Hi. I just read about a drug approved for Chrohns disease and Ulcerative Colitis.
I dont know if it is something that anyones doctor will recommend for MC, but if he/she does, please, please make sure to read about the drug first.
To me it sounds like the side effects are much worse than the disease itself.
It can, and has lead to, tuberculosis, cancer, heart failure, etc...
The website for the drug lists all of the side effects and they are scary.
Upon doing a google search for Cimzia I came upon a legal site(a compliation of many different law firms and legal organizations called, Legal View) that is filing class action lawsuits for patients harmed by this drug, as well as many other drugs.
It sounds like the bad side effects are not all that uncommon and rare.
How could this drug be approved by FDA?
Tex, have you heard of this drug? Is it something they would think of prescribing for MC patients?
drug called Cimzia
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Andi,
I wasn't even aware that a new one had been released, but yes, Cimzia, (certolizumab pegol), is a member of a group of drugs know as Tumor Neucrosis Factor, (TNF), blockers. The group also includes Remicade, Humira, and Enbrel. Cimzia is the newest, and was released last spring. In September, the FDA notified medical professionals of a special risk of serious consequences related to fungal infections for patients taking any of these meds:
http://www.fda.gov/CDER/drug/InfoSheets ... ersHCP.htm
I can think of at least one member who is taking either Remicade or Humira, (despite our warnings on the board), and one or two others who were advised by their doctors to try one of these meds, but decided not to take it. The problem is that this group of meds is very effective at suppressing the immune system, so they are extremely effective against autoimmune issues. The problem is that for anyone not living in a bubble, they are far too risky to be worth considering, unless someone has arrived at a point where they are willing to literally risk their life, for, (hopefully), a few years of relief from pain and misery.
Actually, IBD patients who have been prescribed one or more of these meds are just the tip of the iceberg - it's arthritis patients who are the real target for them, and, in fact, that is the reason why the member I mentioned above is taking it. It did, of course, promptly resolve her MC issues, (and virtually all her other autoimmune issues).
In view of all the lawsuits waiting in the wings, these meds may have a limited future. I agree with you that taking one of these meds is "a catastrophe waiting to happen". I have arthritis, gluten sensitivity, and a few other autoimmune issues, but I would rather deal with the autoimmune issues by diet, and/or spend most of my time in the bathroom, if necessary, than to "take the easy way out", by taking one of those meds, and then spend my time wondering how much time I have left, before some infection due to the med, kills me. Still, I can see how the temptation to use one of these meds could be overpowering, for someone who has run out of hope, and can no longer cope with their situation. Everyone has to choose their own path in life, and as long as they have carefully weighted the pros and cons, I can't with a clear conscience, condemn their choices. It's their life.
The FDA has released other official warnings about this group of drugs, such as this one, released earlier, warning of the increased risk of lymphoma and other cancers in children and young adults:
http://www.fda.gov/CDER/drug/early_comm ... ockers.htm
Thanks for posting that information.
Tex
I wasn't even aware that a new one had been released, but yes, Cimzia, (certolizumab pegol), is a member of a group of drugs know as Tumor Neucrosis Factor, (TNF), blockers. The group also includes Remicade, Humira, and Enbrel. Cimzia is the newest, and was released last spring. In September, the FDA notified medical professionals of a special risk of serious consequences related to fungal infections for patients taking any of these meds:
http://www.fda.gov/CDER/drug/InfoSheets ... ersHCP.htm
I can think of at least one member who is taking either Remicade or Humira, (despite our warnings on the board), and one or two others who were advised by their doctors to try one of these meds, but decided not to take it. The problem is that this group of meds is very effective at suppressing the immune system, so they are extremely effective against autoimmune issues. The problem is that for anyone not living in a bubble, they are far too risky to be worth considering, unless someone has arrived at a point where they are willing to literally risk their life, for, (hopefully), a few years of relief from pain and misery.
Actually, IBD patients who have been prescribed one or more of these meds are just the tip of the iceberg - it's arthritis patients who are the real target for them, and, in fact, that is the reason why the member I mentioned above is taking it. It did, of course, promptly resolve her MC issues, (and virtually all her other autoimmune issues).
In view of all the lawsuits waiting in the wings, these meds may have a limited future. I agree with you that taking one of these meds is "a catastrophe waiting to happen". I have arthritis, gluten sensitivity, and a few other autoimmune issues, but I would rather deal with the autoimmune issues by diet, and/or spend most of my time in the bathroom, if necessary, than to "take the easy way out", by taking one of those meds, and then spend my time wondering how much time I have left, before some infection due to the med, kills me. Still, I can see how the temptation to use one of these meds could be overpowering, for someone who has run out of hope, and can no longer cope with their situation. Everyone has to choose their own path in life, and as long as they have carefully weighted the pros and cons, I can't with a clear conscience, condemn their choices. It's their life.
