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Crohn's Disease Forum » Treatment » Remicade/Infliximab » I want off Remicade!


07-12-2011, 10:26 PM   #1
Fog Ducker
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I want off Remicade!

Hi guys!
So as some of you may know I have been on remicade for almost four years now, it had been working very well.
Over the last 8 months or so I have been doing an insane amout of research into health, and how what you put into your body can affect you. I started taking the right supplements, following a Paleo diet and eating only real food. I have seen my health drastically increase like never before! There have been some trial and error along the way (like nuts, I cant eat) but I believe I have it figured out.
Everyone know the dangers and side effects of Remicade and when I was really sick, I was willing to take those risks, but I dont want to anymore! At the time it was right for me I looked at it like "Better quality of life now, for a shorted life later" But since getting my diet figured out and being what I would say is 90% again, I want off the Remicade!

The other funny thing is I am on a double dose of Remicade every six weeks, and it seems like as I get into that 5 and sixth week my health is at a peak, and then after the infusion its like it declines a little again. I know that is weird and a little backward to how it should be, but that is what I have noticed.

I have called and made an appointment with my GI, but it isnt till the middle of August. My next infusion is next week, and I REALLY dont want to go! I honestly dont want any drugs in my body anymore! Some of you may think Im being stupid, and you may be right, but I have adopted a "your body does everything for a reason" type attitude and I believe medication only treats the symptoms not the cause! I know my GI isnt going to be happy, in the beginning he told me "diet and food have no affect on Crohn's" and "probiotics are a waste of money!!" I am living proof to the contrary! So I dont really value his opinion!

Im sorry for such a long post but if you are still with me, I appreciate it!
So here's my questions, have any of you stopped taking your Remicade? What was the process? Did you taper? Or stop cold turkey?

I appreciate all of your comments and thoughts even if they are just to tell me Im an idiot and enjoy the Remicade!
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Dx UC: 2006. Dx CD: 2008
Current Meds: Remecade 800mg evry 6 weeks, Methatrexate 7.5mg once a week oraly, Asacol 800mg 3 times a day.
07-13-2011, 03:13 AM   #2
davidr
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I never stopped taking Remicade, but I did stop taking Imuran (I had been doing combo therapy) because I felt so good and I was worried about my long-term health. Then, 6 months later, the Remicade started losing its efficacy and I ultimately had to re-do the induction course and start up the Imuran again.

The choice to quit is yours and yours alone to make, but do keep in mind that once you go off Remicade, you might not be able to take it again if you have a flare.
07-13-2011, 06:02 AM   #3
Dexky
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Brian, as a non-sufferer, I can't fault your desire to get off meds and I'm sure you've thought long and hard about this and are aware that you may not be able to return to Remi. I'm just curious if you're still on the metho and the Asacol as well? Do you intend to stop all these meds at the same time?
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07-13-2011, 06:50 AM   #4
Fog Ducker
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I am off the asacol, I haven't taken my metho for a couple of weeks, mainly because I keep forgetting, maybe a little subconsciously on purpose. Anyway I I want to be off all medications!

I am aware that once I go off I may not be able to start again, but that doesnt really bother me.
07-13-2011, 03:40 PM   #5
SdN
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Have you thought about decreasing the dose and/or frequency before dropping it altogether? Maybe you should taper off and see how your body responds to that.
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Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
07-13-2011, 06:25 PM   #6
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^^That's probably a good suggestion but it would require the GI be on board to reduce the Remi gradually... Unless you just rip the IV out at changing intervals each time. I don't know you Brian, but from your username and avatar pic, I could envision that.
07-13-2011, 08:03 PM   #7
aliciars
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I understand wanting to get rid of a med. But slow down a minute, and think - middle of August is what, 2 more infusions? Ask at that point if you can go down in amount and frequency. I've just read too many horror stories of people that have gone cold turkey and would hate for you to have a set back when you are doing so well. Patience dear friend - this disease is about patience. UGH UGH UGH!
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07-16-2011, 12:30 AM   #8
Mountaingem
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Hi Fog, glad to see you're back! First off let me say I'm so happy to see you're doing so well!

To answer your question, yes I've gone off Remicade twice. I totally understand where you're coming from, I feel the same way. Here's my experience:

The first time I quit I kept the Methotrexate at a higher dose, which worked OK until I had major stress in my life trigger a flare. The Remicade was able to get it under control within one infusion.

I took the lowest dose-200 mg. I felt great for about a year, and decided to try to go off of it again. I was off it three months, then I had the mother of all flares-Crohn's returned with a vengence!

