How I weaned myself off of Remicade

Well it’s been like years (not really but seems like a long time) since I’ve posted on my blog. I’m such a slacker!!! Life has been super busy with the holidays. Well lets just dive into the nitty gritty, shall we? Oh and please read this really long post. My sweat and blood went into this!! Thanks!

What is Remicade you ask? It is an immunosuppressant drug. Remicade is used to treat pain and inflammation usually associated with Rheumatoid Arthritis, Crohn’s Disease, Colitis, and other autoimmune diseases. It is given intravenously and takes about two hours to infuse.

Remicade has a whole list of side effects and people that are prone to infections are cautioned not to take this drug. Some of the side effects include: coughing, rash, sinus infections, sore throat, and stomach pain. More serious side effects include: infection, cancer, Hepatitis B virus, TB, blood disorder, nervous system disorder, and lupus-like syndrome. Lets not forget the side effects they look for while you have your infusion: breathing difficulties, chest pain, changes in blood pressure, swelling of the hands or face, chills, and fever. Patients taking Remicade are to “consult their doctor” before getting pregnant. Patients are not to nurse, while taking the drug and babies that were exposed to Remicade, during pregnancy, are cautioned not to get their vaccinations!!! This is all on Remicade’s website!! WOW!!! I know the side effects that I experienced were tiredness, skin rash, and nausea! Not fun!!

I also want to go over the list of ingredients in Remicade. The active ingredient is Infliximab and inactive ingredients are sucrose, polysorbate 80, monobasic sodium phosphate monohydrate, and dibasic sodium phosphate dehydrate. One ingredient that stands out to me and that made my jaw drop is polysorbate 80. Yes. The same ingredient that is in vaccines, ice cream, chewing gum, shampoo, vitamins, condiments (I saw it in a jar of pickles) and a lot of other products. Polysorbate 80 was shown to cause infertility and sever ovary deformities in rats. A case study showed that Polysorbate 80 caused pregnant women to go into anaphylactic shock and that its harmful to people with Crohn’s disease. Question? Why the heck is this ingredient in a drug to “treat” people with Crohn’s disease?

I’m speechless. For real. I was on this drug for around a year and to be honest I never did much research. I guess the saying “ignorance is bliss” comes into play? What about “ignorance can kill you”! I guess, at the time, I wanted a quick fix and I guess Remicade did that for me…I think?! I started my infusions around October 2008 and started at the lowest does. The drug eventually stopped working for me and by February 2009, I was on the maximum dose of Remicade. The doctors told me that if Remicade wasn’t going to work, that I would have to start a sister drug of Remicade called Humira. My Crohn’s disease did end up getting under control with the maximum dose of Remicade but I believe it was because of the strict diet regimen I was following. I was following the Swiss Detox Diet…more on that below. In the summer of 2009, my husband and I were ready and wanted to start trying to get pregnant with our second child. We scheduled an appointment with my GI and explained how we didn’t feel safe being infused with a drug while trying to get pregnant and even carrying a baby. He said, “Remicade is totally safe to take while being pregnant.” To me the thought of being infused with an immunosuppressing drug, while growing a little life in me, didn’t seem right. I at least wanted to start lowering the dose I was being infused with. The doctor assured me, “There has been plenty of research done and the FDA wouldn’t have approved the medicine if it was unsafe.” Not being satisfied with that answer I pushed a little more and expressed that I didn’t want to be on any sort of drug while attempting or actually being pregnant. My doctor replied, “NO ONE ever weans off of Remicade. Patients usually get higher doses or they need to switch their medications.” In the back of my mind, I knew that there would be NO WAY that I would carry a baby while being infused with Remicade. I needed to be drug free!!! My Doctor and I never agreed about coming off of Remicade completely but he did write an order to slowly lower my Remicade dosage (as long as my Crohn’s remained in good condition). This is when I dived into the book called The Swiss Secret to Optimal Health by Dr. Thomas Rau.

The Swiss Secret to Optimal Health talks about restoring health with the use of Biological Medicine. Biological Medicine treats the body as a whole using holistic treatments, homeopathic remedies, and diet. It has been used to help people with Cancer, Lymes disease, Autoimmune diseases, Coronary Heart disease, allergies, and digestive disorders. But unfortunately, not all of us can go through life healthy and disease free. Crap happens. Literally! What can happen to our bodies is that they can be overloaded with toxic, external disturbances (stress, alcohol abuse, overeating, antibiotics, food allergies, metals, toxins, bad gut flora, infections, dental disturbances and the list goes on and on) and can cause the body to react with symptoms  (for me personally- Crohn’s disease).  The book has a great illustration about our bodies being a barrel and how toxic disturbances can get added into our barrel throughout our life. Eventually throughout the years, our toxic load will overflow with symptoms such as Crohn’s disease, Colitis, IBS, Asthma, food allergies, etc.

As I said above, a major factor that plays into treating the entire body and that the book discusses is diet. The saying “You are what you eat.” is sooo true. If you eat crap, chances are you’ll feel like crap, look like crap, and produce a lot of crap. Can you see why diet is important? Don’t you wish GI doctors would tell you “YES DIET IS AN IMPORTANT FACTOR to your intestinal health”??!?! I believe diet was THE MAJOR roll for me in getting off drugs. Yes I know, I was on supplements but I could never tell if they were working or not. Food…I can tell what is good and what is bad and what is really bad. Dr. Rau discusses the importance of diet in many chapters of the book. He even established The Swiss Detox Diet that lasts about three weeks and once completed you are then able to be transitioned into a maintenance diet. The three-week diet is designed to help detoxify, de-acidify, remove food allergies, enhance cellular metabolism, boost your immune system, and regenerate weak or diseased organs. He has EVERY meal set up for you throughout the three weeks and even includes an extensive recipe section (the recipes are AMAZING and DELICIOUS!). I love it when I don’t have to think of a meal plan! The first three weeks are tough. I’m not going to lie. The meals are mostly made up with vegetables. REMINDER this is just for three weeks. This diet is what I did each and every time I lowered my dose of Remicade until I was fully weaned off. Yes! It was hard work. Yes! I cooked nonstop. Yes! It was worth it.