The FDA has released other official warnings about this group of drugs, such as this one, released earlier, warning of the increased risk of lymphoma and other cancers in children and young adults:
http://www.fda.gov/CDER/drug/early_comm ... ockers.htm
Thanks for posting that information.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
cimzia updates?
This was one of the few threads on the forum that mentioned cimzia so I'm checking in to see if anyone has any thoughts now that it has been around for a few years. My GI has diagnosed me with Crohn's or something like Crohn's in addition to the MC(LC). She has prescribed cimzia and feels that it's safe. She said their practice writes about one new rx for cimzia a day. She actually said that she has more concern with the Entocort than she does with cimzia. I'm hesitant to take it, partially because I suspect an underlying lyme infection may be a root cause for all my autoimmune issues. I hope to have some answers about the lyme in a couple weeks but if the specialist doesn't think lyme is a concern I will be faced with the decision to take cimzia or not.
As Tex mentioned, one must always weight the benefits vs the risks of all things, including medicine. What perecentage of people on cimzia develop cancer or one of those scary side effects? What percentage of IBD patients develop cancer or other serious side effect (colon removal, etc,) if the disease is left untreated? These are rhetorical questions but are meant to make us all remember that there are consequences on both sides of the coin.
Any updated info on the effectiveness or side effects of cimzia are greatly appreciated!
As Tex mentioned, one must always weight the benefits vs the risks of all things, including medicine. What perecentage of people on cimzia develop cancer or one of those scary side effects? What percentage of IBD patients develop cancer or other serious side effect (colon removal, etc,) if the disease is left untreated? These are rhetorical questions but are meant to make us all remember that there are consequences on both sides of the coin.
Any updated info on the effectiveness or side effects of cimzia are greatly appreciated!
My best friend was getting Remicade infusions monthly (or every 2 months) for Crohn's disease. I think she followed this treatment for 5 years, until she started developing severe joint pain. Now she has drug induced Lupus from the Remicade and can no longer take it. It breaks my heart to see her worse off than before. Despite my contant nagging and sending research articles, and despite the efforts from a friend who is a naturopath, she has never attempted dietary intervention for longer than a couple of weeks. Her stool cultures occasionally come up positive for C.Diff, so to her, that is her answer, and diet has nothing to do with it. She is a mom of 4 without a huge budget for food, so I can understand the hesitation of using diet just for "supportive" relief. But I wish she was a stronger advocate for her own health. Her kids need her long-term.
Marie,
I'm with Zizzle on this one — I don't have a very high opinion of the anti-TNF drugs, especially for relatively young individuals, because the long-term risks are not to be taken lightly.
As you can see from the statistics, cancer is not a major risk, (at least it's not significant when compared with the risk of major damage due to the disease itself). Are you confident that her diagnosis is correct? Did she diagnose it herself, or did a pathologist diagnose Crohn's disease after studying slides made from biopsy samples from both your colon and small intestine? Without a pathologist's diagnosis, I would be very skeptical of the diagnosis, unless your colon showed major, gross damage during the colonoscopy exam, (which apparently wasn't the case). It might be beneficial to at least get another pathologist to offer a second opinion on your biopsy slides, because Crohn's disease is not something that can be taken lightly (as you are well aware), so the diagnosis needs to be absolutely accurate.
Tex
I'm with Zizzle on this one — I don't have a very high opinion of the anti-TNF drugs, especially for relatively young individuals, because the long-term risks are not to be taken lightly.
It appears that your doctor doesn't understand one or both of these drugs very well, because IMO that is an irresponsible statement. IMO, none of the anti-TNF drugs are anywhere near as safe to use as budesonide (Entocort EC). The other corticosteroids are much more dangerous for long-term use, but budesonide is a horse of a different color (as they say). If I wanted to consider taking an immune system suppressant, I would ask about a prescription for Imuran (Azathioprine). No immune system suppressant is without health risks, but at least Imuran has been around long enough to have established a substantial track record. It takes quite a few years to establish a database of case studies following the approval of a new drug, and the true scope of the dangers of taking Cimza will not be known for a few more years, at least.Marie wrote:She actually said that she has more concern with the Entocort than she does with cimzia.
Surgery is commonly required with Crohn's disease, with or without treatment. The actual statistical risk depends on the location in the intestinal tract of the Crohn's activity, but basically, here is what one study showed:What perecentage of people on cimzia develop cancer or one of those scary side effects? What percentage of IBD patients develop cancer or other serious side effect (colon removal, etc,) if the disease is left untreated?
http://www.medscape.com/viewarticle/771379With a median follow-up of 12 years, the cumulative likelihood of undergoing major abdominal surgery was 38% at five years, 48% at 10 years, and 58% at 20 years. Sixty-five patients had at least two surgeries, and 32 patients had at least three surgeries.
