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Post Edited (GaryTheGriffon) : 11/9/2021 1:40:51 PM (GMT-7)

Why would you consider going off of a medication that is obviously helping you? As mentioned above, once you go off the odds are not good for resuming the Remicade again. The internet can be a good source for info, but in your case reading you can go off of it with no issues is completely wrong, this is the downside to the internet, a ton of garbage out there.

Your dr is the expert here, listen to her. I find it odd that you have treated with a dr for a year & you don't trust her judgment.

I believe you have some misconceptions on the odds of actually getting side effects from Remicade. Quitting the treatment that works for you just to spite your doctor seems rather foolish. Don't want to hear that "I told you so... when you flare miserably."

However, it is easy for all of us to say "I wouldn't do that." I prefer to throw some numbers at it, and cite some sources. Let's take a look at the risks versus benefits of Remicade. The odds Remicade will improve your Crohn's symptoms are 65%. The most concerning side effect of remicade is lymphoma which has odds of 6 in 10,000 (or 0.06 percent) when on remicade+concurrently on immunomodulars (Imuran/6MP/methotrexate), compared to 2 in 10,000 ( or 0.02 percent) odds for the general population to get a lymphoma. What happens to those who do get the lymphoma? 66% are able to put it into a remission. So that makes the long odds, even longer. It is hardly anything to loose sleep over. A lot of the recent research puts the lymphoma risks squarely on the concurrent use of immunomodulators, and that they are the ones causing the lymphoma and not the remicade.

The Crohn's and Colitis Foundation of America is the source for these statistics and has a real good risks versus benefits discussion, which is highly recommended:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Glad, really glad you are thinking about what is going into your body. That's hard to do when the tide is against you!

My husband's severe Crohn's was the reason the VA in Kansas City was able to bring Remicade into their system and treat patients with it. He started it, then we opted to go down another path and are incredibly thankful that we did.

Contrary to popular belief we found that Crohn's is not a life sentence. My husband has been symptom-free for three years now, has incredible energy, and is living a full abundant life ... at age 70. Sickness is not even a blip on his radar screen.

I like to believe people are well intended. Your doctor is saying what most doctors who are frustrated with this disease and desperate to help their patients say, "Remicade is a wonder drug." Pharma is what they are trained in so it makes sense that's what they know to recommend. Remicade does help suppress inflammation, but it doesn't get rid of the causes of inflammation, such as bacteria, parasites, viruses, fungi, chemical toxins.

My husband continues with three lifestyle components that support the body as it heals itself from things that cause inflammation. It all starts with eating foods that support wellness and avoiding foods that feed disease.

Keep on thinking! There are other options.

I don't know if I would be as comfortable taking the medications I'm on now had I not gone through such a hellish journey with crohns. It may just be something you have to risk going through too. If you have mistrust towards your doctor in any way you need a different one that you can have open conversations about what concerns you with the medications and your health.

Your doctor's motives are to do the best she can to improve your health and keep it well based on the evidence that's out there. In the end it is your decision but once you stop remicade you will not likely be ever able to take it again, which should be frightening since it is the most effective of the treatments out there. The risk of cancer from remicade is lower than the risk of colon cancer from uncontrolled inflammation. the uncontrolled inflammation damages the cells and promotes the mutations that end up as cancer where as the remicade just makes the body slightly less sensitive to catching the cancers that re naturally forming and destroying them.
I went through a similar path of fear early on in my diagnosis. Despite my efforts the crohns kept smoldering away and I ended up with prednisone at least once a year. I ended up with a painful draining fistula for 3 years. I took humira which suppressed the Crohns and the fistula healed. Then I had side effects from the humira about a year later and it was stopped. I went on a "medication vacation" and felt fabulous! I thought, how amazing I'll take care of myself and I'll be like all those other people who claim they were fine after they stopped meds! that lasted for several months but until I suddenly developed insane amounts of pain and and couldn't hold down food. turns out the Crohns was active despite the lack of symptoms. I ended up with a partial obstruction, that took several weeks of hospitalization, major medications including remicade to resolve and developed a pulmonary embolism which could have taken my life from the changes that constant inflammation can do to your blood.

When you go off meds you take your life in your hands, it could turn out fine like some of those above but that is rare and you must be willing to accept that there are some very nasty consequences to improperly controlled disease that far out way side effects for most.

Post Edited (Labradorite) : 11/28/2017 11:18:25 PM (GMT-7)