In January 2010, Ben and I got pregnant with our second son, Logan!! From the time I got pregnant, to delivery, I had been Remicade free for over a year and I know The Swiss Detox Diet was my saving grace! I can happily say I have been Remicade free since 2010!!! And I have only had to take “drugs” a couple times since being off of Remicade. I know that every body is different so what works for me might not work for everyone. But hey, it’s worth a shot right? My Crohn’s disease is finally the best its ever been and next year I’ll have been diagnosed for twenty years! I have bad days but that is due to stress, diet, and did I say stress? I haven’t been to a GI in years and am able to maintain my health with mostly diet and supplements. I currently do see a nurse practitioner that practices alternative methods and she has helped me get my health into an even better state. Thanks for reading my long, winded post. Until next time…

98 thoughts on “How I weaned myself off of Remicade

  1. “Polysorbate 80 caused pregnant women to go into anaphylactic shock and that its harmful to people with Crohn’s disease. Question? Why the heck is this ingredient in a drug to “treat” people with Crohn’s disease?”
    How many times does the drug to treat a disease CAUSE the very same symptoms you want to go away?
    It’s just one of the many problems associated with treating chronic imbalances with dope.
    Excellent and informative post Erika!

  2. WOW! Great post! It will be majorly helpful to anyone who is considering going on Remicade or who is already taking it. You posted facts that doctors conveniently leave out. The best part about your story (besides that you are feeling great now and drug free) is that you give other people a real reason to hope! Hopefully lots of people will read this and be inspired to give their body the medicine it needs— good food!

  3. Hi! I just read your blog, and it was really helpful..
    I have Behcet’s disease, an autoimmune vasculitis condition.. i’ve tried lots of other immunosuppressants and steroids, and my dr said i need remicade. it took 2 years to get it approved, because it’s not FDA approved for the condition I have. finally, it was approved for funding, and he wants me to start treatment..
    But, about 2 months ago, i started taking more supplements, seeing a functional medicine dr, and a naturopath, and changed my diet. it’s not totally paleo, but almost no carbs and the majority it fruits and veggies. So far, i feel the best i have in years! I didnt start the immunosuppressant he gave me 8 weeks ago, and am on the lowest dose of steroids since i’ve gotten sick!!
    but, now i’m having a hard time deciding what to do – take the remicade my dr worked so hard to get for me, or, just keep going the way i am. I will keep going with my natural health changes any way, whether i take the drug or not… but I’m scared to take the remicade! I dont want to make myself worse, by taking an immunosuppress drug that is only going to tax my system even more, but I dont want to turn this treatment away just because things are seemingly ok at the moment.. as you’d know, these health problems are up and down…
    I’d really like to hear about your experiences, before remicade, on remicade, and after remicade.. if you could email me that’d be amazing. thanks a ton!!! 🙂

      1. Hi leah I also have the behcets it was under control with Remicade for about 4 years.but I am having a flare up now.I’ve never actually spoken to another person with this behcets and I would love to speak with u. sincerely Tracey

    1. Hi! My eleven year old son was diagnosed with Neuro-Behcet’s (the vasculitis led to a blood clot forming in his head) 15 months ago, and has been on Remicade infusions (now every 8 weeks). I would really like to have him wean off of the Remicade. I also would like to hear information/thoughts on weaning off Remicade with diet/supplements. Thanks! Stephanie

      1. Hi Stephanie,
        Thank you so much for the comment. I’m not too familiar with Neuro-Bechet’s but I know that I was able to wean off Remicade doing diet cleanses described in Dr. Rau’s book. I was also seeing a Naturopathic doctor. I do believe that it was a mixture or diet and supplements that helped my body truly heal and I was able to wean off the Remicade. I hope your son is feeling better and that he will have success coming off the Remicade.

  4. Hi! I just read your post and i needed to tell you how much hope it has given me. I live currently in Nova Scotia, Canada and was diagnosed at 12.. now im 26 and have an amazing husband and daughter who is 17mos. Its 3:30 am and im up with pain. I have major distrust in doctors, i was supposed to start remicade a few mths ago but an overwhelming feeling mixed with research screamed at me not to. I tried a naturopath but its so so expensive, and my GI wont call me back anymore now. Yay. Anyways. I am going to look up thos swiss diet book. I am starting to have spine and joint pain and rectal pressure. Im praying i can find my saving grace. Thank you thank you!

    1. Hi Ashley,

      It sounds like our cases are quite similar, and I’m also in Nova Scotia now. I’ve been on Remicade for 10 years! “Ignorance is bliss” is right! Glad to read this and see some other folks who have had success. I’m determined to get off it, and have a good friend who is a nurse in the UK who is helping me through some of this. Curious to know how you’re doing?

  5. Hi Erika,

    My 18 year old son was diagnosed with Crohn’s disease in June. He developed night sweats, was losing weight and felt lower abdominal pressure. A CT scan showed an abscess. He went on Zocyn for a few weeks and intravenous TPN for 4 months. He is also taking Cipro and Flagyl, which will end next week. Surprisingly, no steriods have been prescribed. Unfortunately, two GI docs are recommending Remicade. My son has not had any bleeding or abdominal cramping. I really don’t want him to start this drug unless absolutely necessary. I, too, believe that diet should be the first choice for treatment and am having a hard time understanding why the docs disagree, especially given the seemingly symptom-free state that my son is in. Why not try diet first? The docs say that prolonged inflammation can cause cancer. Well, so can Remiade! I want to thank you for your story. It reaffirmed for me that Remicade may not be our only option. Really, what do we have to lose by trying diet first? Sorry for rambling on your blog. Thanks for listening.

  6. Hello Erica. Greetings from Greece!! Great job with the blog!! I tottally agree with your post! Holistic methods are 1000% underminded by the majority of the clasic doctors, even though they have greater results than clasic drugs (such as remicade). We,also, shouldn’t forget that a healthy diet (accompanied by organic supplements and without drugs ,alcohol abuse, etc) and a decrease of the oppresions in our everyday life is a better way to treat your body and soul, than to infuse a mouse protein (yes.. that is remicade..) in your immune system. So more or less i’ve done what you are doing now (with the help and instructions of my dear dear dear mother who never stopped researching for me!!). I started, 4 months ago, a holistic aproach to my Crohn’s disease accompanied by changes to my way of thinking and I have seen far far far far far greater results than with the drug. As you already may have thought, i now want to stop the bloody thing. So I would be greatfull if you could tell my how did you stopped it. Did you do it abruptly or you slowly lowered your doses. Anyway, thanks for your time! Keep awakening people!!!

      1. I would like to know the answer to the same questions George has. I have been on remicad e for ten years for psoriatic arthritis and severe psoriasis. I have had infections, skin cancer recently, upper respitory and sinus infections. Now, I have pain in my right foot with inflammation and afib. My daughter wants me off of it and begin a strict vegan lifestyle. I am 73.

  7. Thanks for the info. My 13 yr old daughter was diagnosed with crohns about four weeks ago
    And doctor put her on remicade as the treatment. I am not comfortable with this at all and she has had two treatments. I have noticed she is very moody for a day after the treatment and then 5 or 6 days later becomes very tired to where she can’t function. She also hurts a lot. She was not like this before the remicade. I feel trapped. Your post was very supported and thank you for taking the time to share.

