with little or no risk of return of the disease.
Unfortunately, this is not a simple condition like say an infectious disease where if you stamp out the germ the disease is gone. It's far more complex than that.
What has gotten enormously better with Crohn's over the past 20 years is the management of the disease - treatment to reduce or abolish the symptoms, reduce the damage to the gut, and significantly improve the quality of life for the patients.
The current research holds out the very real hope management of the disease will continue to improve over the next 20 years such that most patients can live a near-normal life. Not completely normal and not all patients - the disease is far too variable in presentation and severity for that to be a realistic hope. But I'm confident that things overall will continue to get better and better as the research goes forward.
Bottom line for the future: Cure - No. Better and better management - Yes.
I have been reading a lot - and would guess 10-15 years. The reason I say this is that at least for some, they are pushing in the right direction - that Crohn's is not autoimmune but rather immune-deficiency. They already have the SSI vaccine in trials that has shown great results, the MAP stuff - Redhill is working on publishing the results this year. All the funding that is going to understanding the microbiome - and I just read an article in Immunology magazine that was posted to be published on May 27, 2016 - so practically new that suggests the gut makeup microbiome wise can be a CAUSE rather than an after effect. This points to more of the immune deficiency. So if that can be proven by any one of the items I noted above, then the path to a cure wouldn't be autoimmune which is like Type 1 diabetes, etc... but rather returning the state of the gut dysbiosis to what it was before onset. My husband was diagnosed and he is 28, I am confident - based on all that I am reading, that this is not something he will be dying with one day.
Take a look at these threads - they will give you a better idea of what I mean
SSI Trial (based on the premise that it helps our body eradicate AEIC - which is an aggressive form of E. Coli):
http://www.crohnsforum.com/showthread.php?t=77808
http://www.crohnsforum.com/showthread.php?t=62919
http://www.crohnsforum.com/showthread.php?t=77900
http://www.crohnsforum.com/showthread.php?t=68242
There is a bunch more - search in the forum and you will see all the threads.
MAP Theory - Which basically says Mycobacterium Avium Paratuberculosis tends to infect those that are susceptible meaning Crohn's people and cause the symptoms:
http://www.crohnsforum.com/showthread.php?t=59071
http://www.crohnsforum.com/showthread.php?t=66696
Again, search MAP, Anti-MAP and go on Youtube and lookup these great lectures on Dr. Behr - a physician who gives a very good, detailed lecture on what is happening when you get "infected."
Again, you will hear a lot of people say this is autoimmune - I am not going to try to convince you otherwise because that is the current standard of care and definition of Crohn's. However, I have read numerous - and i mean quite a few journal articles saying this can no longer be identified as just immune, the environment plays a huge role (i.e. a bug? An infection?) etc...and that is what they are focusing on now. That shift in perspective - once it is solidified, will change how they try to find a "Cure" and that is why I said 10-15 but I feel it is much sooner, because I already see that happening based on my reading which i do every day like clockwork to check up on what is new within the past 24 hours....
SSI Trial (based on the premise that it helps our body eradicate AEIC - which is an aggressive form of E. Coli):
http://www.crohnsforum.com/showthread.php?t=77808
http://www.crohnsforum.com/showthread.php?t=62919
http://www.crohnsforum.com/showthread.php?t=77900
http://www.crohnsforum.com/showthread.php?t=68242
There is a bunch more - search in the forum and you will see all the threads.
MAP Theory - Which basically says Mycobacterium Avium Paratuberculosis tends to infect those that are susceptible meaning Crohn's people and cause the symptoms:
http://www.crohnsforum.com/showthread.php?t=59071
http://www.crohnsforum.com/showthread.php?t=66696
Again, search MAP, Anti-MAP and go on Youtube and lookup these great lectures on Dr. Behr - a physician who gives a very good, detailed lecture on what is happening when you get "infected."
Again, you will hear a lot of people say this is autoimmune - I am not going to try to convince you otherwise because that is the current standard of care and definition of Crohn's. However, I have read numerous - and i mean quite a few journal articles saying this can no longer be identified as just immune, the environment plays a huge role (i.e. a bug? An infection?) etc...and that is what they are focusing on now. That shift in perspective - once it is solidified, will change how they try to find a "Cure" and that is why I said 10-15 but I feel it is much sooner, because I already see that happening based on my reading which i do every day like clockwork to check up on what is new within the past 24 hours....
I found a great thread that talks about Crohn's being an immune deficiency:
http://www.crohnsforum.com/showthread.php?p=826266
I apologize if you had already seen all these that I am posting, I just want to make sure you can see that there is a very very high chance of a cure in your lifetime (i.e. sorry I don't know how old you are but i am assuming that you have another 10-15 years available)
http://www.crohnsforum.com/showthread.php?p=826266
I apologize if you had already seen all these that I am posting, I just want to make sure you can see that there is a very very high chance of a cure in your lifetime (i.e. sorry I don't know how old you are but i am assuming that you have another 10-15 years available)
I found a great thread that talks about Crohn's being an immune deficiency:
http://www.crohnsforum.com/showthread.php?p=826266
I apologize if you had already seen all these that I am posting, I just want to make sure you can see that there is a very very high chance of a cure in your lifetime (i.e. sorry I don't know how old you are but i am assuming that you have another 10-15 years available)
It's my 19 year old son who is sick.
Cross-stitch gal
Moderator
Cure or not, this challenge of ours is a constant learning experience. For years I was sick, then another few I was in remission, then was sick again. Mostly, it's a roller coaster ride. Just basically got to be willing to go through a trial and error to learn your body. Different foods, medications and or ways to relax. Not always the easiest thing on earth. But, you do the best you can. We're here for both you and your son. Take care.