About a third of the patients had disease limited to the colon, another third had ileocolonic disease, and just under a third had disease in the small bowel only. Seven patients (2.3%) had gastroduodenal disease.
The most common indications for surgery were medical therapy failure (25%), obstruction (24%), perforation (10%) and abdominal abscess (10%).
Multivariate analysis showed that patients with ileocolonic disease were more than three times as likely as those with colon-only disease to require surgery. Small bowel disease increased risk 3.4-fold, while upper gastrointestinal disease quadrupled risk. Patients with penetrating disease behavior were 2.7 times as likely to require surgery. Other factors associated with an increased likelihood of surgery included current cigarette smoking (HR 1.7), male gender (HR 1.6), and early corticosteroid use (HR 1.6).
As you can see from the statistics, cancer is not a major risk, (at least it's not significant when compared with the risk of major damage due to the disease itself). Are you confident that her diagnosis is correct? Did she diagnose it herself, or did a pathologist diagnose Crohn's disease after studying slides made from biopsy samples from both your colon and small intestine? Without a pathologist's diagnosis, I would be very skeptical of the diagnosis, unless your colon showed major, gross damage during the colonoscopy exam, (which apparently wasn't the case). It might be beneficial to at least get another pathologist to offer a second opinion on your biopsy slides, because Crohn's disease is not something that can be taken lightly (as you are well aware), so the diagnosis needs to be absolutely accurate.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks all for the responses. I didn't mean to hijack this thread.
As for the definitive Crohn's diagnosis, the GI (currently seeing a GI at Univ of FL Shands in Gainesville) said there are lots of genetic mutations involved in IBD and what we currently understand to be four or five diseases will likely actually end up being 80 or so diseases as we learn more about the genes and how different mutations are displayed phenotypically. Her thought is that even if the lab/procedure results don't 100% conclusively identify the condition as "Crohn's" it is most certainly one of those variations of IBD that has yet to be differentiated and named. I don't have the results in front of me, but there was some mention that an intestinal wall was thickened which would not usually be the case in Crohn's. The Shands GI did the endoscopy and MRE but my colonoscopy was done by my local GI. The Shands GI mentioned being able to give more info if she had done the colonoscopy. We've since told her that we are fine with her performing a second procedure but she says there is no need since she can already tell us what it's going to say.
I guess I'm at a loss as to what to do next if I don't try the anti-TNF meds. Entocort provided some relief but I seem to be experiencing side effects/allergic reactions to it. I get shortness of breath/difficulty breathing (it even wakes me up at night) and have developed rashes on my feet and ankles. Tough to tell if the headaches, back and joint pain are different/worse on the Entocort than at any other time. I've tried many diet regimens and done all sorts of allergy testing, including enterolab. A week of the Specific Carbohydrate Diet landed me in the emergency room in the recent past. I suppose diet alone could heal me but it seems like it would take years. I just don't have that in me as I am expected to care for our two young children. I guess I have a tough time seeing how diet can solve all the other non-digestive autoimmune issues like hashimoto's, persistent UTIs, etc. I tend to think that my food allergies/intolerances are a secondary result of an overactive immune system and not necessarily the cause.
Thanks again to all those who viewed/responded.
As for the definitive Crohn's diagnosis, the GI (currently seeing a GI at Univ of FL Shands in Gainesville) said there are lots of genetic mutations involved in IBD and what we currently understand to be four or five diseases will likely actually end up being 80 or so diseases as we learn more about the genes and how different mutations are displayed phenotypically. Her thought is that even if the lab/procedure results don't 100% conclusively identify the condition as "Crohn's" it is most certainly one of those variations of IBD that has yet to be differentiated and named. I don't have the results in front of me, but there was some mention that an intestinal wall was thickened which would not usually be the case in Crohn's. The Shands GI did the endoscopy and MRE but my colonoscopy was done by my local GI. The Shands GI mentioned being able to give more info if she had done the colonoscopy. We've since told her that we are fine with her performing a second procedure but she says there is no need since she can already tell us what it's going to say.