  8. Thank you for sharing your experience. It is nice to know others have had success with a holistic approach rather than the awful drugs such as Remicade. I just recently refused my most recent infusion of Remicade as I was increasingly worried that all my current symptoms were a product of the drug not the disease (Crohn’s for 15+ years). My GI doctor is so quick to say that all my symptoms are not related to Remicade. Most GI doctors in my experience only treat for symptoms with medication and not one has recommended a holistic approach such as diets and supplement recommendations. It is terrible, I guess that keeps them in business though.

    At any rate how long after you stopped Remicade did you start to feel better? How long does it take for the drug to clear out of the body? I’ve been on almost every medication in the book but they have all caused side effects. I was on Azathiprine and Allopurniol but changed to Remicade to lessen the side effects, wow was I wrongly advised on that. Remicade made it 10x worse. Extreme fatigue, dry skin, hair loss, depression, etc.

    Thank you!

  9. Hi Erika,
    thanks for sharing your amazing story! My daughter is the one who found your message and insisted that I should read it. I’m so happy to know that you are so brave to stop the drugs. I was diagnosed 15 months’ ago with Rheumatoid Arthritis, and was house-bound, bed-ridden for months, then with the steroid Prednisone, I felt better for a while. Then my doctor put me on ‘Infliximab’ drip bi-monthly. I had 4 drips already. I felt better but I do not want to depend on it for the rest of my life. My doctor insisted that I should continue and if I don’t the drug will not be effective anymore. So, after reading about your Swiss Detox Diet, I shall look for the book written by Dr Thomas Rau. May I know how long did you keep with the diet, or do you have to live on this diet for the rest of your life? If I can’t find this book, where else can I get it? Other is there any other way to treat RA? Thank you from the bottom of my heart and may God bless you.


  10. I was diagnosed at 13 years old (22 now) and have been on Remicade for 4 years and I want to come off of it BADLY. I will be honest, each time I get infused I do feel better for a few weeks, but I feel better for a shorter and shorter period of time as the years go along and I feel like my body is just getting used to it. My GI upped the dose and now he wants to shorten the intervals but I have a gut feeling that if I continue relying on Remicade to keep me healthy I will be in for some rough years during my older age because of the unknown (and I expect very serious) potential long-term side effects. I already eat very healthy (Stricly Paleo Diet) but still get feel sick often for some reason.

    Are you on any pharmaceuticals at all to manage your Crohn’s? What kind of supplements do you take?

    DO you have any advice?


  11. What an uplifting blog! I am at wit ends right now. My husband has been recently diagnosis with Crohn’s disease. In the past six years my husband has experienced stomach and bowel issues. My husband stopped going to the GI doctor because he felt he was getting no answers and every time they turned around they wanted more money. This summer my husband was experience severe stomach pain and unusually bowel issues. I work in a hospital and we just got a new GI doctor, who I met and really liked. My husband agreed to go back to a GI doctor to undergo underlying issues. Test after test, after test, it was confirmed he had Crohn’s disease. (Glad we have insurance)

    The GI doctor put him on prednisone 40mg per day and Azathioprine. Well the stomach pain was worsening so more test were ordered and end results was the removal of his gallbladder for gallstones. My husband was still experiencing stomach and side pain which was radiating to his left side and to his back! (OUCH) GI doctor was out of town, but communicated to me to take him to the ER and his partner will admit him to the hospital. No problem. Since my husband is a patient of a certain primary practice in our area, the GI doctor couldn’t admit him. Our primary physician came to the ER and admitted my husband. GI consulted in hospital and we started weaning my husband off the prednisone and Azathioprine. The medicines caused my husband to have severe pancreatitis and drug induced diabetes! My husband was just looking for relief. The hospital visit lasted a week!

    The new medicine his GI prescribed for him was Entocort (Budesonide) and treatments of Remicade. After the second round of Remicade and several months of taking the entocort, my husband was having severe headaches/migraines. So now we have added diabetes and migraines to a man that never had any issues with this until this preventive therapy. By week 8 of headaches we had manage to go to the ER twice, a few family doctor visits, ENT doctor, and then a neurologist. Neurologist said this is occipital neuralgia. Two nerve blocks, MRI, lumbar puncture later…this was not the case. Severe migraines is the official diagnosis. Started him on migraine preventive medicine to take before bed, and start a therapy call DHE (dihydroergotamine – injection, D.H.E.45) to break the headache cycle.

    I asked the GI doctor to take him off the entocort because we felt this and the Remicade were the only new medicines introduced that could be causing the headaches. Hesitant, but he did. Had another check up with GI after 2 weeks off entocort and he proceed to tell us that my husband liver enzymes are high and off the charts, we need to do a liver biopsy. I am just blown away! My husband just got thru with the DHE therapy, catches a stomach bug, and BAM…headaches are back! This is no quality of life! My husband is 44 years old, and up until recently was in better health!

    Considering asking the GI doctor to take him off the Remicade. Again, the GI does not feel that these drugs are causing my husband headaches, or other symptoms. Up until the last visit, I was just informed my husband will be on Remicade indefinitely! I was told in the beginning just a few series of this medicine. I feel that we have been left in the dark. My ignorance was not to do some research in the beginning and I trust that this was the solution to a better life. I want to order this book you recommended and read about the Swiss detox diet. My husband is so depress, weak, and just wants his life back. He has been unemployed lately, because of the weakness, sickness/disease and migraines. On some days he can’t even get out of bed. My husband has put on several pounds during this process which is from some of these medicine and not being active. This disease has really taken a toll on our family and marriage. I couldn’t tell you how many pills this man takes. It’s crazy!

    Did you have major side effects from the weaning process? When did you feel some form of normalcy? I understand each case is different. We just need some hope and reassurance. Do you still continue to use this diet and what other alternative methods do you use? I am just learning, so excuse me for my ignorance. I just want him healthier! Knowledge is power!

    I hope you and your family are doing well. Again, I loved your story!

    Best, Theresa

    1. Hello Theresa! Thank you for reading my blog and for your wonderful comment. I just sent you a private email!

  12. Thank you very much! We are working with a Maximized Living chiropractor who helped us overhaul our diet. Unfortunately my daughter who is 13 and has Crohn’s is back in the hospital treating a flare. She’s been on remicade, humira and most recently cimzia over the past 6 years. The remicade and cimzia themselves make her pretty sick. I’m not a fan of these strong medicines that only reduce or hide symptoms.
    Your blog was proof that we can get this managed without major ‘medicinal ‘ inputs. Thanks for the HOPE!

    What did the conversations with the GI sound like? How did you convince him finally? How has he responded since you no longer need him? Any advice is welcomed!