It was worse than I had ever had before-complete stiffness and immobility in all major joints, ulceration in the entire bowel, large and small, bleeding and anemia, fistula opened and became infected-the works. It took IV prednisone, oral prednisone, Pentasa at flare dose, Methotrexate 25 mg injections weekly, and triple dose Remicade to break this flare, which hasn't entirely given up yet.

I'm not telling you this to freak you out, just sharing my experience. In my opinion when I go on and off the meds, it seems like Crohn's comes back even more aggressive than before. I think for me, even though I totally get the reasons for going off the drugs, in the long run it may be more detrimental to have to take such massive amounts of meds to get it under control after a period off the meds, than to just take a lower maintenence dose.

Maybe your doctor would be willing to taper you off slowly, or give you a much lower dose, or even space your infusions further apart. Then you can get an idea of how your body will react without triggering a flare.

Whatever you decide, I wish you the best-congrats on your good results!
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07-17-2011, 01:42 PM   #9
Lydia
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If I was in your shoes, I would stop the remicade, only because I have had drug free remission before. I want to stop some day but I cant right now because I get break through symptoms before the next infusion, so in my case I know I would flare right away.

A good way to start is to increase the length between doses and see how you feel. Increase one week at a time until you get back up to 8 weeks.
07-17-2011, 10:10 PM   #10
Fog Ducker
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Thanks guys for all the replies and input. I have decided that you guys are right and I should calm down a bit and not rush this. I do still want off asap but I will do it the gradual and safer way. Going to talk to the doc and get him to reduce the amount and lengthen the interval and see how I do with that.
I am still confident I can and will be medication free one day, but you guys are right I would hate to have it all blow up in my face. ill let you know how it all goes.
Thanks guys!!
-Brian
07-18-2011, 08:39 AM   #11
SdN
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Right on man good luck to ya!
07-26-2011, 07:14 PM   #12
kazul33
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Brian,

I've done similar to what you are talking about. I was on remicade from 03 to 06. I went cold turkey. I was only on remicade at the time when I quit. I was fine for about 5 years, no big flares or crazy hospital stories. I drank, smoked, and took alot of ibprofen. I entered a very stressful school situation (Was going for my masters) and was starting a new job. I started with a slow flare, that ended up in me having ulcers and hemorrhoids in my colon.

I started back up in May with my first infusion, everything went okay then. I just tried having one yesterday and I had a bad reaction to it. They tried to restart me twice but I kept having breathing problems. I'm all for jumping off the medication train and going with the cave man diet, but at one point I was waving the white flag begging for medication.

Doctor's that think diet/environment has no effect on crohn's is a load of crap. I say experiment with food and see how well you do, but just know going off remicade has it's own repercussions as well.

Here's to you hoping you make the right choice.
08-03-2011, 08:40 AM   #13
moogie
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My opinion is simple. Drugs are there to help your body fight off something it cannot on it's on.

I think there is no Diet in the world that will stop this plague from ever coming back you will always have flare ups if you have no drugs to help the body that is why you need them to help you stay healthy.

If you go off of them I have a feeling at some point you will be sorry. Like I said before the diet and the drug combo makes you feel great. It's not just the diet.

I think you should keep the the medication and just be happy you are feeling so good.
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DX - CD summer of 1987
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Getting 5mg now. full dose. cost 5500$ )
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3 resections
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On Remicade Since April 2011 I am alive again!
08-03-2011, 09:41 AM   #14
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Hey Brian,
Obviously we all have different opinions on the matter. I'd say do what you feel is right for your body, and treat meds as a safety net.
It seems like you are on track with a good diet, so that will help.
Good luck and keep us posted.
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08-03-2011, 12:54 PM   #15
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I have been on it now for 5 yrs, and it is also losing its affect on me, but I have not experienced my crohn's without the remi for 5 yrs now, so I honestly would be concerned with how my crohn's will behave without the remi. I have talked to friends with crohns who have never been on remi and there was food that I could eat (and I believe because of the remi) that would never dream of eating. So my question would be....if you have thought of that?
08-03-2011, 01:07 PM   #16
CrohnsGuy
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I'm living proof that you can be drug-free with Crohn's disease by maintaining a strict diet and paying attention to all aspects of your health (i.e. mental, spiritual, emotional, physical). Might want to read about Jordan Rubin as well. That being said, I would take your time working down off your meds and not rush the process. After all, this disease didn't show up overnight and it won't go away overnight either.
04-05-2013, 11:35 AM   #17
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Brian, I am right there with you on that one!