I guess I'm at a loss as to what to do next if I don't try the anti-TNF meds. Entocort provided some relief but I seem to be experiencing side effects/allergic reactions to it. I get shortness of breath/difficulty breathing (it even wakes me up at night) and have developed rashes on my feet and ankles. Tough to tell if the headaches, back and joint pain are different/worse on the Entocort than at any other time. I've tried many diet regimens and done all sorts of allergy testing, including enterolab. A week of the Specific Carbohydrate Diet landed me in the emergency room in the recent past. I suppose diet alone could heal me but it seems like it would take years. I just don't have that in me as I am expected to care for our two young children. I guess I have a tough time seeing how diet can solve all the other non-digestive autoimmune issues like hashimoto's, persistent UTIs, etc. I tend to think that my food allergies/intolerances are a secondary result of an overactive immune system and not necessarily the cause.
Thanks again to all those who viewed/responded.
So you're saying that your diagnosis wasn't made by a pathologist?
I'm guessing you haven't read my book. If you had read my book you would realize that your immune system is not overactive — it's doing what it was designed to do. It seems overactive simply because you are feeding it a continuous dose of foods that promote inflammation and autoimmune reactions, so it never has a chance to perform normally — instead, it's under constant attack and it has no choice but to fight back.
You have a choice of changing your diet so that your immune system performs normally, or you can choose to continue to abuse your digestive system and your immune system, and use an immune system suppressant so that your immune system is effectively disabled. Once it is disabled, you are at an increased risk of infection, (that means more UTIs), plus a higher risk of cancer, since your immune system will lose most of it's ability to destroy mutated cells before they can develop into cancer.
Sure, controlling our health by diet is a lot more work, and it takes more time and effort than just popping a pill now and then, but diet is the only treatment that is free of serious side effects somewhere down the road. And a combination of diet and the proper medications can also be utilized to get your life back. But failing to make diet changes when we have food sensitivities is equivalent to turning our back on our body, and ignoring it's needs. That almost always leads to long-term regrets, later in life. Isn't your long-term health worth the best care that you can provide for your body?
Tex
Diet can't "solve" Hashimoto's, once it develops, but it might have prevented Hashimoto's from developing in the first place, and after it develops, diet changes can prevent it from causing other autoimmune diseases. If you choose to use a medical solution without making any diet changes, your greatest risk is the eventual development of additional autoimmune diseases. Diet certainly can prevent persistent UTIs. You should be taking D-mannose to prevent UTIs, rather than taking antibiotics after they develop.Marie wrote:I guess I have a tough time seeing how diet can solve all the other non-digestive autoimmune issues like hashimoto's, persistent UTIs, etc. I tend to think that my food allergies/intolerances are a secondary result of an overactive immune system and not necessarily the cause.
I'm guessing you haven't read my book. If you had read my book you would realize that your immune system is not overactive — it's doing what it was designed to do. It seems overactive simply because you are feeding it a continuous dose of foods that promote inflammation and autoimmune reactions, so it never has a chance to perform normally — instead, it's under constant attack and it has no choice but to fight back.
You have a choice of changing your diet so that your immune system performs normally, or you can choose to continue to abuse your digestive system and your immune system, and use an immune system suppressant so that your immune system is effectively disabled. Once it is disabled, you are at an increased risk of infection, (that means more UTIs), plus a higher risk of cancer, since your immune system will lose most of it's ability to destroy mutated cells before they can develop into cancer.
Sure, controlling our health by diet is a lot more work, and it takes more time and effort than just popping a pill now and then, but diet is the only treatment that is free of serious side effects somewhere down the road. And a combination of diet and the proper medications can also be utilized to get your life back. But failing to make diet changes when we have food sensitivities is equivalent to turning our back on our body, and ignoring it's needs. That almost always leads to long-term regrets, later in life. Isn't your long-term health worth the best care that you can provide for your body?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Joefnh
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Well Tex, I guess I'm the one "living in the bubble"....while its been fun getting my gut sliced open twice in the last 15 months due to Crohns, I am now looking at a spinal degenerative disease that may require fusion, for which the only offered treatments are steroids which can cause osteoporosis which I now have, OR a TNF med......for me the risks versus benefits are QUITE clear...I am sick and tired of being on the operating table and I don't want to end up paralyzed!! I am quite fond of being able to walk.
Despite "the many warnings"....I choose to be able to keep my job and to be able to walk.
Everything can seem quite clear, proper and clean when you are not the one facing the consequences and the decision.
Despite "the many warnings"....I choose to be able to keep my job and to be able to walk.
Everything can seem quite clear, proper and clean when you are not the one facing the consequences and the decision.
Joe
Joe,
Sorry, I didn't mean to offend you, but I believe you misread my post. The warnings were about taking immune system suppressants without making any diet changes. You have made the necessary diet changes (at least I was under the impression that you have), so that should minimize your risk of developing additional autoimmune issues, or any other diet-related risks. Marie, by contrast, is considering taking drugs without changing her diet. That's a totally different ball game, IMO.