  13. Hi,
    Thank you so much for posting this. I have Ulcerative Colitis and have been on Remicade since 2008 after I had my son with no issues with my colitis until 2012. I have been on the GAPS diet since 2013. I started the GAPS diet because I developed IBS symtoms after trying a homepathic medication 🙁 Anyway after I started my eating plan for the IBS I began hoping to transitioning off of Remicade as you did. I am hoping that the diet that you have discussed above and the book can give me some more tools to do so. So thank you with all my heart for posting this for all of us to see. What an amazing story that gives me hope.
    Do you know if your blood work showed any signs of inflammation during your stint with Remicade or during the transition off? Every time I try to transition off of the Remicade my bloodwork shows my inflammation rising if I go farther out than my 8 week window. Also, does the book you spoke of above discuss what I can do to lower my inflammation so that I can feel confident in transitioning off of this? Again thank you so much for posting your story what an amazing gift.

      1. My daughter was only diagnosed with UC 3 weeks ago. She did 2 weeks of oral steroids prednisone then 1 week IV steroids (in hospital) now they say inflammation level still at 90 and have given her 1st dose of remicade. After 24 hours we are not seeing a lowering of inflammation so they are advising surgery. She is 14 years old and I do not want to condemn her to this life style. Any input is appreciated.

        1. Hello Maureen. Thank you for your comment. I’m so sorry your daughter is going through this. And my apologies for the late reply. I myself haven’t been feeling the greatest.

  14. Hi-
    Thank you so much for posting information on how you weened yourself off of Remicade. my son was diagnoised 5 years ago with Crohns. Prior to diagnosis he had mild loose stools. We tried a few things at home and after about a month took him to the peditrician who diagnosed him as having low iron. The real problem began when he developed a perianal fistul, this occured a moth later while he was on the cross country team. He was running 5+ miles a day ( I have always thought the physical stress of the daily 5 mile runs caused the fistula). He had a colonoscopy, was diagnoised with Crohns and then immediatly put on Remicade. He has been on a low does of Remicade and nothing else for 5 years. He has remained complety symptom free except for one little fistula that developed after he had his wisdom teeth out. From the beginning I felt that the treatment plan was a little extreem for his condition. But, as other have experienced, the doctors do not encourage patients to come off of this drug…EVER! My son is 20 and continues to go in every 8 weeks for his infusion. The problem he is having now is small infections, acne, ingrown hairs, probably a result of a weakend immune system . It is so frustrating that the doctor’s are not willing to try different things for patients who want options. Since he is symptom free we don’t get much new info. Should I get his blood work check more regularly, and then what am I looking for in the results that show his inflammation levels?
    Thanks for your time 🙂

  15. Thank you for posting this great story. I have been having the same nagging feeling of starting my son on Remicade, but didn’t know what else to do. Your story has given me hope. Is the diet you mention vegetarian? Would it be possible for me to understand a little bit more in detail how you went about. We are scheduled to start on the drug this week and I consider myself blessed to have come across your posting.
    Best and Regards!

  16. Hi my name is Kiki and I was just diagnosed with Crohns in May. I am taking steroids. Although my symptoms are much better, my doctor is not happy with my clinical results and they want to start Remicade. Do you think the Swiss diet will help me get to remission? Please email me what you think based on your experience.

  17. I love your blog. My 10yrs old daughter was diagnosed with Crohn’s 3 months back. She has been on Enteral therapy and Steroid for the past 3 months and everytime we tried to taper down the medication, it did not work and inflamation increased. Now her doctor wants to start Remicade!! As a parent, I am having hard time to put her on this medication. I am willing to try anything prior to start of this nasty medication. I got the book and started reading. Thanks for sharing your story. Are you still following the diet? Is that still keeping you in remission?

  18. Hi there! I’m so excited to have found your blog! I’ve been on Remicade for 4 years now, since I was diagnosed with crohns. I’ve had digestive issues for the past 15 or so years since college, which I believe was brought on by bad diet choices and stress! I’ve been pushing my doc to allow me to go off of Remicade for a while now and every time he fights me on it. I have 2 daughters.. Both pregnancies I was on Remicade with the exception of the 3rd trimester. I am currently breastfeeding my 7mo and also breastfed my oldest for a year while on Remicade. My concerns are increasing with this drug and I truely believe I could manage the crohns with diet and supplements although my fear is losing my doc altogether and ending up back in the hospital. I get chronic sinus infections and recently am trying to get over impetigo! It’s incredibly frustrating feeling like my body can’t heal because of the Remicade. I know ultimately it’s my decision but in my gut, I want to be drug free. Any further advice you can give would be so greatly appreciated. Thank you for sharing your story! You give me hope!!

    1. Thank you Lauren for the comment. I hope you are feeling well and were able to wean off the Remicade. I totally get the issue and fear of having your doctor “fire” you as a patient. Its scary. I went through it with my children’s pedi when I said we weren’t going to vaccinate. I’d try and talk with him and see where he’s at and see if he’ll be supportive to at least help you lower your dose. I got to a point where I felt great and was at the lowest dose of Remicade. I ended up “firing” my GI doctor as I was working with a naturopathic doctor and felt comfortable with just that. Its your body and I feel that everyone needs to do what works for them.

  19. I am thinking of stopping remicade after 4 years of being on it. I was down to 87 pounds before Remicade. I have now been in remission since I started it and up to 115 lbs. I am really tired of the side effects of this treatment that go along with being in remission. I have so many questions, which i’d love to speak with you about. Are you still feeling well? How sick were you before you started remicade? Sticking with the diet seems to help? DO you have to take any supplements or vitamins? And have you been hospitalized for crohn’s since going off of it? Lastly, how did you doctor handle you deciding to go off of it??

    1. Hi Natlaie. Thanks for the comment and all of your questions. I’m currently not feeling the greatest but will be posting a blog post soon to explain that in more detail. I was really sick before starting the Remicade. I was in the hospital for three weeks and had just had my first child. I did find that sticking with the diet explained in the Swiss Secret to Optimal Health was very helpful to me and my healing. I do take supplements everyday. I’m currently taking digestive enzymes, probiotics, and a few other specific supplements that help in healing the gut. I have been hospitalized once but it was due to having blockage in my intestines. My doctor was pretty understanding when I asked him to start weaning me off. I wanted to try and get pregnant and told him I didn’t feel comfortable being on the Remicade. He was supportive to a point. He never wanted me to come completely off of it but at least he was willing to start lowering the dose.

  20. My 11 year old son was diagnosed with Crohn’s last week. His colon is severely inflamed, he’s anemic and has acute duodenitis. The Doctor wants to start tier 3 treatment including Remicade. I would rather get him in remission and try a gluten free/ dairy free diet. It’s very stressful. I would like to get the book and see if it could help.