I was recently diagnosed with Crohn's & UC last October. I felt like it came out of nowhere. One day, I was feeling fine and enjoying my normal life, and the next thing I know, I'm living in the hospital for an entire month! It got so bad, that I was "fatal", and my GI doctor put me on Remicade while I was in the hospital. Within the next day, I felt like I was back to normal and ready to go home. Long story short, Remicade really was the "miracle drug" for me and I forget all the time that I have Crohn's.

I will have been on this drug for 6 months at the end of this month. I am and have been from the start on the lowest dose. Remicade is the only thing that I am on (thank God), but I don't want to be on it anymore either. The more research I do, the more I get sick to my stomach knowing that this is running through my body. I have been spending a lot of time at Barnes & Noble and looking online for diets and natural inflamatories that could help so I can eventually get off of Remicade. Brian, I think that's awesome that you have been able to figure out the diet that works for you. I have been trying to figure out mine, but I really haven't noticed any problems with foods besides tomatoes being too acidic and nuts not agreeing with me. It worries me that Remicade has just been masking the symptoms and I am not able to tell the difference.

I know that it's a very low chance of ever being able to get back on Remicade after quitting, but what are your guys' thoughts on switching to a lesser potent drug if I didn't want to be on this anymore? Also, Brian- which foods have you noticed bother you? Just curious because I am still trying to figure this thing out!

Thanks for any advice!
04-05-2013, 11:42 AM   #18
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I just noticed the dates in the previous posts and realized it was almost 2 years ago. I would love to know if anyone had any success stories regarding discontinued use of Remicade?
04-05-2013, 12:11 PM   #19
kiny
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I stopped after a few months, long ago. Yes you can just stop cold turkey, but you need to tell your doctor and you need a plan.

If you don't want immunosupressants, that's your choice (for me it wasn't a choice, my lymphocyte drop too low on immunosupressants, I had to go off immediately), but you need an alternative, antibiotics, or other therapy.

Diet is not a good solution, I don't think even EN is a solution even though it's nice because it's so nutrient dense, you need something to fall back on and you need doctors supporting you.

It's your life at the end of the day, no doctor can tell you to stay on something if you don't feel happy about it, but make sure you have fall-back treatment, and make sure you have doctors who support you.
04-05-2013, 12:12 PM   #20
Starlight
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Remicade gave me my life back. I've been on it for almost 7 years and as long as it keeps working and my insurance covers it, I plan on staying on it for as long as I can. For those of you who wants off it even though it's working, I suggest you think very very hard before making that decision since you are highly unlikely to be put back on it again if you start flaring again.
04-19-2013, 08:35 AM   #21
Fog Ducker
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Starlight, I was on Remicade for 4+ years and at the time it was the right thing to do. It did give me somewhat of my life back. But once I did some research and discovered the power of food, and how people have not just put themselves into remission, but actually consider themselves cured, there was no going back!
SCD and GAPS diets have been the best things ever! Even when I was on the Remicade I had to watch what I ate, and paid for it when I didnt. The only difference now is I cant bounce back quite as quickly as when I was on Remicade, it takes a few weeks instead of days. But I think thats a small price to pay to avoid the potential side effects. I have also noticed my health and general well being is 10x better than it ever was on any of the numerous meds I have been on including Remicade! To be honest its the first time in 8+ years Ive had a solid shit!
Dont get me wrong it is exremely tough some days to stick to such a strict diet, but to me its worth it. I do still have slip ups though, just recently I had a few too many of those "ah I can get away with it" moments that sent me into a little flair, but that is due to my own stupidity, and I think its a way of reminding myself why I am so strict all the time.

I dont by any means think this way is for everyone, I just want everyone to do some research and educate yourself. Dont do what I did for so long, and stick your head in the sand and put blind faith in your doctor. At the very least read through the paperwork that comes with the Remicade, especially the side effects, there are some big, scary words in there!
04-19-2013, 09:14 AM   #22
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I agree the less meds the better. I've constantly fought to make sure that if my doc's prescribing something, I need it because I hate taking any medicine. Personally, I've been healthier than my family counterpart who also has CD, near my age, but drinks, smokes, and who knows what kind of diet. I spent years cutting back on foods that bother me, finding alternatives to prescriptions in natural food and vitamin stores, and trying to stay fit and active.

Unfortunately, right now none of that stuff is working and my doc tried Humira (which worked for Crohn's but had side effect), and now wants to try Remicade or Imuran. I am also leary of these treatments, especially since I had side effects from Humira, but at this point, I just need to feel better again.