Except Scipio and scared1, everyone else have "candy-coated" it or spoken in vague generalities. If one does not have an answer, I think the better option is not to comment rather than say that one does not have an answer.
I think Scipio is right. The word lifetime is vague; let us take 20 years. The real "cures" in medicine, as Scipio says so eloquently have mostly come about in case of infections after the advent of antibiotics. Other conditions are "managed", such as diabetes or asthma. In most cases, such diseases have a genetic component. They are difficult to understand, as the interaction of the genetic and the environmental is very confounding. I think this is precisely what is happening with Crohn's Disease.
After long years of research on diabetes, multiple sclerosis, asthma, cancer there has been no "cure". This is a humbling thought. I am sorry that I have not been able to go through scared1's articles, but I believe that there would not be any cure in the next 50 years.
There will be better management, as Scipio says, and probably most patients would lead a near-normal life (when exactly that would happen is not possible to say) but there would be a minority of patients who would go through hell. and the near-normal lives can fall apart as well.
I think it is difficult to be more precise, and I am only an amateur in the area (my Masters is in geology, and a second in management, and currently a research scholar in management) but I do not mince words. I say it like it is. If people do not want to hear what I say, then that is not my problem. I see no reason to be "encouraged" in such a situation.
In the news here today has been talk of chemotherapy and stem cell treatment "rebooting" the immune system of MS sufferers halting the disease. Maybe that's a "cure" for us too but the treatment sounds worse than the disease.
Is "cure" the right word for a chronic disease? If cancer could be made chronic, i.e. you could live a normal lifetime with treatment, that would be a huge triumph and would be pronounced as a cure.
Is "cure" the right word for a chronic disease? If cancer could be made chronic, i.e. you could live a normal lifetime with treatment, that would be a huge triumph and would be pronounced as a cure.
Regarding the news item that you write about, I have no idea. But I would say that there have been many supposed "breakthroughs" which are not worth the paper they are printed on. I am not commenting on this particular treatment.
Regarding cure for a chronic disease": there is an implicit assumption that it is incurable when you say chronic
Also, if a cancer patient can lead a near-normal life, then that is close to a "cure". One of my former professors got his leg amputated and travels all around the world - this is close to a "cure". But if the quality of life sucks, one is unable to work, then as an inhabitant of the developing world and a conscientious person, give me death any day.There is also the issue of access to drugs in the developing world. Since 99% (a ballpark figure) of posts here are from the developed world, there is not much concern about that in these fora.
Hi lenny,
So sorry, I must have misunderstood! I do hope and feel that your son's will not have to live with this for life
"Is "cure" the right word for a chronic disease? If cancer could be made chronic, i.e. you could live a normal lifetime with treatment, that would be a huge triumph and would be pronounced as a cure."
Some forms of cancer that used to be completely untreatable (except by surgery) can sometimes be managed now. A friend of mine (a nonsmoker) came down with metastatic lung cancer that spread to her brain. She got all the routine chemo and radiation treatments of the day, but it was clear she was going down fast. But then one of the new modern drugs, Tarceva, came along just in time and pulled her out of her nosedive.
She's not cured. She still has cancer, but it's sort of idling along at a low level, making her a little sick sometimes but not too bad. She can work. She has joy in her life. She has lived to see her son, who was in middle school when got sick, grow up and graduate from college.
But like Crohn's cancer is very variable. Not all cases of her type of cancer can be managed as well as hers has been. But overall the future for both Crohn's and cancer is getting brighter.
The future for Crohn's promises new and better therapies. On the Crohn's horizon we've got newer biologics with different modes of action beyond ant-TNF, better knowledge of the role of the microbiome and the use of fecal transplants, vaccines, better knowledge of diets and development of medical foods, and so on. They won't all pan out, and the ones that do won't work equally well for all patients. But in general this adds up to more options, better management, and better quality of life.
Some forms of cancer that used to be completely untreatable (except by surgery) can sometimes be managed now. A friend of mine (a nonsmoker) came down with metastatic lung cancer that spread to her brain. She got all the routine chemo and radiation treatments of the day, but it was clear she was going down fast. But then one of the new modern drugs, Tarceva, came along just in time and pulled her out of her nosedive.
She's not cured. She still has cancer, but it's sort of idling along at a low level, making her a little sick sometimes but not too bad. She can work. She has joy in her life. She has lived to see her son, who was in middle school when got sick, grow up and graduate from college.
But like Crohn's cancer is very variable. Not all cases of her type of cancer can be managed as well as hers has been. But overall the future for both Crohn's and cancer is getting brighter.
The future for Crohn's promises new and better therapies. On the Crohn's horizon we've got newer biologics with different modes of action beyond ant-TNF, better knowledge of the role of the microbiome and the use of fecal transplants, vaccines, better knowledge of diets and development of medical foods, and so on. They won't all pan out, and the ones that do won't work equally well for all patients. But in general this adds up to more options, better management, and better quality of life.
You are a professional in the field and I respect your knowledge. My viewpoint (very amateurish) more or less concurs with yours. i am happy for your friend.
But please consider this: Life is competitive. She is, as you say, a little sick sometimes. What if that sickness happens on a crucial day at work? When marginal differences make or break things, is not this a matter of concern?
I know that some people like you are doing well in their work, but what fraction of the Crohn's population are they? I see here on the forum distressed children, people out-of-work, people thrown out of relationships and the like. People who achieved remission and then the disease came back. Honestly, yes, although there is promise of better management of the disease, but we have a long long way to go.
I am sorry I cannot engage in a more technical discussion with you as I lack the required knowledge. Forgive me for that. I look forward to more contributions from you.