    1. Hi Susan. I hope your son is feeling better. I hope you were able to get the book and find it helpful to you. Thanks for the comment.

  21. Hi Erika,
    Thank you for your courage and ingenuity. I also would like to know the process you used for weaning off and would welcome an email from you at your convenience. I have Crohn’s and have managed to get off everything but Remicade and have found the last two treatments left me feeling worse! I’m just not sure how much to reduce at what intervals? Thanks again.

    1. Hi Beatrice. Thanks for the comment. The mg amounts to reduced were decided by my doctor. And the intervals depended on how I was feeling. So its hard to have an exact amounts as every body is different.

  22. Hi all. Hope this goes someplace where bit should
    Living w/ crohns most my life. I am 70. Had huge resection in 1994.
    Put on Remicade 11 years. Developed shingles . Was horrible.
    Remicade nurse took me off. Had shingles before and that was nothing
    Compared to this little dilly. Now they tell me I am flying without a net.
    Has been over 2 yrs. Whats the deal w/these drugs and the docs Seem to believe bios are best thing since sliced bread. I wish I knew?!



  23. Thank you so much for writing this post. I have been taking remicade along with azathioprine for the last 2 years and have actually seen great results but I recently had to stop my infusions due to health insurance complications. I began to worry that without the infusions I would flare up. However, after doing some research on remicade (research I was kind of too scared to know about but should have done a long time before), I am now thinking that this might be the right time to stop remicade. I will look into your diet suggestions, but I am also wondering what supplements you are taking? Also, do you find you have to keep a strict diet all the time or can you now be a little more flexible? I would love to hear from you, and I am glad to see this community exists in the Crohns world.
    Thanks again,

    1. Hi Claire. I hope you were able to wean off the Remicade successfully. I’m currently on a probiotic, digestive enzymes, and a few other specific supplements to help aid in healing. But honestly, I’m not sure I’d recommend any supplements except maybe a probiotic and digestive enzymes. Each body is different and what supplements work for me might not work for you. Currently, I do not follow the Swiss Protocol. I eat mostly gluten free and thats about it. I found that as I was healing, I was able to be less strict as far as my diet goes.

  24. thank you so much for sharing your experiences, i have been diagnosed with Ulcerative Colitis since the age of 20 (im now 26) and also was put on remicaid almost immediately due to it being a severe case. It all happened sooo fast, and now 6 years later, although i am virtually flare-free, i also would like to get off of the remicaid. I am currently trying a whole30 approach to eating and am 34 days in. I am hoping to see a big difference in bloodwork when i go for my next infusion at the end of the month. I too want to see about weaning off of the medication and thankfully my doctor has been pretty openminded in the past, but also i know he still would probably try to discourage me from trying to get off of the remicaid…. Because as others have said, according to the medical doctors, no one can ever get off of remicaid, ever! What a great way to ensure that you will always have a market for your product right? Tell people that their only option is to take this medication and once they are on it, they can never stop it…. Wow. I wish at 20 years old i would have had the forethought to research before just doing what the doctors told me i had to do…. Colonectomy or remicaid. Well at the time i thought i was choosing the lesser of two evils of the only choices that i had, but now after reading your blog, i realize there ARE more options out there. Could you please give me some info on how you went about talking to your doctor, how you started, also how you are doing now, is there specific blood work i should ask for, did you have any negative side effects when weaning off of remicaid???? Sorry for the loaded questions, i am just very very interested in your story and also very inspired by it. Any help/suggestions/comments that you have would be greatly appreciated.


    1. Hi April. I hope your are doing well and were able to start your weaning process. I know I’m answering your question very late but hope it will still help you out. I approached the discussion of my weaning process of wanting to get pregnant so I feel my Dr was very open to “allowing” me to wean to a lower dose of the Remiacde. I also was in remission and feeling great so that also helped in convincing him. I didn’t do any specific blood work that I can remember. And I didn’t have any negative side effects from weaning off. I actually noticed the side effects from the Remicade- they went away. As for an update on how I’m doing now, I’m still doing good. I’ve never had to go back on drugs. I’m controlling my Crohn’s disease with diet and supplements. I still have bad days but know its probably because of something I ate etc. I hope this helped and be sure to check back for a more blog post on my current situation.

    2. Hi April,

      “What a great way to ensure that you will always have a market for your product right? Tell people that their only option is to take this medication and once they are on it,…”

      Lol. I already built up antibodies to Remicade and ended up in the hospital for the third time in the past year as a result of having built up antibodies. So my GI tried adding a bit of 6MP to fool my system into not producing antibodies against the Remicade. It was only after adding the 6MP that I went into remission. Still, GI’s are taught in medical school that we have to take these dangerous medications for the rest of our lives or we will end up in the hospital again. The fact is we will end up in the hospital anyway if we continue to take these dangerous medications when we are in remission because we will build up antibodies to them the longer we are on them.

      Still, I’m not looking forward to telling my GI that I want to stop the Remicade infusions and then get off the 6MP. Despite the fact that I was in remission for 10 years between flares, I know he isn’t going to be happy that I want to stop the heavy meds.

  25. Erika,
    Just found this blog- thanks for the accurate description of your situation. I’m looking for information to share with my 23 year old son, Alex, who was diagnosed in April of 2012 with Crohn’s disease. He has been on Remicade since first dose in February of 2013. He was also doing the triple antibiotic protocol for MAP infection until September of this year, or almost exactly 2 years. Alex is symptom-free, eats almost exclusively Paleo, exercises once or twice a day, and is in almost perfect health- better than when he was first diagnosed! So, my question is, why not eliminate the Remicade? Obviously, the rub is, we don’t know exactly what put him into the near perfect state of health he is currently experiencing, so you hesitate to eliminate what may be a contributing factor in your reversal of symptoms. What advice do you give to such an individual, when, as stated by many others in comments here, we know what out GI doctors opinion of stopping the protocol will be. Thanks again for your work here, which is obviously appreciated and needed by many!

    1. Hi Ron. It sounds like Alex is off to a good start. I was on Paleo for a while as well and have heard many people to have good healing results following that diet. I guess my advice would be is that you know your body the best. The drs see you for an hour every few weeks (do they really know whats best for you). I knew that my body was ready to stop the Remicade. I feel that the drs can’t tell me what to do and that I’m the one seeking out their advice. If Alex is feeling great and eating a clean diet, whats the harm in trying to wean off? Hope Alex is still feeling well and I apologize for the late response.

  26. Hi, I read this post and felt wonderful if there is a special diet that helped you. Way to go! How can I know the diet you talked about?