Maybe you missed this:
Tex
Sorry, I didn't mean to offend you, but I believe you misread my post. The warnings were about taking immune system suppressants without making any diet changes. You have made the necessary diet changes (at least I was under the impression that you have), so that should minimize your risk of developing additional autoimmune issues, or any other diet-related risks. Marie, by contrast, is considering taking drugs without changing her diet. That's a totally different ball game, IMO.
Maybe you missed this:
Again, sorry — I thought that addressed your situation.Tex wrote:And a combination of diet and the proper medications can also be utilized to get your life back. But failing to make diet changes when we have food sensitivities is equivalent to turning our back on our body, and ignoring it's needs.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
No, I have not read your book. Today was the first day I logged on and saw that it had been published. Congratulations. I hope that it's able to help lots of people.
I would love to get a handle on my situation with diet. I just don't know how that's supposed to happen. So far, no diet, no matter how restricted or limited, has slightly affected the D. If I could eat foods and keep a journal to determine what caused a flare that would be one thing.
Tex, do you theorize that diet alone can solve 100% of autoimmune diseases? Is there a point for some people where a medical intervention of some kind is required?
I think the discussion for all of us is about quality of life. A preliminary study out of the Celiac Center at the Beth Israel Deaconess Medical Center in Boston found that burden of just a gluten free diet is comparable to type 1 diabetes (insulin injections) and kidney disease (required dialysis) treatments. I don't need to preach to you or anyone else on this forum as you are all very familiar with the constraints (and benefits) of a restricted diet lifestyle. There is a point (and this point is different for every individual) where the stress and anxieties placed on a person trying to follow diet far outweigh any benefits received (cook 24 hour batches of homemade yogurt or chicken bone broth or subsisting on nothing but lobster tails and carrots for days on end while dealing with sick kids, moving into a new house, trying to keep on top of laundry, cleaning, cooking, getting kids to school and to dance and to playdates and remembering which of the 57 pills and supplements are supposed to be taken when and with or without food or two hours away from other meds while stressing about money since food and medical bills far surpass how much comes in).
{"diet is the only treatment that is free of serious side effects"} - I personally believe that a severely restricted diet can have physical (as well as social, mental, etc.) side effects just as any medication. Malnutrition can prevent your body from functioning properly just as any immune suppressant. If I'm only absorbing 10% of the nutrients I eat, reducing the amount and variety of foods eaten is going to make things worse - unless of course the diet results in reduced D and increased absorption in the long run. As of yet, I have not seen any of those improvements. But I have experienced dizziness, fatigue and other health issues to a greater extent while trying various elimination/restricted diets. Several of which have ended with me in the hospital.
As far as I can tell, data seems to indicate an increased cancer risk in those age 18 and younger. I am in my 30s. Even for those 18 and younger the rate of cancer tends to increase approximately two fold from control populations. So instead of one person out of 3000, two people out of 3000 get it. A two-fold increase sounds scary until you realize that it's a very small risk to begin with. I admit to not being intimately familiar with this research. it is worth mentioning that the above study was for RA and patients with RA that do not use TNF blockers are still at at a two fold risk for cancer because of the disease itself.
So these medicines, like all others, carry some risk. It's a potential that "might be." Right now, my life is not a "might be" difficult. It is. My son is almost a year old and I can't say that I've really enjoyed more than a few moments with him in that time. So when he is grown, will my memories be of playing and laughing or will they be of recipes and food journals?
I totally get the perceived long term benefits of handling this with diet alone. I would certainly prefer to not take any medications at all. And I might be at that point someday. Your viewpoint is that diet heals all. Most doctors believe diet has nothing to do with it. I would guess that, like politics, the majority doesn't exactly line up with one extreme or the other, but instead falls in a moderate category where we feel there is a time and place for diet and medications.
I don't want this to sound combative, although it might. My mindset has been in "fight" mode for some time now - be it against disease or unresponsive doctors or whatever. Tex and others on this forum have been a huge help with knowledge and support. For that I am thankful. That is why I find myself posting larger autoimmune disease issues on a colitis-specific forum. The info and help found here are significant.
I would love to get a handle on my situation with diet. I just don't know how that's supposed to happen. So far, no diet, no matter how restricted or limited, has slightly affected the D. If I could eat foods and keep a journal to determine what caused a flare that would be one thing.
Tex, do you theorize that diet alone can solve 100% of autoimmune diseases? Is there a point for some people where a medical intervention of some kind is required?
