I want to discontinue remicade but I'm scared...

[Harper]

Hi everyone- I have had mild-moderate crohns disease for 6 years now. I initially was on entocourt, then pentasa, 6MP, and now I am on remicade and have been for 2 years. I initially LOVED remicade- no pills and I felt normal.

But now am I seriously concerned about the side effects. Since starting remicade I have had 12 cavities (no cavities previously- healthy teeth) and 1 root canal. I am also concerned about when I would like to have children in the future ( within the next 4 years). I have gone gluten free and mostly dairy free and feel that I am well controlled. I occasionally get nauseated but rarely have diarrhea. Cramps are my most common symptoms and are usually due to my functional bowel disease (I have very loopy bowels according to my GI).

I would like to go off of Remicade because of my side effects and scary ingredients. I know that once you are off the medication it is difficult or impossible to restart it.

Has anyone done this? Do you have to go off cold turkey? Experienced tooth problems like mine? Do you have any weird side effects when you go off remicade? Any advice? I just want to be medication free. :sign0085:

 

[Justanothercp]

I've been on Remicade for about 8 years. I've thought about trying to stop or switch to Humira, but I keep thinking "if it ain't broke don't fix it". Meaning it is working for me, so I'm going to stick with it. My GI points out staying on it is better than ending up with another bowel resection sooner rather than later.
So far, I've had not ill side effects, no issues with teeth.

 

[Lady Organic]

Hi Harper,

you failed pentasa and 6-mp? is that why you escalated to remicade?

you understand options are running low at the step you are in, in terms of drug treatments. if you flare, it could get complicated, maybe more complicated than cavities...so keep that in mine before making a decision. when we are healthy, we often come to think we dont need our medication anymore. I have been there. for some people, it works, and they can be drug free, but for others, tragedy can happen, that was my case. I flared after stopping 6-mp and ended up with arthritis as extra-intestinal manifestation. what a pleasant gift from Crohn's.

 

[kiny]

I have gone gluten free and mostly dairy free and feel that I am well controlled.
I just want to be medication free. :sign0085:

I've been on the forum a while now, and have seen posts like yours before. A few months later those people usually make a post about having had surgery.

Medication helps prevent unneeded surgeries and helps control the damage the disease does to your intestines.

I've never read any convincing studies that diet can control this disease, even the studies suggesting EN can control the disease, I find questionable. (doesn't mean that you can't add a diet to your medication however)

Regarding your teeth, tell your GI you're worried about that issue. But I don't think it is related to your remicade, but it doesn't hurt to task.

 

[wondering]

I would talk about your concerns with your doctor and for some people it's not impossible to stop Remicade (although may have to use something like Humira if you flare).

I was on Remicade for about 2 years and stopped it. I had been started in the setting of having a severe flare soon after diagnosis that didn't respond to steroids. Remicade worked great but I didn't feel like I had failed Imuran. And, like yourself, I was worried about the risks with Remicade. The risks are absolutely worth it if it keeps you healthy but I wanted to see if I could stay healthy without it. I had several discussions with my doctor about stepping down my therapy and had an MRE and scope to confirm my disease was well controlled. I've now been off Remicade for ~5 years and done very well.

Basically, for select people, it may be possible to come off but you need a serious discussion with your doctor about the risks and plan for how to monitor for disease recurrence before you get to the point of needing surgery.

 

[wild_one353]

when you dropped dairy products did you make sure you got enough calcium from good supplements and vitamin d? that can influence your dental health, be careful not to falsley accuse the drug for your dental symptoms, other factors may be the culprit.

 

[shamrock15]

I too would caution against discontinuing remicade based on my experience. i have lived with crohn's for just about 30 years now, and remicade is the ONLY thing that has ever let me lead close to a normal life. It will have to demonstrably stop working for me to discontinue. I have absolutely no doubt that stopping it otherwise would rapidly result in yet another surgery for me, and as I have had 6 so far, the next one would likely seriously alter my lifestyle.

BUT - you have to do what is best for you. Not everyone is in the same boat as many of us crohnies.

 

[shamrock15]

@Wildbill - I can believe the dental issues. I have had gum infections fairly regularly with remicade and have lost gum tissue. This has come at a time when I have had scans show an increase in calcium in my bones. Some of us are just gifted with dental issues from our crohn's.

 

[lgpcarter]

I would like to add my voice to those cautioning you not to be hasty in dropping the Remicade. I stopped it in 2009 to get pregnant, even though my GI, whom I trust, advised that it was safe. This was 6 years ago, so many more successful pregnancies and healthy babies since then.