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I've had Crohn's for 29 years. I've heard for years a cure was getting close but it never comes. Will there be a cure? I am sure but like someone else said, not in our lifetime. Better ways to manage it? Certainly. Unfortunately some of those ways come with risks.
I'm a cancer survivor, 7 years now. I am considered cured. I was hesitant to use that word but that is what I was told by year 5. Before that I was in remission. Cancer can be cured, but depends in my opinion on what cancer it is, how bad it is, how long you had it etc.
I'm a cancer survivor, 7 years now. I am considered cured. I was hesitant to use that word but that is what I was told by year 5. Before that I was in remission. Cancer can be cured, but depends in my opinion on what cancer it is, how bad it is, how long you had it etc.
"But please consider this: Life is competitive. She is, as you say, a little sick sometimes. What if that sickness happens on a crucial day at work? When marginal differences make or break things, is not this a matter of concern?
I know that some people like you are doing well in their work, but what fraction of the Crohn's population are they? I see here on the forum distressed children, people out-of-work, people thrown out of relationships and the like. People who achieved remission and then the disease came back. Honestly, yes, although there is promise of better management of the disease, but we have a long long way to go."
Oh I don't disagree with you at all. We do have a long way to go, both in cancer and in Crohn's. In the case of my friend her career has suffered. There is no question. Her life and her career are not as good as they would have been had she not gotten sick. But she did get sick, and without the new therapies she would have been dead for the past 8 or 10 years or so. So depending on which comparison you make you could say her life has turned out to be sub-optimal due to her disease, or you could say her life has turned out to be incredibly wonderful due having been saved by the new drug. It's a case of "compared to what?"
By enumerating some of the promising Crohn's therapies on the horizon I certainly don't mean to paint a rosy picture. But I do mean to suggest some degree of hope to people who are currently suffering from Crohn's with little or no relief in sight. But most I certainly agree that we have a long, long way to go.
I know that some people like you are doing well in their work, but what fraction of the Crohn's population are they? I see here on the forum distressed children, people out-of-work, people thrown out of relationships and the like. People who achieved remission and then the disease came back. Honestly, yes, although there is promise of better management of the disease, but we have a long long way to go."
Oh I don't disagree with you at all. We do have a long way to go, both in cancer and in Crohn's. In the case of my friend her career has suffered. There is no question. Her life and her career are not as good as they would have been had she not gotten sick. But she did get sick, and without the new therapies she would have been dead for the past 8 or 10 years or so. So depending on which comparison you make you could say her life has turned out to be sub-optimal due to her disease, or you could say her life has turned out to be incredibly wonderful due having been saved by the new drug. It's a case of "compared to what?"
By enumerating some of the promising Crohn's therapies on the horizon I certainly don't mean to paint a rosy picture. But I do mean to suggest some degree of hope to people who are currently suffering from Crohn's with little or no relief in sight. But most I certainly agree that we have a long, long way to go.
By enumerating some of the promising Crohn's therapies on the horizon I certainly don't mean to paint a rosy picture. But I do mean to suggest some degree of hope to people who are currently suffering from Crohn's with little or no relief in sight. But most I certainly agree that we have a long, long way to go.
With trepidation, can I ask your opinion on the Anti-Map Therapy which supposedly holds promise? Would that be significantly successful?
With trepidation, can I ask your opinion on the Anti-Map Therapy which supposedly holds promise? Would that be significantly successful?
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Let me preface by saying that I have not studied Ant-MAP specifically in great detail. In general, it fits within the common theory that IBD is caused by an inappropriate immune response to bacterial antigens in the gut resulting in damage to gut tissue. And antibiotics have been used with some moderate success to treat some cases of IBD for a while now. So the Mycobacterium avium p. bug may well be one of the culprits. But I doubt that it's the whole story. MAP may not be the only bug or even the most common key bug in triggering the IBD immune response.
And given the harsh battery of antibiotics they give in anti-MAP therapy. it wouldn't surprise me if it worked by killing off not only the MAP but also a whole bunch of other potential IBD-causing pathogens as well. They really whack the gut pretty hard with antibiotics. So the therapy may well work in some cases but for the (partially) wrong reason.
One thing I don't like about anti-MAP, especially the vaccine effort, is that the websites touting it tend to show a lot of testimonials rather than data, and that's a red flag that you might be dealing with at best a fringe therapy and at worst quackery. Also the fact that the MAP theory has been around for so long without really delivering the goods gives rise to the notion that MAP might turn out to be for IBD what laetrile was for cancer.
But setting that aside, overall, I'm keeping an open mind about it. The theory behind it is reasonably sound. And if it works it works. For those it has already helped, I certainly don't begrudge anyone relief from their Crohn's no matter how they obtained it. But in the end, like all new therapies, it will have to succeed or fail based on data from sound science.
Added note: the unproven new therapy that I'm quietly excited about or at least hopeful for is mongersen.
And given the harsh battery of antibiotics they give in anti-MAP therapy. it wouldn't surprise me if it worked by killing off not only the MAP but also a whole bunch of other potential IBD-causing pathogens as well. They really whack the gut pretty hard with antibiotics. So the therapy may well work in some cases but for the (partially) wrong reason.
One thing I don't like about anti-MAP, especially the vaccine effort, is that the websites touting it tend to show a lot of testimonials rather than data, and that's a red flag that you might be dealing with at best a fringe therapy and at worst quackery. Also the fact that the MAP theory has been around for so long without really delivering the goods gives rise to the notion that MAP might turn out to be for IBD what laetrile was for cancer.
