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Crohn's Disease Forum » Your Story » Considering to quit remicade


08-16-2017, 04:47 PM   #1
nomis.1
 
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Considering to quit remicade

Hi guys. I am new to this forum. I have suffered from Crohn's disease since I was 12 years old, (today I am 22). It has been loads of ups and downs, i've had a tube in my nose four times because I could not eat at all, I only went to toilet dozen of times.

Although remicade keep my stomach good, I have suffered from side effects such as extreme tiredness, depression and anxiety. I want to quit remicade and "cure" my condition with healthy food and diffrent kinds of juice with good fruits and herbs.

What do you think about this?
08-16-2017, 05:09 PM   #2
ronroush7
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I think you should stay on the remicade. You could cause the disease to get worse . You might want to have your blood checked to see if you are anemic. You also might want to see someone professionally about the depression and anxiety
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
08-16-2017, 05:30 PM   #3
nomis.1
 
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I think you should stay on the remicade. You could cause the disease to get worse . You might want to have your blood checked to see if you are anemic. You also might want to see someone professionally about the depression and anxiety
Mate, have you seen all videos of youtube? Search "cure Crohn's disease" and there's a guy that "cured" his disease with only juices with loads of vegitables, fruits and other good stuff, also good diet.

I mean, remicade is extremely strong and I am so afraid of my future...
08-16-2017, 05:35 PM   #4
ronroush7
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Talk with your doctor about your concerns about Remicade. I went off Remicade on my own and ended up having trouble with the Crohn's disease.

08-16-2017, 05:43 PM   #5
Scipio
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The risks from remicade are real but they are small. The risks from uncontrolled Crohn's disease are huge.

The internet is full of people who "cured" this or that serious disease with all manner of unorthodox treatments. And I wish them well. I don't begrudge anyone whatever works for them. But unfortunately the vast majority of those "cures" just don't work. There is nothing so odd or nonsensical that someone somewhere hasn't tried it and reported that it cured them of something. I prefer to put my trust in medications that are backed by scientific clinical trials performed under controlled conditions by real doctors.

Some of those "alternative" treatments may offer some help, but when I use them I use them in addition to proven treatments not in place of them.
08-16-2017, 08:22 PM   #6
cmack
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I agree with everyone else. I would use healthy lifestyle choices in addition to your current medications. Serious damage could occur very quickly if you were to quit remicade. As Ron said, "You might want to have your blood checked to see if you are anemic. You also might want to see someone professionally about the depression and anxiety." Be very careful, you don't want more trouble rather than less.
08-17-2017, 06:25 AM   #7
produff26
 
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Some of those "alternative" treatments may offer some help, but when I use them I use them in addition to proven treatments not in place of them.
That is the soundest piece of advice anyone can give you!
08-17-2017, 10:55 AM   #8
Bufford
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Stay on the Remicade as the symptoms you mentioned may not be related to the medication. I was on it, but I had to go off of it for life threatening symptoms that included Lupus like side effects. I would seek a doctor to help alleviate your depression which is quite common for those of us with Crohn's.
You can do things yourself and explore alternative therapies and there are many, as well as experiment with diet.
08-17-2017, 11:25 AM   #9
my little penguin
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As a parent of a child who is dx at age 7
I would hope you are seeing a therapist who handles chronic illness
Most GI dept have one on staff
Tiredness /anxiety and depression all go hand in hand
Most kids/young adults with chronic illness including ibd are extremely high risk for anxiety /depression regardless of meds
Being constantly sick is hard
And very hard for someone to grow up with
And may have nothing to do with remicade

Did your GI tell you remicade was causing these issues ?

Did a therapist /psychiatrist tell you remicade caused these issues ?

Crohns in kids /young adults tends to be very agressive so getting it under control and keeping it there is very hard

We have tried diets/exercise but in addition of meds
Not instead of

Ds has been on biologics including remicade for 7 years now
Without any signs of anxiety or depression

Good luck
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08-17-2017, 06:48 PM   #10
Magnolia24
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Whether or not to stay on Remicade is a big and personal decision, and I hope you communicate with your doctor before you make it. If Remicade is keeping your illness in remission it would be a shame to lose it as an option - I know that it is often not possible to return to a biologic after stopping it. I also understand not feeling good about the other effects of this drug. I have chosen to avoid biologics so far and am currently feeling well with a disciplined diet and Pentasa. I don't know if this will always be the case, and I don't believe I have "cured" my illness, but I do think diet plays a huge role in keeping me healthy, and whatever decision you make about the remicade, I highly recommend looking into dietary options. For me, a slightly modified version of the specific carbohydrate diet is working well. You might be interested in reading about SCD, Paleo, and low FODMAP. I've found http://scdlifestyle.com to be a helpful resource and good starting point.
08-19-2017, 05:21 PM   #11
OleJ
 
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Hi nomis.

I agree with the above, keeping the inflammation in check with whatever drug nessecary is essential. I also very much agree that nothing stops you from trying other remedies, as long as they are not harmful. The reports you read from individuals who tell about their benefit from alternative treatments (non-FDA/ not used in hospitals-treatments) are called "anecdotal". In the medical community this kind of evidence ranks lowest, below results from real studies- and that is actually a good thing.
This is what allows us to get effective treatments, that the doctors know will likely give the best possible outcome.

Even though the effect of alternative treatments have not been proven to work in sufficiently powered studies, that does not necessarily mean there is no chance they will work for you. Except if studies have been made that specifically conclude that a given treatment is ineffective. In that case it is wise not to waste any time and effort trying it out.