But everyone is different and you should do what's right for you. I have found different things work at different times, and flares can be random. However, there is an importance with tapering and working with your doc. If they don't want to work with you and what you need, you should find a provider that will.
04-19-2013, 09:36 AM   #23
FrancisK7
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First of all, please read this before making any decision:
http://www.ccfa.org/assets/pdfs/risk...transcript.pdf

Second of all, you have no guarantee your lifestyle changes will keep you in remission. What kind of UC/Chron did you have? Was it limited in scope, or pancolitis?

Some people have mild flare-ups and the simple act of reducing stress on the colon by ingesting easily digested food is enough to calm things down.

You do understand your disease is SYSTEMIC in nature, the result of one of many genetic mutations in your DNA, which caused your entire immune system to malfunction? The cellular involvement in inflammatory diseases is massive.

Probiotics and the paleo diet do not fix that. They just reduce stress on your intestine or help digestive enzymes. They have nothing to do with your immune system.

If you stop the Remicade cold turkey and end up flaring in six months, you may have developed more antibodies and Remicade will become ineffective for the rest of your life.

I believe medication only treats the symptoms not the cause!
Why do you believe that? It's not true.

Do you plan on keeping your other meds if you stop remicade?

Edit: I was replying to Cristy87 in case it's not clear, as I noticed the OP's post was years ago.

Last edited by FrancisK7; 04-19-2013 at 10:18 AM.
04-19-2013, 12:17 PM   #24
Fog Ducker
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Francis, yes there may be genetic mutations but if they can mutate towards disease then it is naive to think that they cant mutate back to normal or somewhat normal. How do probiotics and diet not have an effect on that? How do they have nothing to do with the immune system? There is new research coming out almost daily it seems, saying that the gut is the source of the immune system. Its also very naive to think that what I am putting into my gut wouldnt have an effect on it either negative or positive.
Diets like GAPS and SCD have been proven to work to reverse not just CD and UC but a whole list of other diseases.

I believe medications only treat the symptoms not the cause.
Why do you believe that? It's not true.
How is it not true? If i have ADD is it because I have a deficiency in Ritalin? Or maybe something else.
If I was banging my head off the wall and went to the doctor and said I have a headache, he would give me some aspirin and I go home and continue to bang my head off the wall, I dont have a headache anymore, but have I solved the cause or just treated the symptoms??

Can you name one pharmaceutical that treats the cause of something??

Dont get me wrong though, I do believe doctors and medication have their place and time, but I think more often than not they are not needed and do more harm than good.
04-19-2013, 12:36 PM   #25
FrancisK7
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There is new research coming out almost daily it seems, saying that the gut is the source of the immune system.
I'm happy you are feeling better and as a fellow Canuck I am even more happy.

However, from your posts, it is apparent you do not understand the human body at all, and I don't think you are doing yourself or other people who are sick a service.

With all due respect, the quoted statement is completely wild. I have years of studies in biochemistry, including three in medical school, and I can promise you the genesis of the immune system does not stem from our GI tract.

I am not sure where you get your information, but as much as humanly possible, you should always cross-reference studies on NCBI (http://www.ncbi.nlm.nih.gov/pubmed/) and double check the data in other studies to see if it holds.

I very much doubt the research you mention has any credibility since it defies the very basics of biology.

GAPS and SCD have not been proven to reverse CD or UC, that is utter hogwash. If we knew how to reverse mutations on alleles, cancer would be cured by now. They've been shown to help reduce inflammation by reducing stress on the GI tract, that is all.

You are the master of your own body and you are master of what you put in your body, that is a fundamental right as guaranteed by our Charter.
However, some people are better qualified than others to make these sort of decisions, and decisions should always be informed. You're not informed very well, so this puts you at risk. Be very careful.

