Do I really need Remicade?

[Km8367]

Diagnosed with crohns in 2012. started asacol, did not do a thing to help. went to azathioprine which did not help and also made me feel worse on a day to day basis. went off meds for over a year in which I felt overall good with a few bad days every once in a while. recent colonoscopy showed active inflammation and the doc wants to start me on remicade next month. my symptoms are very few and far between. I consider myself lucky in that I have never actually had a huge flare with bloody stool or extreme diarrhea. Major complaint is occasional stomach pain, nausea, and spasms. Remicade scares the crap out of me with all the side effects it can cause. The doc seems to think it is best for the long term to prevent the inflammation from causing problems down the road. I also had a polyp come back pre cancerous which he thought was very strange considering I am 27 years old and he believes this is not related to my crohns. Any advice?

 

[Clash]

Being asymptomatic is not a sign that no damage is being done. It is the inflammation inside that can cause irreparable damage that can lead to strictures, surgery and sometimes bowel cancer.

Even simmering inflammation can cause this serious damage. My son had simmering inflammation with no symptoms that eventually led to a resection. It is important to find a med that will stop the inflammation and hopefully stave off further internal damage.

 

[Km8367]

I understand the inflammation is going to cause the further complications even if asymptomatic. I think I'm mostly freaked out about the side effects of remicade and that it's such a strong medicine.

 

[Clash]

Actually recent studies have shown the risk is higher with the thioprine group, Imuran and 6mp.

I can understand your fear I was the same way, my son went straight to remicade when diagnosed and later added the immunsosuppressant methotrexate. Hard decisions for sure. But to be honest, my fear was much greater when we realized remicade was not enough to quell my son's inflammation. The fear of uncontrolled or under treated crohns out weighed that of remicade.

Maybe you could make a list of your questions and concerns and present them to your GI. If his answers do not allay your fears maybe another med such as methotrexate could be a choice for you.

Hope you find relief and remission soon.

 

[Khaley]

I've been on Imuran since I was diagnosed almost eight years ago and basically thought I was in remission, with an occasional small flare. My symptoms were very mild until this past January when I started having obstructive issues. I had no idea of the damage that was being done by the smoldering inflammation and was floored when my GI doc said I needed surgery. He started me on Remicade in April. I had a small bowel resection six weeks ago and my surgeon said I had no inflammation, which I attribute to the Remicade. I completely understand your fears about the drug. I share them. But at this point I fear the disease more. I am thankful for every infusion and hope it continues to work for me. I wish you the best whatever you decide.

 

[alex_chris]

I agree very much with the posters above.

First, biologic drugs such as remicade can have side effects, but so do immunosuppressives such as azathioprine. Back in the days many years ago when biologic drugs were first introduced, they were only given to severe cases. Today, the decision is quite different. You look at whether a patient is in the high risk group or low risk group and then decide... either for immunosuppressives or for biologics. A diagnosis below the age 30, other complications such as polyps, not being in remission etc. would actually put you into the high risk group by itself (the high risk group doesn't mean you have big problems, it is just a statistical probability categorisation). But you also failed azathioprine, so going for a biologic is actually a no brainer from a medical viewpoint.

As noted above by others, the general opinion these days is that the effects of constant inflammation (even if you are not in a lot of pain or have severe symptoms) are much worse than taking the risks of certain potential side effects of long term maintenance drugs. In particular, the scaring from inflammation can lead to narrowings that may ultimately require surgery. You really do not want that.

Just two mor things, ask your doc about Humira - it is the much more commonly used biologic these days, you can take it at home. Plus, has your doc prescribed corticosteroids to deal with the current inflammation short term?

 

[my little penguin]

The thing is remicade has POSSIBLE side effects. I stress the word possible .
All drugs have possible side effects including Tylenol. These may happen but only in a very small percentage of people . The known effects of under treated inflammation is very real with crohn's. Living without a small intestine is not an option so once you cut the odds of having to cut again are very high.
Remicade has the highest success rate for crohn's .
It works very fast as well (6 weeks).

My child has been on everything (pentasa , 6-mp plus combos , asacol , Mtx , remicade , humira and now humira plus Mtx). He is only 10.
So I get the scary part.
Remicade was the first thing that worked for him and reduced the inflammation .
Humira works but it took close to 5 -6 months to get to the same point he was at with remicade since remicade is weight dependent and they can raise or lower the dose based on your individual response .
Humira comes in one dose only for adults regardless of weight so you can only increase it from every two weeks to every 10 days to every week .
Not a whole lot of wiggle room.
It also burns like crazy .
Don't get me wrong it does work .
Remicade was just easier .

Hope you get the inflammation under control fast .

 

[Desperatemom]

My daughter feared all of the Crohns meds and one day, since she was able to deal with her minor symptoms, decided to stop all meds cold turkey

She sailed pretty well for three years with pain she could tolerate. Didnt even go to GI.

Until last month when a major flare up ended her in the hospital. Doctors told her she was very lucky she had not ended in hospital sooner because she was a mess. She had horrible infection and inflamation.

Its been three weeks of suffering for her and she told me that she will go on Remicade or anything that will make pain go away. She has stopped worrying about the possible side effects.

So inspite of her hidden fears and mine, dont wait until it gets to this point. Talk to your GI and if it would make you feel more at ease, get a second opinion.

 

[syzygy]

KM, I'm in a similar boat. I was diagnosed in 2012 after several years of several partial obstructions that left my primary scratching his head. I've tried some alternate approaches for a while and haven't had an obstruction for 5 months, but a repeat MRI a few weeks ago showed intensified and expanded inflammation from 18 months ago. My GI advocated strongly for starting a biologic with the idea of knocking out that inflammation before strictures develop. I'm taking her advice and starting Remicade next month, which kind of freaks me out. I'm worried about the side effects as well as her warning that a quick reduction in the inflammation can itself result in stricturing. (Damned if you do, damned if you don't.)

There's a lot of anecdotal evidence about that idea that "simmering" inflammation leads to strictures and it sure seems logical, but does anyone know of any empirical studies on it?

 

[DJW]

Hi. I'm not sure you could find any proper research on that. I know it's not a study I would volunteer for.

I want feeling sick at all when I got an obstruction and perforation. During surgery the surgeon discovered the crohns returned.