So what you will have do if you wish to try something in addition to Remicade, is to find out yourself what kind of alternative treatments that are available (and will cause you no harm) you think seems most likely to be worth trying.

A good advice is to see if any studies have been made - even though a treatment has not made it into the common consensus among doctors, does not mean it has not been shown to have an effect in one or more studies. The effect is just not well enough established that doctors can use it.

An example is the IBD-AID diet. Studies exist that conclude both may be helping CD symptoms (study 1): IBD-AID)
(study 2: IBD-AID)

I have had CD for 18 years, starting when I was a teenager, and Remicade helped me tremendously throughout college / university. But when I got a serious kidney infection twice (maybe as an allergic reaction to remicade, maybe due to my suppressed immune system, maybe a manifestation of CD...?) I quit Remicade and started making profound changes to my diet and lifestyle. Importantly, though, I kept following my doctor's advice and took Prednisolone for a while until inflammation settled down. I also started Methotrexate. Only after about six month did I taper off prednisolone completely, and after 1,5 years I am now slowly tapering Methotrexate.

Here is what I have done - remember this is just another anecdote, so don't assume it will nessecarily work for you too).


1) I follow my GI's prescription of Methotrexate (MTX), and in agreement with him I am slowly tapering. From 15mg/week and now 10mg/week, I hope to reduce to 7.5mg/week soon. The efficacy of MTX against CD is well established in the litterature.

2) I take a daily Vitamin D3 supplement, 35uG /1400 UI. Several studies conclude that Vit. D3 help manage CD

3) I ride my bicycle at least two-three hours a week, exercise has been / is currently being researched as a way to diminish CD symptoms, for various reasons.

4) I consume no dairy at all. Also no butter, and no milk hidden in processed foods and bars. No ground beef or other meats from dairy cows. Dairy is the primary source of exposure for humans of a mycobacterium called MAP, and there is increasing evidence MAP may be causing CD . Bear in mind though, that this is controversial, and reports of improvement following anti-MAP treatment are anecdotal.

5) I am eating only non-processed, natural foods. Food additives have been found to aggrevate IBD.

6) I followed the IBD-AID diet for two years. Since I have now no longer any CD symptoms I started eating other food items too. I eat very little meat - apart from a little organ meat from grass fed beef cattle, chicken and fish, I mainly eat vegetables, including fermented ones, fruits, nuts, whole grain, and seeds.
I make sure to include prebiotic foods such as jerusalem archichokes that feed the good bacteria, so that they can perform their duties of protecting the gut barrier. Also probiotic foods such as kimchi and sauerkraut to get good bacteria into my gut. The little grain I eat is organics and whole-grain. Mainly oats and homebaked ryebread made with sourdough.
This TED-ED talk is an excellent explanation of why the above above could be a good idea for us with a CD diagnosis.
More often than not I have steamed or cooked vegetables (often leftovers) for breakfast.

7) As a sweetener I use only unheated honey. No artificial sweeteners or refined sugars.

8) I strive to get 7,5 - 8 hours of sleep every night, to give the body a chance to restitute properly. If I can not sleep that long it is an indication that I am stressed, and I need to change something.

9) I never smoke. It is well established that smoking aggrevates CD. In one study Nicotinic acid has been seen to promote MAP growth.

10) I have my calprotectin (CP) levels checked regularily. In my case elevated CP always precedes a flare, so knowing the levels is important.

11) I live as stress-free as possible. Stress puts the body's normal function in a stand-by mode which is very unhealthy long term. If I get stressed, I make sure to get a long period of relaxation and restitution afterwards.

12) I never drink more than two units/drinks of alcohol per day - and very rarely all together. Same with coffee.




Last edited by OleJ; 08-19-2017 at 05:59 PM.
08-19-2017, 05:29 PM   #12
#sam's mom
 
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HI, I am new to the forum. My 12 year old son was diagnosed with fistulizing crohn's 3 years ago. He was on Remicade every 6 weeks for 1 1/2 years but unfortunately it was not the magic treatment it is for so many, but he felt pretty good. When the fistula had not closed the GI took him off and tried Humira (on which he was so sick! high fevers and severe crohns symptoms) then 6mp (again no relief and sick all of the time) doctor put him back on Remicade (thankfully he had not developed antibodies) and he has been on it at maximum dose every 4 weeks and methotrexate and folic acid for a year. Not only has his fistula not healed, a recent MRI reveals a small second fistula. Overall we are VERY thankful that he feels good most of the time despite his disease being so bad - he leads a normal and full life! Every year we see the surgeon about a possible Seton but he says since the fistula is not draining or bothering him the surgery could be more painful and if we could just get him into remission the fistula would heal.

He has a colonscopy this Thursday and his GI is pushing to change medication. She wants to combine 6mp and the Remicade, which we won't do because of the heightened risk of cancer in pediatric boys so her second choice is Stelara or Entyvio. We are VERY reluctant to switch because at least on Remicade he has maintained a good quality of life (able to attend school and play some sports and perform in acting/plays) even though the disease is not under control. Based on how sick he was off Remicade 70% relief seems better than the other possibility. We are also concerned because Stelara and Entyvio have not yet been approved for use in pediatric and thus the risks are not known. (let alone the possible costs) Please respond if any of you or your children have had similar experiences or have switched from Remicade to Stelara or Entyvio? THanks, #Sam's mom .
08-19-2017, 05:37 PM   #13
OleJ
 
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Hi Sam's mom. I am sorry to hear about your son's problems.
I am afraid I don't know anything about what you are asking, I just wanted to suggest you try to re-post in the Parents of Kids with IBD - forum. Maybe other parents will respond there?
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