But setting that aside, overall, I'm keeping an open mind about it. The theory behind it is reasonably sound. And if it works it works. For those it has already helped, I certainly don't begrudge anyone relief from their Crohn's no matter how they obtained it. But in the end, like all new therapies, it will have to succeed or fail based on data from sound science.
Added note: the unproven new therapy that I'm quietly excited about or at least hopeful for is mongersen.
Thank you for that excellent answer. I am reading about mongersen here:
http://www.fiercebiotech.com/r-d/cr...er-potential-and-frets-of-celgene-s-mongersen
This is an inexact science like management science. Sales forecast does not always turn out true as the assumptions behind the models are not fulfilled. Similarly, as you so eloquently noted "Not completely normal and not all patients - the disease is far too variable in presentation and severity for that to be a realistic hope".
http://www.fiercebiotech.com/r-d/cr...er-potential-and-frets-of-celgene-s-mongersen
This is an inexact science like management science. Sales forecast does not always turn out true as the assumptions behind the models are not fulfilled. Similarly, as you so eloquently noted "Not completely normal and not all patients - the disease is far too variable in presentation and severity for that to be a realistic hope".
From what I've read, and the opinion I've formed, I'm doubtful a cure will be found by our main stream medical system - at least not in my life time. Hope I'm wrong about that. Many have written about the problems with the lack of progress being seen with many diseases.
One person that comes to mind about the problems seen in medical research is Dr. Marcia Angell. She is a former New England Journal of Medicine editor. She feels most drugs being developed today are what are called "me too" drugs. These are drugs that are copies of existing drugs but advertised as new and better, despite a lack of proof of that.
She feels that only a dozen new drugs that have come to market in the last decade were innovative and possibly helpful.
One person that comes to mind about the problems seen in medical research is Dr. Marcia Angell. She is a former New England Journal of Medicine editor. She feels most drugs being developed today are what are called "me too" drugs. These are drugs that are copies of existing drugs but advertised as new and better, despite a lack of proof of that.
She feels that only a dozen new drugs that have come to market in the last decade were innovative and possibly helpful.
I don't know whether there will be a cure someday in my lifetime.
What's important is that there has been a lot of progress in the last 30 years and there will be in the years to come. Even if there is no cure in the foreseeable future, we will have new molecules which means more options and better management of the disease.
There is a lot of research going on and we can't know for sure when there will be a breakthrough.
My bet is on the microbiome studies, right now, we've barely scratched the surface but I really think that a better understanding of what is going on down there could lead to real improvements for us.
What's important is that there has been a lot of progress in the last 30 years and there will be in the years to come. Even if there is no cure in the foreseeable future, we will have new molecules which means more options and better management of the disease.
There is a lot of research going on and we can't know for sure when there will be a breakthrough.
My bet is on the microbiome studies, right now, we've barely scratched the surface but I really think that a better understanding of what is going on down there could lead to real improvements for us.
I agree with Seengi. I think the microbiome of the gut plays a Huge role in a lot of diseases including Crohns and UC among other illnesses. The gut is the hub of the immune system. The microbiome is a very delicate ecosystem that keeps the immune system running smoothly. If that gets disrupted by any number of things ( antibiotic use, severe long term stress, bad lifestyle habits, bad diet, etc..) then it no longer functions optimally and that is when the immune system is no longer working up to par. That leaves the door open for disease states to take hold. Also there may be a genetic mutation in some people that gets triggered that can put a person at risk for certain diseases.
There will never be a drug that will cure a chronic illness, drugs are only meant to manage the diseases symptoms. They are doing research right now on the microbiome of the gut as well as other organs ( bladder) and how they effect the bodies function. Will there be a cure for these disease one day? Well that is a tough question. I think there definitely is the potential for finding a cure but I am less hopeful even if a cure is to be found that it would be let out. Greed is Huge in the Medical Industry and they are in cahoots with the Pharmaceutical companies. There is Loads of $$$$ to be made off of sick people, especially chronically ill people. If we lived in a world where the interest of the people was really #1, then yeah, I would say there definitely could be a cure. The sad truth is that a lot of diseases out there today probably already could have been cured but greed sadly trumps the overall health and well being of the people in the world. It is a sad truth. That being said, we are our own advocates and have to do research ourselves and not rely on doctors to do it. Obviously we are limited, but we surely can try and see what we can do naturally to help our bodies heal ( diet, lifestyle, avoiding antibiotics as much as possible when we can etc..). I realize diet will not cure any illness, but we can give our bodies a chance just by trying to eat as healthy and avoid ingesting bad things as much as we can. That is all we can do.
There will never be a drug that will cure a chronic illness, drugs are only meant to manage the diseases symptoms. They are doing research right now on the microbiome of the gut as well as other organs ( bladder) and how they effect the bodies function. Will there be a cure for these disease one day? Well that is a tough question. I think there definitely is the potential for finding a cure but I am less hopeful even if a cure is to be found that it would be let out. Greed is Huge in the Medical Industry and they are in cahoots with the Pharmaceutical companies. There is Loads of $$$$ to be made off of sick people, especially chronically ill people. If we lived in a world where the interest of the people was really #1, then yeah, I would say there definitely could be a cure. The sad truth is that a lot of diseases out there today probably already could have been cured but greed sadly trumps the overall health and well being of the people in the world. It is a sad truth. That being said, we are our own advocates and have to do research ourselves and not rely on doctors to do it. Obviously we are limited, but we surely can try and see what we can do naturally to help our bodies heal ( diet, lifestyle, avoiding antibiotics as much as possible when we can etc..). I realize diet will not cure any illness, but we can give our bodies a chance just by trying to eat as healthy and avoid ingesting bad things as much as we can. That is all we can do.