  27. I’m 17 and have been in Remicade for a little over 3 years. I really wish I hadn’t started in the first place. I was wondering the process you took, if you had to ween off of the meds or you stopped cold turkey. I don’t want to take this anymore but I wanna be careful because I stopped Humira cold turkey and that was the worst thing that has ever happened to me lol Thanks so much!

    1. Hi Natalie! I hope you are feeling well and I apologize for the late response to your comment. I didn’t stop the Remicade cold turkey. I weaned off it slowly and with each injection (every 8 weeks), I’d lower the dose. Once I was at the lowest dose the drs administer, I stopped going. I was on a strict healing diet protocol found in the book The Swiss Secret to Optimal Health. With a lot of Crohns/Colitis medications, I don’t think its ever a good idea to stop them cold turkey. Most of them need to be weaned. Its also important to know that I was working with a Naturopathic DR.

  28. Hello All,

    I’m from Quebec, Canada and things are quite different here. Actually, in Canada, each province manages their own health care. And what I can tell you from being on Remicade for 7 years, is that it is indeed poision. My story is quite long so I will simply tell you that Remicade is not something you wean off of. After 8 weeks, its no longer in your system. I can confirm that the manufacturer of Remicade clearly states that they never have conducted any studies on pregnant women & their fetuses, thus they can not recommend it. In Quebec, most doctors either recommend not to stay on Remicade during a preganncy and others will say to stop the treatment at the 3rd trimester. By law, in this province, you must stop the Remicade before your 3rd trimester.

    Remicade has saved me but it also caused many other problems. The side effects are brutal! After the 1st month on Remicade I gained 15 pounds and after 7 years, I was never able to loose it no matter how prefectly I ate. I had constant brain fog, major digestive problems, leaky gut, a ton of parasites in my gut which caused me to have IBS, my periods were horrendous, my estrogen level would sky rocket, I was always extremely exhausted, major pressure headaches and I might be forgetting a few things. Now, all of these symptoms came gradually over a 7 year period. I am now fed-up with my symptoms so I just stopped everything. My doctor agreed with me and we’ll see how it turns out.

    During this past year my husband was diagnosed with kidnet cancer with bone metastasis. His disease has forced me to get my act together and do my research. I have put the both of us on a strict detox diet, we take supplements and eat whole foods. We have a very stress free lifetsyle and have completely changed our outlook on food, health and life in general. We are both doing so well, although its still quite early in our health journey. I know we are on the right path to healing ourselves.

    The problem is with our food chain, all the toxins in our environment and stress and I also believe spirtuality has a lot to do with this epidemic of illness.

    One last fact. Inthe US alone, 24 million individuals are diagnosed with some kind of inflammatory disease and the numbers are climbing. We all need to wake up and make healthier changes.

    Good luck to you all and I am always happy to share my experience with anyone needing some support.

    Julie 🙂

    1. Hi Julie! Thank you so much for sharing your story!!! I hope you are feeling well and hope your husband is too. I completely agree that a lot of our issues start with the food chain, toxins in our environment, and stress. We live in a world where people totally depend on fast food and quick fixes. I’ve found with healing naturally, there is no such thing as a quick fix. It takes time for the body to heal with nourishing foods and supplements. Thanks again for sharing your experiences. 🙂

  29. my daughter was just recently diagnosed with Crohn’s disease. She is currently taking 6 mp and is not working. We,ve seen 2 GI DR and both said the same thing Remicaid. As a Mom I,m very nervouse about this. I want to find a Natural Dr to see what they would say. I didn,t know this is a chemotherapy drug. I want to make the right decision for her. But to be on this for the rest of her life. She has crohns in her stomach and esphogist. Not fun for her at all.

    1. Hi Linda. I hope your daughter is feeling ok. My apologies for the late response to your comment. I would do a quick google search for your area and see if there are an Naturopathic Drs in your area.

  30. Thank you for sharing your story! This crazy government conspiracy has got to stop now! Why would FDA ever approve the polysorbate 80? I would never vaccinate my kids. The odds of them dying anyway are 100%. I say we all go natural… People in other countries without advanced meds have a life span of 40+ years, and why can’t we have that too? Is the improved quality of life, being able to walk, type on a computer, do things you used to do really worth that risk of taking a biologic? nah…

  31. Hi Erika! Thank you so much for posting this in your blog. I just googled ” How to stop taking Remicade ” and you are top of the search list. I have a lot of the same questions people who commented before me ^ have had, so I hope I am not making you repeat yourself! (and I hope you see this comment, a year after most everyone has commented on this post)

    My mother has been taking Remicade for 7-8 years for every 8 weeks and she really wants to get off it– the whole affect of the drug on her body (chills) feels highly eery and unnatural to her, not to mention the long list of side-affects. I believe that she is in the best health possible despite it because she eats very well– grows a lot of her own vegetables, organic everything, etc. Exercises when she can (lately she hasn’t been able to) by swimming.

    I’m just wondering how you slowly decreased your dosage in relation to your diet– I think all my mom has to do it continue eating as she does, but maybe a little more regularity on certain herbal tonics she makes herself etc. I don’t want to ask a doctor necessary because their disciplined acquiescence to the influence and say-so of the pharmaceutical industry has been really downright enraging to deal with.

    Just want to ask others with experience with the drug first how they went decreasing their Remicade intake? By what increments in Mg? Her dosage right now is 250 mg.

    Thank you! I hope this account is still active. Thank you anyway for keeping a blog and sharing information! This has definitely given me hope and affirmation for my mother. I guess given how long she’s been on the drug, she’s doing as optimally as possible. She is only 49 years old though, so we would both like to see a slight reduction in intake as to decrease her dependence for hopefully many years to come!

    1. Hi Cheryl! Thanks for the comment and my apologies for the late response. I hope your mom is feeling better and she has been able to wean off the Remicade. I decreased my remade dosage based on “how I felt.” I had spoken to my GI about trying to lower my dose to the lowest possible dose and he was willing to work with me. He never wanted me to completely stop though. I was also working with a Naturopathic Dr and she had me on supplements as well as the healing diet from the book The Swiss Secret to Optimal Health. Honestly, I forget how we decreased the mg…but every 8 weeks we would decrease until I was at the lowest possible dose. I eventually just stopped the Remicade but was still seeing my Naturopathic Dr. Again, I hope your mom is feeling better and that she was successful with weaning off the Remicade.

  32. Oh how I wish you had answered some of the questions on your blog. The writers asked you the same questions I am going through right now. I am going off Remicade after 15 years of being on it. They told me I could take it forever without any problems. WRONG!!!!! The past two years I have started with several of the symptoms your readers above have named. I am looking forward to being off the ‘needle’ and trying to handle things on my own. I have had Crohn’s for 42 years and cannot take any of the other drugs for the disease. So going to try and go it without anything. I just feel I need to dry out. Thanks for the above article. I hope you will do some more blogging about how you are doing and what has changed since you quit cold turkey. Thank you so much!!!!