I think the discussion for all of us is about quality of life. A preliminary study out of the Celiac Center at the Beth Israel Deaconess Medical Center in Boston found that burden of just a gluten free diet is comparable to type 1 diabetes (insulin injections) and kidney disease (required dialysis) treatments. I don't need to preach to you or anyone else on this forum as you are all very familiar with the constraints (and benefits) of a restricted diet lifestyle. There is a point (and this point is different for every individual) where the stress and anxieties placed on a person trying to follow diet far outweigh any benefits received (cook 24 hour batches of homemade yogurt or chicken bone broth or subsisting on nothing but lobster tails and carrots for days on end while dealing with sick kids, moving into a new house, trying to keep on top of laundry, cleaning, cooking, getting kids to school and to dance and to playdates and remembering which of the 57 pills and supplements are supposed to be taken when and with or without food or two hours away from other meds while stressing about money since food and medical bills far surpass how much comes in).
{"diet is the only treatment that is free of serious side effects"} - I personally believe that a severely restricted diet can have physical (as well as social, mental, etc.) side effects just as any medication. Malnutrition can prevent your body from functioning properly just as any immune suppressant. If I'm only absorbing 10% of the nutrients I eat, reducing the amount and variety of foods eaten is going to make things worse - unless of course the diet results in reduced D and increased absorption in the long run. As of yet, I have not seen any of those improvements. But I have experienced dizziness, fatigue and other health issues to a greater extent while trying various elimination/restricted diets. Several of which have ended with me in the hospital.
As far as I can tell, data seems to indicate an increased cancer risk in those age 18 and younger. I am in my 30s. Even for those 18 and younger the rate of cancer tends to increase approximately two fold from control populations. So instead of one person out of 3000, two people out of 3000 get it. A two-fold increase sounds scary until you realize that it's a very small risk to begin with. I admit to not being intimately familiar with this research. it is worth mentioning that the above study was for RA and patients with RA that do not use TNF blockers are still at at a two fold risk for cancer because of the disease itself.
So these medicines, like all others, carry some risk. It's a potential that "might be." Right now, my life is not a "might be" difficult. It is. My son is almost a year old and I can't say that I've really enjoyed more than a few moments with him in that time. So when he is grown, will my memories be of playing and laughing or will they be of recipes and food journals?
I totally get the perceived long term benefits of handling this with diet alone. I would certainly prefer to not take any medications at all. And I might be at that point someday. Your viewpoint is that diet heals all. Most doctors believe diet has nothing to do with it. I would guess that, like politics, the majority doesn't exactly line up with one extreme or the other, but instead falls in a moderate category where we feel there is a time and place for diet and medications.
I don't want this to sound combative, although it might. My mindset has been in "fight" mode for some time now - be it against disease or unresponsive doctors or whatever. Tex and others on this forum have been a huge help with knowledge and support. For that I am thankful. That is why I find myself posting larger autoimmune disease issues on a colitis-specific forum. The info and help found here are significant.
Tex, I missed that sentence about using diet and medications. I apologize if I categorized you as 100% diet and anti-med. I think we all agree on this balance.
Joe, sorry to hear about your struggles.
I'v been gluten free for a few years and for several months have been dairy, corn, soy free as well. Recently I introduced dairy back (in forms that are allowed under the SCD). My diet has been based on various allergy testing, including enterolab. To say that I want to take medications without any change to diet is a gross misunderstanding.
Joe, sorry to hear about your struggles.
I'v been gluten free for a few years and for several months have been dairy, corn, soy free as well. Recently I introduced dairy back (in forms that are allowed under the SCD). My diet has been based on various allergy testing, including enterolab. To say that I want to take medications without any change to diet is a gross misunderstanding.
Hi Marie and Andi,
The anti-TNF drugs (you have sited one here, which is Cimzia) would not be prescribed for MC, except in quite extreme circumstances. If you were to research all of the anti-TNF drugs, you would find the same list of potential side effects with all of them. To some extent this list is a tool of the legal profession, and includes every reported issue that has ever been reported while a person was taking one of these drugs. That said, the anti-TNF's are certainly not without problems.
However, do also consider that, Crohn’s Disease is a disease that is potentiality life threatening.
IF a person has been given the diagnosis of Crohn’s Disease – it would be advisable to know the basis of the diagnosis, (the patient should have access to all the tests that were used to arrive at this diagnosis). A person who receives a diagnosis of Crohn’s Disease should also be given the opportunity to understand the disease, all its ramifications, as well as all possible treatments.
I recommend going to this web-site:
http://www.mayoclinic.com/health/crohns-disease/DS00104
Copy it off ( yes … all 11 pages) and the read through carefully. Then take all this information along the next time you visit this Dr. Have any and all questions written in the margins. Get this Dr. to discuss all this information --- get all questions answered. If questions can not be answered satisfactorily, a second opinion is probably in order. In fact, a second opinion would be highly recommended.