"I think there definitely is the potential for finding a cure but I am less hopeful even if a cure is to be found that it would be let out. Greed is Huge in the Medical Industry and they are in cahoots with the Pharmaceutical companies. There is Loads of $$$$ to be made off of sick people, especially chronically ill people. If we lived in a world where the interest of the people was really #1, then yeah, I would say there definitely could be a cure. The sad truth is that a lot of diseases out there today probably already could have been cured but greed sadly trumps the overall health and well being of the people in the world. It is a sad truth."
I disagree that doctors and/or pharma companies are holding back on discovering cures in order to keep people sick and thus make money off treating chronic diseases. Such cynical notions do not square with the facts. Take the example of hepatitis C. For many decades it's been a huge problem as a chronic infection. If you view the medical industry as evil and greedy then chronic Hep C was real money maker. But that didn't stop the researchers and pharma companies from working away for decades, in fierce competition with each other, racing to make the Hep C management drugs obsolete, racing to be the first and best at finding a true cure for Hep C infection.
And they succeeded. First Merck and Vertex Pharmaceuticals each developed a true cure, albeit both with significant side effects and limitations Then a few years later Gilead came out with wonderful cure that didn't have the bad side effects that the first two did. And now AbbVie has come along with its similar cure and is driving the prices down with competition. The drug companies used to make a lot of money selling drugs to manage the disease. Now they make a lot of money curing the disease instead.
If the deliberately-withhold-cures theory were correct, none of these new Hep C wonder drugs would have been developed. It's the same with IBD. If they could develop a cure they would. And I'm sure some are trying. Now that's not say that drug companies are non-profit charities with pure hearts of gold. It's very likely they will charge a high price for a Crohn's cure if and when they come up with it. Perhaps outrageously high. That's commonly their current business model. But that's a quite different level of greed and evil from saying they are deliberately withholding a cure.
There are big bucks and Nobel prizes awaiting the people who manage to come up with a true cure for Crohn's. It just doesn't make sense that they would deliberately avoid finding such a cure in order to keep selling us prednisone, azathioprine, and biologics.
I disagree that doctors and/or pharma companies are holding back on discovering cures in order to keep people sick and thus make money off treating chronic diseases. Such cynical notions do not square with the facts. Take the example of hepatitis C. For many decades it's been a huge problem as a chronic infection. If you view the medical industry as evil and greedy then chronic Hep C was real money maker. But that didn't stop the researchers and pharma companies from working away for decades, in fierce competition with each other, racing to make the Hep C management drugs obsolete, racing to be the first and best at finding a true cure for Hep C infection.
And they succeeded. First Merck and Vertex Pharmaceuticals each developed a true cure, albeit both with significant side effects and limitations Then a few years later Gilead came out with wonderful cure that didn't have the bad side effects that the first two did. And now AbbVie has come along with its similar cure and is driving the prices down with competition. The drug companies used to make a lot of money selling drugs to manage the disease. Now they make a lot of money curing the disease instead.
If the deliberately-withhold-cures theory were correct, none of these new Hep C wonder drugs would have been developed. It's the same with IBD. If they could develop a cure they would. And I'm sure some are trying. Now that's not say that drug companies are non-profit charities with pure hearts of gold. It's very likely they will charge a high price for a Crohn's cure if and when they come up with it. Perhaps outrageously high. That's commonly their current business model. But that's a quite different level of greed and evil from saying they are deliberately withholding a cure.
There are big bucks and Nobel prizes awaiting the people who manage to come up with a true cure for Crohn's. It just doesn't make sense that they would deliberately avoid finding such a cure in order to keep selling us prednisone, azathioprine, and biologics.
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Scipio,
I have a question for you. I know a little about hep C. My retired librarian mother tested positive for Hep c. Thankfully her liver tested out fine and healthy. She has no signs of cancer either. She is doing well without any sign of illness.
Typically when I tell people this the reply is that my mom must have inactive hepatitis C. I'm not sure what this means, it doesn't seem to have a clear definition, but the answer seems to make other happy.
My questions are, are the new hepatitis C drug resulting in fewer liver transplants? Are people healthier from the drugs? I have not worked much to find this information. I looked a little in the past but didn't see anything. i'm guessing the information can be found somewhere though.
I've seen some mention that while the new and old drugs can help a person stop testing positive for the hepatitis C virus, the liver can still be damaged and in need of replacement.
There is an alternative theory for what causes liver damage from hepatitis C. Reportedly a majority that test positive for the virus, and need a new liver are said to be those that are heavy drug and alcohol users. Some say that it is the recreational drugs that are causing the damage. Hard to say of course what is true.
The late ABC reporter Nick Regush would write in his weekly column and challenge those in the medical community to prove that Hep C was not a hoax. Reportedly no one challenged him. Part of one of his write ups can be read here:
https://jonrappoport.wordpress.com/2014/03/17/disease-hoax-disease-game-2/
I have a question for you. I know a little about hep C. My retired librarian mother tested positive for Hep c. Thankfully her liver tested out fine and healthy. She has no signs of cancer either. She is doing well without any sign of illness.
Typically when I tell people this the reply is that my mom must have inactive hepatitis C. I'm not sure what this means, it doesn't seem to have a clear definition, but the answer seems to make other happy.
My questions are, are the new hepatitis C drug resulting in fewer liver transplants? Are people healthier from the drugs? I have not worked much to find this information. I looked a little in the past but didn't see anything. i'm guessing the information can be found somewhere though.
I've seen some mention that while the new and old drugs can help a person stop testing positive for the hepatitis C virus, the liver can still be damaged and in need of replacement.