    1. Thanks Lynda! And your right. I have been absent from my blog which is not good. Life has been crazy. I’m going to write up and update and answer questions people have been asking for the past 6 months. Hope you are feeling well and you were able to wean off the Remicade.

  33. Thank you so much Erika for sharing your inspiring journey towards health! My daughter was diagnosed 16 months ago at age 12 with Crohn’s Disease. After taking 6MP & Apriso for 2 days which produced extreme nausea, I decided to go holistic and after a few weeks on the Specific Carbohydrate Diet, started her on the GAPS diet along with supplements: 2 awesome probiotics – VSL#3 & earth-based Prescript-Assist ; S-Acetyl Glutathione; EFAs; & Vitamin D3 with K.
    The first 3 months of the diet, which nourishes the gut and addresses vitamin deficiencies through bone broth, cooked vegetables, stewed meats, fruit smoothies &vegetable juices while dairy-free (except for 24-hour fermented yogurt & kefir from hormone-free grass-fed cows & goats) while staying 100% grain-free (think nut flours) and of course sugar-free were transformative. Her nausea ceased. My daughter never had too much of a problem with constipation or diarrhea, but her bowel function did improve. Ulcer pain subsided. Her blood work came back greatly improved and her iron levels elevated. I relaxed the strict GAPS diet after the initial 3 months and we migrated to a Paleo diet more or less, while I introduced rice and some gluten-free items.
    She felt amazing all fall and winter and I stayed away from the GI Dr who did not agree with my approach. Extended family members were skeptical but surprised and relieved that she was doing so well. What we did struggle with was waxing and waning energy levels and anemia but I felt it was something we could continue to improve as time moved on. My daughter has always gained weight as she grew and I consider her symptoms on the mild side compared to so many others who suffer so mercilessly from this disease.
    This Spring she had a flare, which I learned can come hand in hand with seasonal allergies kicking up her immune system. Her symptoms were extreme fatigue, ulcer pain (not nausea, she knows the difference) and anemia (she was very pale). As I did not connect her allergies to the flare up, I decided to return to a GI Dr. for more tests. This second endoscopy in May (after a year) showed stomach ulcers, which I healed with fresh cabbage/carrot juicing (had a 3rd Endoscopy early this month and no stomach ulcers). I have taken her to a Chinese practitioner for Acupuncture treatments to de-stress her body as well. I believe Essential Oils also help.
    Her Colonoscopy this month showed no colon ulcers/disease activity (a complete turn-around/improvement from her first over a year ago). However, her scope and recent MRI did show some disease activity – ulceration & inflammation – still within one area of her small intestines (no fistulas or abscesses). Based on this, her new GI Dr. highly recommends Remicade… “in case” she would ever develop a fistula or abscess.
    I am terrified. If it was just me in a bubble, my instincts guide me to continue on my holistic path as I feel in my heart that is the best & healthiest course for her soon to be 14 year old body. My problem is that I have the GI Dr., extended family and my daughter’s father (we are divorced) placing extreme pressure on us to go the Remicade route.
    My daughter is over her spring flare (no more seasonal allergies!) and is doing amazing, summer being her best season with increased energy levels and sun… and now Monday she starts on her first infusion of Remicade. She is very sensitive to medication of any type and I enter this trial with extreme prejudice and eyes wide open, with a lot of dread and sadness. I know in my heart that her best chance at optimal health is the holistic approach that we have taken. So many people want to throw all of their faith in western medical doctors as health gurus… when they do not even consider nutrition a factor in disease of the gut! Really? I am allowing this trial to happen to see if she ends up getting more energy (no anemia) and to placate the growing list of people around us who feel that I should try what the Dr. is saying is necessary. Is a special diet challenging & expensive? Yes. But in my opinion, completely worth it considering the alternatives. But as a teenager, she also wants to try Remicade because in her mind, she can eat a more normal diet. Yet we fear the side effects…polysorbate 80? really? Mouse protein?
    Thank you for allowing me to share our story and for posting your healthy diet approach. I will definitely read ‘The Swiss Secret to Optimal Health’ by Dr. Thomas Rau as yet one more item to add to my arsenal in fighting our way back to where her body should be after the assault on her from environmental toxins ( I definitely am a believer that immunizing infants so young assaults their immune systems!), a severely unhealthy food chain supply (Genetically Modified Organisms, really?) and stress…
    One more side note for readers:
    Late last month, the U.S. House of Representatives passed The Safe and Accurate Food Labeling Act of 2015. But it is only known by this name by supporters. Opponents are calling it the Deny Americans the Right to Know (DARK) Act. No matter what it’s called, the bill aims to stop all mandatory genetically modified (GM) food labeling initiatives nationwide. A Senate version of this bill has not yet been introduced, but if it becomes law, Americans could lose their right to know what’s in their food and how it is grown.
    Life is getting very scary on this planet.

    1. Renee,
      Thank you so much for sharing you and daughter’s story. I’m glad you have found such great success with alternative treatments. I totally understand your feelings in regards to the remicade. I hope your daughter will respond ok and not have any adverse side effects. What is the reason for her to take the remicade if she is feeling ok? Well thanks again for sharing your story and experiences!! It’s great to get the word out there that there are other options out there then just medicines.

  34. Thank you so much for this blog!! I am currently wanting to wean off Remicade (I have Crohn’s), but had some fear. I’m seeing a holistic doctor and can’t wait to get off. You mentioned you had to take other drugs. What other kinds of “drugs” did you have to take?

    Thanks for your help and insight!!


    1. Hi Angela,
      Thank you for your comment! I’m happy you are going to head in the direction of weaning off your Remicade. I hope that it’s going well for you. I have taken so many prescriptions for my Crohn’s Disease. I was taking Prednisone, 6MP, Asacol, and Imuran to name a few.