See Page 8 of the above web-site titled "Treatments and Drugs". The drug are listed there in Tier order. It is most customary to start treaments in Tier order starting with the lower tier drugs first. But that would not always be the case --- depending upon??? IN the case of the Dr who recommended moving to level 4 drug tier (the anti-TNF's) used in treatment of this condition – ask her why she has chosen this route or you. There may be a good reason that no one on this chat site can reasonably be expected to understand with the information contributed here??
The final say in any treatment plan that is accepted is always with the patient’s agreement. With Crohn’s Disease, it important to realize that a segment of diseased bowel that is lost to the effects of Crohn’s disease --- is gone forever --- so delaying treatment, or starting treatment after damage is done is to no avail … the viability of the tissues damaged, will not be regained. Therefore, the decision of how to best go about manging and treating Crohn’s Disease deserves full knowledge of any/all the information available right from the get-go.
There are some new medications in the pipe line that may have implications for Crohn’s Disease. These are vedolizumab, tocilizumab, and tofacitinib. They are a few of the new wave of anti-inflammatory drugs that could substantially change the use of anti-TNFs in Rhumatoid Artheritis as well as Crohn’s Disease. Ask the Dr. what she knows about where these drugs are as far as FDA approval at this point.
Good Luck,
Crohn's is a real toughie!!!
Gayle
The anti-TNF drugs (you have sited one here, which is Cimzia) would not be prescribed for MC, except in quite extreme circumstances. If you were to research all of the anti-TNF drugs, you would find the same list of potential side effects with all of them. To some extent this list is a tool of the legal profession, and includes every reported issue that has ever been reported while a person was taking one of these drugs. That said, the anti-TNF's are certainly not without problems.
However, do also consider that, Crohn’s Disease is a disease that is potentiality life threatening.
IF a person has been given the diagnosis of Crohn’s Disease – it would be advisable to know the basis of the diagnosis, (the patient should have access to all the tests that were used to arrive at this diagnosis). A person who receives a diagnosis of Crohn’s Disease should also be given the opportunity to understand the disease, all its ramifications, as well as all possible treatments.
I recommend going to this web-site:
http://www.mayoclinic.com/health/crohns-disease/DS00104
Copy it off ( yes … all 11 pages) and the read through carefully. Then take all this information along the next time you visit this Dr. Have any and all questions written in the margins. Get this Dr. to discuss all this information --- get all questions answered. If questions can not be answered satisfactorily, a second opinion is probably in order. In fact, a second opinion would be highly recommended.
See Page 8 of the above web-site titled "Treatments and Drugs". The drug are listed there in Tier order. It is most customary to start treaments in Tier order starting with the lower tier drugs first. But that would not always be the case --- depending upon??? IN the case of the Dr who recommended moving to level 4 drug tier (the anti-TNF's) used in treatment of this condition – ask her why she has chosen this route or you. There may be a good reason that no one on this chat site can reasonably be expected to understand with the information contributed here??
The final say in any treatment plan that is accepted is always with the patient’s agreement. With Crohn’s Disease, it important to realize that a segment of diseased bowel that is lost to the effects of Crohn’s disease --- is gone forever --- so delaying treatment, or starting treatment after damage is done is to no avail … the viability of the tissues damaged, will not be regained. Therefore, the decision of how to best go about manging and treating Crohn’s Disease deserves full knowledge of any/all the information available right from the get-go.
There are some new medications in the pipe line that may have implications for Crohn’s Disease. These are vedolizumab, tocilizumab, and tofacitinib. They are a few of the new wave of anti-inflammatory drugs that could substantially change the use of anti-TNFs in Rhumatoid Artheritis as well as Crohn’s Disease. Ask the Dr. what she knows about where these drugs are as far as FDA approval at this point.
Good Luck,
Crohn's is a real toughie!!!
Gayle
Marie,
I agree with what Gayle recommended. First you need to determine what's going on with that alleged Crohn's diagnosis. Is it legitimate or not, because it may make all the difference in the world on the type of treatment/s that you will need to control your issues. And, as Gayle mentioned, why on earth would your doctor recommend starting with the ultimate treatment, when she isn't even sure about the status of your Crohn's diagnosis? This all sounds very suspicious, but there's always a chance that she might know what she's doing, even though she's dong a pretty good job of disguising her competence. LOL.