There is an alternative theory for what causes liver damage from hepatitis C. Reportedly a majority that test positive for the virus, and need a new liver are said to be those that are heavy drug and alcohol users. Some say that it is the recreational drugs that are causing the damage. Hard to say of course what is true.
The late ABC reporter Nick Regush would write in his weekly column and challenge those in the medical community to prove that Hep C was not a hoax. Reportedly no one challenged him. Part of one of his write ups can be read here:
https://jonrappoport.wordpress.com/2014/03/17/disease-hoax-disease-game-2/
The one drug that is out that supposedly cures hep C is called Harvoni. Here is the catch, it does not cure Hep C in everyone, though it does have a pretty good success rate so far. More time is needed to see how well it works over time. One of the other Huge issues is that it costs about $1,125 per pill. Yes, you heard that right. You also need to take it for up to 12 weeks which would cost over $94,000! And still, not a 100% guarantee it will cure you. It has had a successful rate so for, but still not everyone gets cured. Imagine spending $94,000 and not getting cured. So far some insurance companies will cover part of it, I think it depends on your insurance company.
Sorry, but there is a lot of corruptness when it comes to health care, pharmaceuticals, hospitals etc.. They are definitely out to make a buck. One of the biggest problems is that the FDA and federal government will not put out the money for the researchers to look for cures. To find a cure for any given disease it costs Millions and millions of dollars in research. They would much rather put money into the development of drugs as they will gain a profit there. Especially on drugs that treat symptoms where you have to keep taking them in order to achieve symptom relief. That is why lots of people who are head of organizations look to donations in order to get funding for disease cure research. Still, that usually is not even close to enough for adequate funding sadly.
So this is why getting a cure for many chronic illnesses is almost impossible. It is all about $$$$.
Sorry, but there is a lot of corruptness when it comes to health care, pharmaceuticals, hospitals etc.. They are definitely out to make a buck. One of the biggest problems is that the FDA and federal government will not put out the money for the researchers to look for cures. To find a cure for any given disease it costs Millions and millions of dollars in research. They would much rather put money into the development of drugs as they will gain a profit there. Especially on drugs that treat symptoms where you have to keep taking them in order to achieve symptom relief. That is why lots of people who are head of organizations look to donations in order to get funding for disease cure research. Still, that usually is not even close to enough for adequate funding sadly.
So this is why getting a cure for many chronic illnesses is almost impossible. It is all about $$$$.
Beach -
The answer to fewer transplants question is yes, those drugs will result in fewer liver. transplants. The numbers of transplants haven't gone down much yet, because these drugs have been on the market for only a few years. The natural history of HCV from infection to transplant is several decades, sometimes many decades
After initial infection with HCV about 85% of infected people become chronically infected and about 15% manage to defeat the virus at the outset and are either cured or their disease is at such a very low level that there is no functional difference from being cured.
Your mother is very likely one of these lucky 15%. They have antibodies to HCV but have little or no detectable virus in their blood, and their liver enzymes stay normal. They will not need the new HCV drugs nor are they likely to ever need a liver transplant.
Of the 85% who become chronically infected, if they are not treated and cured, many progress over a period of years to increasing levels of virus in the blood and liver, accompanied with rising levels of liver enzymes indicating liver damage. Ultimately when the liver becomes so damaged by the virus that cirrhosis and liver failure sets in, and a transplant is the only hope.
The new drugs can cure the virus before the liver damage gets too great, and thus the need for a transplant goes away. As the years go by we will be seeing fewer and liver transplants due to HCV infection. And the first data showing this effect is starting to come out. The need for transplants is starting drop. This trend will continue and accelerate as the use of the new drugs expands and more and more people are cured of the HCV: http://www.medscape.com/viewarticle/862015
I don't doubt that alcohol and certain drugs can also damage the liver. No one questions that excessive use of alcohol can wreck your liver. That's been known for centuries. And it makes sense that HCV and alcohol working together could make your liver sicker even faster. But there are plenty of clean-living non-drinkers who get HCV through blood transfusions and who progress to severe cirrhosis and liver failure. Alcohol can speed the process up, but HCV is perfectly capable of destroying your liver all by itself.
The Hep C "hoax" thing is typical conspiracy theory nonsense. The existence of Hep C has been well established for long time. No mainstream medical scientist or doctor doubts it. But there is no point with trying argue directly with the true believers. For them it has become a religion. One can only hope to limit the damage they do to innocent patients who fall prey to their story.
The same thing happened back in the 80s and 90s with HIV/AIDS. Peter Duesberg, a prominent professor at Berkeley, came up with a similar conspiracy theory that the HIV virus was harmless and didn't cause AIDS. He blamed the failure of the immune system in AIDS on excessive drug use (sound familiar?). His irresponsible theory cost countless lives. There were some prominent, outspoken parents who embraced his theories and publicly stopped anti-HIV therapy for their kids. And the kids eventually died of course. But being true believers, the parents could not bring themselves to admit they (and Peter Duesberg) were wrong and had cost their children their lives.
And the country of South Africa became heavily ravaged by AIDS when its then president, Thabo Mbeki, bought into the Duesberg theory and stopped government spending on HIV treatment and prevention measures. The result - millions of out of control cases of HIV/AIDS. Thousands and thousands have died of it. And today a full 10% of the entire population of South Africa is infected with HIV, and the government is struggling to get ahead of the epidemic.
We don't need another round of tragic nonsense like that, and this blogger guy is not helping.
The answer to fewer transplants question is yes, those drugs will result in fewer liver. transplants. The numbers of transplants haven't gone down much yet, because these drugs have been on the market for only a few years. The natural history of HCV from infection to transplant is several decades, sometimes many decades
After initial infection with HCV about 85% of infected people become chronically infected and about 15% manage to defeat the virus at the outset and are either cured or their disease is at such a very low level that there is no functional difference from being cured.