  35. Erika,
    Though I am a number of years late to seeing this post, I’m so happy to see that you’ve had great success after coming off of Remicade! I started Remicade treatments just after my 18th birthday for ankylosing spondylitis, and unfortunately for my the negatives outweighed the positives with this treatment. Within the first few months my hair thinned significantly, and over the course of the first year of my treatments I lost 30 pounds. Being I was only 5’8 and 110 pounds to begin with, it was something of a concern.
    I was never able to make it to the ‘maintenance’ stage of treatment as they say, which was the 5mg/kg treatment every 8 weeks. I stretched it out to every 4 weeks, and eventually had to be upped to 10mg/kg every 5 weeks and still found frequent discomfort. After 2 years of treatments and against doctors wishes, I too decided to remove myself from the infusions when my weight hit 85 pounds and I still was in almost constant pain when moving.
    I have been off of Remicade for almost 2 months now, and have never felt better. My hair is finally starting to thicken, and I’ve gained 15 pounds since stopping the treatments. I decided to look into natural medications, and recently received my MMJ card. I’m now using CBD’s as my form of treatment, with the occasional tylenol for arthritis as needed on my active days. I was extremely open minded to the idea of medical cannabis, and am thrilled to find out that all I need it some topical ointment and tincture to feel good as new.
    Being a horticulture major who hopes to go into Naturopathic medicine one day, it’s been incredible and very rewarding to read all of the stories about natural medications and holistic healing! Plants really can do the body a lot of good 🙂 Best of luck to everyone who is on Remicade or coming off of it to try something new. We’ll all find our preferred method of healing eventually!

    1. Allie,
      Thank you so much for sharing your story!!!! I’m so happy that you have found success and have weaned your body off the Remicade. I’ve heard a lot of positive results with medical cannabis. I have never tried it as a treatment but I find it interesting and a much better option than pharmaceuticals. Hope you are continuing to feel well.

  36. We just keep trying w/ these diseases. Why are the GI’S so
    On defense about remicade? Maybe they should know how it plays havoc eventually. Guess we can’t have it all.

    1. They’re not “on defense” about Remicade. They know the drug works for many people and their job is to treat their patients. Remicade has saved the lives of many people. Not treating Crohns is dangerous as it harms your body in the long run. Just because a drug has side effects doesn’t make it BAD

  37. Thank you for this post. I was diagnosed with Crohn’s back in 2006 and have been on Remicade now for 10 years. The past 3 years I’ve changed my diet and I’m very into health/fitness. I’m looking to stop Remicade and manage my disease with my diet. This blog and all the comments/responses has been such a great resource for me! I hope you are doing well.

    1. Hi Katie! Thank you for the comment! Glad you found the post helpful! I’m glad to hear you have found success in health/fitness and changing your diet. Thanks again for checking out my blog!

  38. Hi Erika! I have been on Remicade for over 4 years now and am looking to stop getting infused. I feel it is hurting me and not helping me anymore. Could you please email me your plan of action so I can do the same!! Thank you for caring for others and sharing!! May God bless you!!

  39. Hi, I’m so glad I found you. I have been on Remicade for progressive RA for just about 2 years, every 6 weeks
    My RA dr. just informed me (when I asked) that I will be on it indefinitely. Im not happy to hear this, physically or financially.
    I would love to be drug free. I have felt some better but I wonder iif most is due to my antiimflamitory diet I have been following.
    Do you recommend weaning off remicade, and what kind of diet recommendations can you give me
    Thanks so much.

  40. Thank you for your uplifting post. I’ve been on Remicade for 10 years now due to my ulcerative colitis. For the first few years I felt great, without a worry about my UC. But 3 years ago and on, I started feeling some of the symptoms come back, I was also getting sick a lot and suffering more from my seasonal allergies.
    For the past year I’ve been working with a dietician to help control my UC with food. I’ve been feeling more energetic, especially when my last colonoscopy showed I have a “normal colon”. But my GI doesn’t want me to get off the Remicade, even though I’m healthy on paper.
    Your post has cleared up my suspicions more, I think Remicade is making me sick again. I started an aloe vera tea treatment with mint leaves to help supplement my system and in turn let go of the Remicade little by little.
    Wishing you well!

  41. I have UC, Brad flare up s that steriods wouldn’t touch, so Dr said Remicaid was necessary. That was 6 yrs ago, been in remission ever since. Im spaced out the most weeks that’s allowable, every 15 weeks. My life as normal out weighed the side effects which I have only a few, so I continue. Good luck to everyone, its a personal decision. There’s alot of worse things.

  42. I’m tired of the insurance and medical industries. I’m going to have to tell my GI that I want to stop the Remicade infusions and wean off the 6MP. I know he isn’t going to like it. But it’s my body.

  43. Hi

    All these drugs are poison!

    Long term effects…..organ failure.

    Please don’t kid yourself and seek alternative remedies.

    Best Regards,

    A Wise Man

  44. Hi, so glad I found this. I unfortunately was on Remicade throughout my 2nd pregnancy & my daughter has some low functioning immune system problems low igG & other health issues. I don’t know if these are related to Remicade & have trouble finding info on kids as they grew. If you know of any resources I would appreciate it. I myself did not figure things out until Humira almost killed me. I have Ankylosing Spondylitis but it really is what you eat! And how you move! I eat almost no meat, vegetables every day. Hyaluronic acid helps with joint pain. Medical marijuana not available for arthritis in my state. I am off arthritis meds, trying to heal my liver, stomach, intestines. Have pain & stiffness but better overall. I am not doubled over with abdominal pain or fighting pneumonia constantly. I was wondering what supplements were helping you? If you had immune booster advice. I have had to find answers on my own & it sounds like you had success that way too. My last visit with my rheumatologists was literally 5 seconds & he doesn’t even know I’ve been off Humira almost 2yrs. He just wasn’t listening, so I’m fixing myself. Any information is great for me to look at. Thank you, very glad you are doing so well. Carolyn

    1. Thank you for your comment! I’m sorry this is so delayed. I hope you are doing well. I currently only take a probiotic and digestive enzymes. As far as immune booster advice…I’m not to sure what to recommend in that department. Do you have a homeopathic dr in your area? Thanks again for the comment and hope you are feeling great.

  45. Hello, i. So glad i found this. On verge of starting remicade that my Dr has been pushing upon me. I have chroma disease and recently have an intestinal fistula. I experience weight loss and abdominal pain but my main symptom is constipation. Do i have any alternatives i do not like the side effects of remicade

  46. Hello, I have been on Remicade for the past almost 2 years. I am 23 and have had Crohns since I was 18. I started putting on weight a few months after I started Remicade. On top of that my ankles are starting to swell and I spoke with my doctor and he assured me it has nothing to do with the Remicade. I know my body. I have never put on weight like this. I would like to wean myself off of Remicade as well. How many infusions did you get of a lower dose before you stopped? I know everyone’s body is different but I’m just curious.

    Thank You!!

    1. Thank you for the comment. I’m currently back on Remicade after being off it for all those years. When I first weaned off, I had been getting my infusions for a few years. I probably did about 6 months to a year on a lowest does of Remicade before I stopped my infusions all together. I was working with a holistic Dr and doing major diet cleanses to help with the weaning process. Yes, I agree that every body is different and what works for me might not work for everyone else. I have the blog just to share my story and experiences. 🙂

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