I hope you continue to feel well!
07-24-2013, 02:35 AM   #26
AJC - Australia
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Well done 'Fog Ducker'! I have never posted anything on here...had crohns since i was 18, 3 surgeries etc. I am currently on Remicade and have been for 5 years......i feel like Fog Ducker i guess...........been getting into the good food, SCD and GAPS and other diets...eating well and putting on weight and want to stop smashing my body with heavy drugs. I am sure there are loads of crohns people who are in a similar boat, but not many go on these forums. Personally, i dont like health forums; generally whinging people needing love and sympathy and that doesnt wash with me....YES, life sucks with crohns, but get on with it. Do another poo and keep rolling. Find something that works for you, and all that. Ahhh, getting off Remicade, i never thought it would be so scary. Got a meeting with me specialist tomorrow, see what he says. He is a good fellow. I wonder how many cronies were bombarded with anti-biotics as children? I rekon the gut flaura has a lot to do with health.....i might write something on another 'thread'. see ya. from australia.
09-20-2013, 07:45 PM   #27
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I know you posted this a while back, but it speaks to me as I feel the exact same way. I have been on remicade for about 3.5 years and really want to go off. I believe in the power for nutrition and already eat very well for the most part - remicade does allow me to eat some junk food that I think I would have to quit if I go off it, but I think I can do it. I am scared though. I was just so sick and the thought of being that way again scares me to death! The remicade scares me too though....I had issues with sinus infections last winter that I have never had before, and am worried about this coming winter's cold/flu season. Also have been experiencing muscle pain that I am not fond of.
How are you doing now? How careful do you have to be with your diet? Thanks! You are inspiring me!
09-20-2013, 08:27 PM   #28
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I would be curious Fog Ducker if you get regular Fecal Cal tests done? My son felt great too, we were seeing a GI in Michigan and thought he was in remission. Once we moved to Cincinnati and switched GI's he started to get Fecal cal testing done. His levels were 10 times higher than normal. Showing even though he felt great, had normal blood tests, he was getting inflammatory damage in his GI track. It might have taken several years to show up, but it was happening.

My only point is, that you might feel great for now, but you can be getting serious damage from untreated inflammation. If it were as easy as changing your diet, trust me we would be doing it.

I don't see is as putting blind faith in a doctor. These Dr.'s have been treating people for years and they see what happens when people make decisions to go off their meds. They were around before drugs like remicade when they had little to offer their patients.

I just think if people are going to go off their meds and use diet only as treatment that it is very important to have inflammation constantly monitored before recommending such a lifestyle to others.
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05-25-2017, 12:07 AM   #29
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I know this is an old post, but for anyone who bumps into it now, I, too, am using diet to reduce my inflammation, and it is working for me. I have Ulcerative Colitis and was able to go off Remicade/6MP cold turkey once I had achieved remission. When I tried postponing the Remicade infusions, I would get calls from my nurses and GI warning me that the inflammation would come back. I ignored them.

As for doctors who say that Remicade won't work the next time if you go off it because your body will build up antibodies to it, my body already had built up antibodies to it when I was on it. My GI added a bit of 6MP to reduce the antibodies, which worked. Therefore, he couldn't use that argument with me when I went off Remicade and 6MP.

I'm not saying that it wasn't hard to get off Remicade and 6MP. My gut was doing very well. I had no gastrointestinal symptoms, absolutely none. But I got extra intestinal inflammation of the soft tissues. My body was in excruciating pain. I had trouble moving. I saw my PCP and found out my Sed rate was very high, which meant I was having systemic inflammation. I saw a rheumatologist who said the inflammation was probably related to my Ulcerative Colitis. I didn't see my GI because I knew he would just put me back on Prednisone or Remicade and 6MP.

Every day, I followed the Autoimmune Paleo diet, and the extra intestinal inflammation went away VERY slowly. There were some days that my inflammation and pain would worsen slightly and I would become depressed, wondering if the inflammation and pain would ever go away. It ended up taking six months to become inflammation and pain free.

Although I stopped Remicade and 6MP cold turkey, it may be better for others to reduce the Remicade and 6MP slowly. I stopped cold turkey because I was getting side effects. I was on a double dosage of Remicade every four weeks plus a daily oral dose of 6MP. I could really feel the damage the medications were doing to my body. So I got off them as soon as I went into remission.

Don't give up easily when trying out the SCD, GAPs, or Autoimmune Paleo diet. It takes awhile for these diets to work. I tried the SCD diet when my colon was flaring, only I thought it wasn't working after trying out it out for only a month because Elaine Gottschall said that we should know after a month whether or not the diet is working. I was still flaring badly, so I stopped the diet. Later, I found out that I couldn't have dairy, even fermented dairy. I had been having homemade SCD yogurt on the SCD diet. So even though most of the diet was working, the homemade SCD yogurt was making it difficult to realize it.

If you are worried that you may be having inflammation when you aren't having any symptoms, then you can get tested. You don't need to be on medication to make sure you aren't having inflammation.

As for people who say, diet doesn't work, "People who say it cannot be done should not interrupt those who are doing it." ~George Bernard Shaw

Also, almost all doctors know only what they were taught in medical school, which teaches how to diagnose and prescribe medications. It doesn't teach about diet. Doctors tend to reverberate what they were taught, including diet doesn't matter; however, some doctors are now starting to realize that diet does make a difference now that some of their patients are turning to diet and having positive results.

Last edited by Subduedjoy; 05-25-2017 at 01:55 AM.
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Crohn's Disease Forum » Treatment » Remicade/Infliximab » I want off Remicade!
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