Your mother is very likely one of these lucky 15%. They have antibodies to HCV but have little or no detectable virus in their blood, and their liver enzymes stay normal. They will not need the new HCV drugs nor are they likely to ever need a liver transplant.
Of the 85% who become chronically infected, if they are not treated and cured, many progress over a period of years to increasing levels of virus in the blood and liver, accompanied with rising levels of liver enzymes indicating liver damage. Ultimately when the liver becomes so damaged by the virus that cirrhosis and liver failure sets in, and a transplant is the only hope.
The new drugs can cure the virus before the liver damage gets too great, and thus the need for a transplant goes away. As the years go by we will be seeing fewer and liver transplants due to HCV infection. And the first data showing this effect is starting to come out. The need for transplants is starting drop. This trend will continue and accelerate as the use of the new drugs expands and more and more people are cured of the HCV: http://www.medscape.com/viewarticle/862015
I don't doubt that alcohol and certain drugs can also damage the liver. No one questions that excessive use of alcohol can wreck your liver. That's been known for centuries. And it makes sense that HCV and alcohol working together could make your liver sicker even faster. But there are plenty of clean-living non-drinkers who get HCV through blood transfusions and who progress to severe cirrhosis and liver failure. Alcohol can speed the process up, but HCV is perfectly capable of destroying your liver all by itself.
The Hep C "hoax" thing is typical conspiracy theory nonsense. The existence of Hep C has been well established for long time. No mainstream medical scientist or doctor doubts it. But there is no point with trying argue directly with the true believers. For them it has become a religion. One can only hope to limit the damage they do to innocent patients who fall prey to their story.
The same thing happened back in the 80s and 90s with HIV/AIDS. Peter Duesberg, a prominent professor at Berkeley, came up with a similar conspiracy theory that the HIV virus was harmless and didn't cause AIDS. He blamed the failure of the immune system in AIDS on excessive drug use (sound familiar?). His irresponsible theory cost countless lives. There were some prominent, outspoken parents who embraced his theories and publicly stopped anti-HIV therapy for their kids. And the kids eventually died of course. But being true believers, the parents could not bring themselves to admit they (and Peter Duesberg) were wrong and had cost their children their lives.
And the country of South Africa became heavily ravaged by AIDS when its then president, Thabo Mbeki, bought into the Duesberg theory and stopped government spending on HIV treatment and prevention measures. The result - millions of out of control cases of HIV/AIDS. Thousands and thousands have died of it. And today a full 10% of the entire population of South Africa is infected with HIV, and the government is struggling to get ahead of the epidemic.
We don't need another round of tragic nonsense like that, and this blogger guy is not helping.
Scipio,
Hopefully that is the case that with the new drugs people will be healthier and see the need for fewer liver transplants. That should be the ultimate goal to aim for. It would be wonderful to see.
Medicine does have a religious quality to it, it seems to me. I'm familiar with the alternative theory for AIDS, such as with the cancer researcher Peter Deusberg. He was up in arms that the first cure for AIDS was a chemotherapy drug, AZT. AZT was prescribed to be taken for life. With chemo therapy drugs one wants to take them for a short of period of time as possible. I remember in my reading that he brought up the alternative idea that amyl nitrites, drugs used largely in the gay community, were responsible for the weakening ones immune system, leading to the development of many different diseases. I believe it is in America 31 diseases that are officially recognized as being AIDS related. Have TB and test positive for HIV =s diagnosis for AIDS. Have TB but test negative for HIV = diagnosis TB.
Peter isn't the only one that doesn't believe the official version of AIDS. I was surprised to see several people question the official version of the story.
The nobel Prize winner for discovering HIV, Luc Montagnier, in interviews says that he does not believe HIV causes AIDS. Particularly in Africa he feels poverty, starvation/ lack of quality food and poor drinking water lead to wide spread weakened immune systems.
It isn't surprising he would say that though i thought. Many people, particularly in Africa but in the west also can received a diagnosis of AIDs through the Bangui definition for AIDS. The Bangui definition is where HIV testing is not required to give a diagnosis of AIDS but instead vague symptoms such as diarrhea and weight loss can lead to the diagnosis. The story goes the Bangui definition was originally created due some areas of the world not being able to afford HIV testing.
Apparently I've seen western gay men mention if they are found to have the AIDS defining cancer of Kaposi sarcoma in the west an AIDS diagnosis can sometimes given without HIV testing.
A little on the Bangui definition can be seen here:
https://en.wikipedia.org/wiki/1985_World_Health_Organization_AIDS_surveillance_case_definition
Oh, sadly I have found all sides accuse the other of killing patients with their theories. It seems to be a sport played in medicine I've found in my readings. I believe with AIDS in Africa it has been theorized in the past that the continent should see a decline in population due to HIV infections. Instead the opposite has occurred. Hard to say which side is correct I've found.
Hopefully that is the case that with the new drugs people will be healthier and see the need for fewer liver transplants. That should be the ultimate goal to aim for. It would be wonderful to see.
Medicine does have a religious quality to it, it seems to me. I'm familiar with the alternative theory for AIDS, such as with the cancer researcher Peter Deusberg. He was up in arms that the first cure for AIDS was a chemotherapy drug, AZT. AZT was prescribed to be taken for life. With chemo therapy drugs one wants to take them for a short of period of time as possible. I remember in my reading that he brought up the alternative idea that amyl nitrites, drugs used largely in the gay community, were responsible for the weakening ones immune system, leading to the development of many different diseases. I believe it is in America 31 diseases that are officially recognized as being AIDS related. Have TB and test positive for HIV =s diagnosis for AIDS. Have TB but test negative for HIV = diagnosis TB.