Fast forward a few years and I flared about 1 year after delivery (2012) and I am still trying to get that one under control. Tried to go on Remicade, had a reaction. Humira and Simponi also a fail. Stelara not quite doing the job as I am currently in the hospital for a blockage due to inflammation. Entyvio is my only untried drug left. Cimzia not available in Canada.

If I had to go back, I would stay on Remicade. I also suffer from fistulas and Remicade kept them healed. They are a major nuisance to me now and I suspect will eventually end up with an ostomy because of them.

This is all my experience, but something to consider.

I do have a lot of cavities. Some predate Crohn's and many are after. Nutritional deficiencies, prednisone are factors for sure. For me, I don't think Remicade was a factor.

 

[2thFairy]

I also recommend that you stay on Remicade rather than just quit using it. I was on the high dose of Remicade every 4 weeks when it was deemed necessary to remove my colon. I was diagnosed with UC, so removal of the colon is considered a cure, and therefore I now require no more meds. I had absolutely no issues coming off Remicade "cold turkey" (as you say), but I would recommend staying on Remicade unless you are currently having bad side effects from it.

 

[SCCrohnie]

I quit Remicade in 2011 and I regret it. Cimzia works decently but nothing like Remicade did.

 

[Lady Organic]

sorry to read that. did you try remicade for a second time without luck, or you went straight to Cimza?

 

[Alfonso323]

Had another Entivyo infusion yesterday...did nothing Since February this med has had no positive affect. All I can feel is constant lower back pain and abdominal discomfort, pain, nausea and vomiting. Spoke to my nurse about my issues and I'm thinking about going back to Remicade.

 

[duh panda]

Stumbled across this thread and I've just started Remicade loading doses for the third time. First was last Monday and minimal side effects. A day or so of exhaustion, mild joint pain. It is very high risk to go back to even if there's no sign of antibody response.

First set of loading doses were in 2006 in hospital after nothing was managing inflammation. Felt improved but discontinued as one the crohns got a good kick in the pants the prednisone became more effective and I wanted to try less aggressive treatments first after feeling terrified about risking the side effects. Never felt great, but was functioning well enough to graduate h.s. and attend college. Spring semester (2010) as a sophomore was admitted again, diagnosis officially crohns, started Remicade with humira as back up. Closest infusion center was a 3 hour drive one way and inconvenient when I returned in the fall. Discontinued spring 2011 for humira. Best anything was ever managed till becoming ineffective after a year and a half. Pushed doses and limped for another 1.5 yrs until cimzia. No response good or bad. Started entyvio Sept 2014. Dropped after 8 months. Due to no improvements until starting mtx. Around thanksgiving.

Going back to Remicade was only option since technically I never failed, but if I had realized the risk I'd be facing now I would have let it run its course in college.

 

[4peace]

I 100% understand your concerns. I've been on Cimzia and Imuran and I feel like the combo of those lowered my immune system too much. Did they helps my Crohns? Absolutely! But I also feel that they have DESTROYED my teeth and gums- just had yet another root canal last week and am seeing a specialist 4 hours away for my gums because despite having surgery on them they are WORSE than ever and I have great dental hygiene but I am told I will start loosing teeth within the year. I am 35 years old! I also just had a minor surgery to cut out pre-cancerous cells for a cancer that typically takes a long time to develop- well, these cells developed in 1 year. I believe this is all due to a lowered immune response. I recently took myself off of the meds and boy is my GI unhappy with me! I am NOT suggesting you do this, I am merely sharing my story. For me, the pre cancer cells and MAJOR mouth issues are enough to decide that I'd rather deal with Crohns symptoms (I did not have insurance or medication or health care for the first 15 years of Crohns so I know what that means). This choice needs to be very carefully considered and discussed with your doctors. My GI has put me back on Entocort and Pentasa even though we both know those aren't enough. Maybe though this time they will. I wish you the best and please take a long time to carefully consider your options. Don't do anything without discussing all options with your Drs ( I suggest both your primary dr and gi as sometimes specialists ONLY focus on their "department" and not on you as a whole).

 

[SCCrohnie]

sorry to read that. did you try remicade for a second time without luck, or you went straight to Cimza?

Went to Cimzia after a three-year hiatus on no medication.

 

[Lady Organic]

SCCrohnie : thx, why didnt you return to Remicade if you mention regretting quitting it?