No, I'm not naive enough to think that diet will bring remission 100% of the time. There are always exceptions to every rule, and treating MC by diet also has to abide by that rule. There will always be people who will be exposed to cross-contamination problems that they are unaware of, that prevents them from achieving remission (it's much more common than almost everyone realizes), and there will always be people who are unable to discover all their food sensitivities. There will always be people whose MC is triggered by something in addition to food sensitivities, that they are unaware of (such as a medication or a hormone treatment that they are unwilling to give up). And there are a few people who have so many food sensitivities that they simply cannot eliminate them all. A restricted diet should never cause malnutrition though, unless the patient cannot tolerate any meat of any kind, because meat contains all the amino acids needed to not only sustain life, but to maintain excellent health. Avoiding certain foods does not mean that we have to eat like a bird. If we cut some foods out, then we have to eat more of the remaining foods, in order to get our necessary nutrition and energy. Here is verified proof of that, if you are interested:
http://www.biblelife.org/stefansson2.htm
I hear what you are saying, because this is almost never as easy as it seems that it should be, and few people are willing to give up all their favorite foods without a fight. The point is, if EnteroLab tests showed that you are producing antibodies to certain foods, then there is no question that your digestive system is sensitive to them, whether you feel that you react to them or not. Treating this disease sucks, but not as bad as its effects on our life if we don't treat it.
The bottom line is, if you feel that you have honestly eliminated all your food sensitivities (at the same time) for a sufficiently long period of time (without any interruptions), and you still don't see any significant improvement, then yes, it's probably time to try a medication. But not a last-resort drug such as an anti-TNF drug, and remember that a drug may not give you control unless you continue to follow a diet that avoids all your food sensitivities. There are no magic pills. Some people are able to eat what they want, as long as they take a drug, but most of us still have to continue to avoid our food sensitivities, or the drug will simply not be up to the job, because the food sensitivities will generate new inflammation faster than the drug can suppress it. And even if a drug suppresses our symptoms, as long as we continue to eat foods to which we are sensitive, we will continue to generate new inflammation in our intestines, regardless of whether the drug provides remisson.
You're still young, so most of your life is still ahead of you. You need a treatment plan that will maximize your long-term health, while minimizing it's impact on your lifestyle. It's not an easy decision, but it's an extremely important one, and only you can decide exactly what all the details of that plan should be.
Tex
I agree with what Gayle recommended. First you need to determine what's going on with that alleged Crohn's diagnosis. Is it legitimate or not, because it may make all the difference in the world on the type of treatment/s that you will need to control your issues. And, as Gayle mentioned, why on earth would your doctor recommend starting with the ultimate treatment, when she isn't even sure about the status of your Crohn's diagnosis? This all sounds very suspicious, but there's always a chance that she might know what she's doing, even though she's dong a pretty good job of disguising her competence. LOL.
No, I'm not naive enough to think that diet will bring remission 100% of the time. There are always exceptions to every rule, and treating MC by diet also has to abide by that rule. There will always be people who will be exposed to cross-contamination problems that they are unaware of, that prevents them from achieving remission (it's much more common than almost everyone realizes), and there will always be people who are unable to discover all their food sensitivities. There will always be people whose MC is triggered by something in addition to food sensitivities, that they are unaware of (such as a medication or a hormone treatment that they are unwilling to give up). And there are a few people who have so many food sensitivities that they simply cannot eliminate them all. A restricted diet should never cause malnutrition though, unless the patient cannot tolerate any meat of any kind, because meat contains all the amino acids needed to not only sustain life, but to maintain excellent health. Avoiding certain foods does not mean that we have to eat like a bird. If we cut some foods out, then we have to eat more of the remaining foods, in order to get our necessary nutrition and energy. Here is verified proof of that, if you are interested:
http://www.biblelife.org/stefansson2.htm
I hear what you are saying, because this is almost never as easy as it seems that it should be, and few people are willing to give up all their favorite foods without a fight. The point is, if EnteroLab tests showed that you are producing antibodies to certain foods, then there is no question that your digestive system is sensitive to them, whether you feel that you react to them or not. Treating this disease sucks, but not as bad as its effects on our life if we don't treat it.
The bottom line is, if you feel that you have honestly eliminated all your food sensitivities (at the same time) for a sufficiently long period of time (without any interruptions), and you still don't see any significant improvement, then yes, it's probably time to try a medication. But not a last-resort drug such as an anti-TNF drug, and remember that a drug may not give you control unless you continue to follow a diet that avoids all your food sensitivities. There are no magic pills. Some people are able to eat what they want, as long as they take a drug, but most of us still have to continue to avoid our food sensitivities, or the drug will simply not be up to the job, because the food sensitivities will generate new inflammation faster than the drug can suppress it. And even if a drug suppresses our symptoms, as long as we continue to eat foods to which we are sensitive, we will continue to generate new inflammation in our intestines, regardless of whether the drug provides remisson.
You're still young, so most of your life is still ahead of you. You need a treatment plan that will maximize your long-term health, while minimizing it's impact on your lifestyle. It's not an easy decision, but it's an extremely important one, and only you can decide exactly what all the details of that plan should be.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.