Peter isn't the only one that doesn't believe the official version of AIDS. I was surprised to see several people question the official version of the story.
The nobel Prize winner for discovering HIV, Luc Montagnier, in interviews says that he does not believe HIV causes AIDS. Particularly in Africa he feels poverty, starvation/ lack of quality food and poor drinking water lead to wide spread weakened immune systems.
It isn't surprising he would say that though i thought. Many people, particularly in Africa but in the west also can received a diagnosis of AIDs through the Bangui definition for AIDS. The Bangui definition is where HIV testing is not required to give a diagnosis of AIDS but instead vague symptoms such as diarrhea and weight loss can lead to the diagnosis. The story goes the Bangui definition was originally created due some areas of the world not being able to afford HIV testing.
Apparently I've seen western gay men mention if they are found to have the AIDS defining cancer of Kaposi sarcoma in the west an AIDS diagnosis can sometimes given without HIV testing.
A little on the Bangui definition can be seen here:
https://en.wikipedia.org/wiki/1985_World_Health_Organization_AIDS_surveillance_case_definition
Oh, sadly I have found all sides accuse the other of killing patients with their theories. It seems to be a sport played in medicine I've found in my readings. I believe with AIDS in Africa it has been theorized in the past that the continent should see a decline in population due to HIV infections. Instead the opposite has occurred. Hard to say which side is correct I've found.
- Joined
- Jul 2, 2014
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If scientist don't find a cure in my lifetime maybe they'll be able to grow new intestines for me
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In my opinion and some scientists opinion's, It's already here. It will be a while before it's a widely held popular opinion, we just need more studies to make it obvious, and yes I'm talking about fecal transplants, In 5 years it could be available to everyone when pill form studies are completed, there is at least 1 study using a FMT pill for crohn's in the USA right now. FMT pills have already cured C. difficile infection which symptoms are very similar to IBD, which is chronic diarhea and sometimes chronic inflammation. A few IBD patients have dramatically improved from oral/enema/colonoscopic fecal transplants,but pill form could very likely be more effective and very easy to do, which makes studies faster and simpler. Read more below!!!
Wildbill - Fecal transplant is indeed one of the promising new treatments, which is why I included it back in post #15. But as you suggest, it needs more research before tis ready for prime time. The studies to date are small but interesting. I recall seeing one review that compiled about a 60% response rate in 38 CD patients. That rate would put it about on par with one of the better biologics.
One problem encountered is making the transplanted bacteria "stick." The body's natural inclination is to spontaneously revert back to its previous "normal" population of bacteria. But I'm guessing they will be able to make a lot of progress in solving or at least lessening that problem. In the end I suspect that fecal transplant will turn out to be better suited to treating UC than CD, and indeed that's where most of the effort appears to be currently focused.
It's certainly not yet a cure-all, but it's one more tool and one more reason to believe that management of IBD is going to get better and better.
One problem encountered is making the transplanted bacteria "stick." The body's natural inclination is to spontaneously revert back to its previous "normal" population of bacteria. But I'm guessing they will be able to make a lot of progress in solving or at least lessening that problem. In the end I suspect that fecal transplant will turn out to be better suited to treating UC than CD, and indeed that's where most of the effort appears to be currently focused.
It's certainly not yet a cure-all, but it's one more tool and one more reason to believe that management of IBD is going to get better and better.
I found something that did the trick for my Crohn's. I drink freshly brewed green tea (loose organic leaves) every single day, a whole teapot full. I have never had problems ever since! No pain, nothing, symptom free. Also, I have stopped taking Azathioprine as soon as I started drinking the tea and take no other medicines. The last blood test a year ago showed that my inflammation marker was at it's lowest ever. I feel great and even don't consider myself ill anymore. They want to do some imaging of my intestine next time (whenever that may be). I'm not in a hurry to see the Gastroenterologist. Since Crohn's Disease is an autoimmune illness, they suggest that sufferers are either Th1 or Th2 dominant. Green tea apparently stimulates the Th2 cells in the immune system. I think I must be Th1 dominant, therefore by drinking the tea, my immune system is more balanced and it does not attack the tissue in my small intestine anymore. Before, by taking Azathioprine, the immune system got suppressed and I still got flare ups sometimes whereas now I have my strong immune system back, but it's in a better balance. I am no doctor by any means, but I used to suffer badly from this disease like the rest of you. I told the doctor when he diagnosed me 8 years ago that I would fight this and this is what I've done after all these years of wrecking my bones with steroids etc. It might not work for everyone, but it might just improve the quality of life for one other Crohn's sufferer, which would be a great success. Once they have done some imaging of the intestine, I will let you know. By not taking medicines anymore, I have eliminated this terrible disease completely from my mind.
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- 71
Great news for you but i would say keep really on top of tests because I've read countless accounts of people thinking they have in under control with natural measures but really its just coincidence and it comes back anyway, this is a serious physical disease. Seen as there are so many varieties and causes seemingly of it you may well be rectifying some imbalance and cured yourself for all intents and purposes, but there's no harm in regular checkups!
Our oldest was diagnosed at 24, now 35 and symptom and drug free for 10 years now. (She was put into remission with steroids and believes she stayed in remission because she went on the SCD for about 5 years. She eats normally now).
Sadly, the diet didn't work for our youngest, 19. He also drinks A LOT of organic green tea..
Sadly, the diet didn't work for our youngest, 19. He also drinks A LOT of organic green tea..
