Crohns and Colitis Exchange

My story is not the normal one, so please don't feel threatened or discouraged by it. I've used all biologics that I'm aware of. I was on Remicade for three and a half years with no real results. I was then switched to Cimzia for about a year, again, no results. I had a total colectomy with a temporary ostomy and then an ostomy reversal and I'm now on Humira and methotrexate. I'm not sure if the results I was experiencing are from the surgery or the medication. I had Crohn's Colitis, so the Remicade or Cimzia may have worked for my Crohn's and just not the Colitis, or the other way around.

Either way, I'm back to having some pretty severe symptoms from time to time. I do think that so far, I prefer the Humira and methotrexate combination, but if you're planning to have children any time soon, I recommend that you stay away from it. I was informed when I first started it that if I became pregnant, I would have to abort the baby because of the horrible defects methotrexate can cause. I'm hoping that when I'm ready financially to have children, I'll be able to get my symptoms under control enough to go off of the medication for about six months before trying to become pregnant, and then start again if necessary after I've finished breast feeding. But we'll see how that goes.

If you want more information from me about any of the biologics, feel free to ask, but as I said, my case is far from the norm.

Yes, Remicade and it helped a little, but I'm not sure if the benefits out weight the side-effects/long-term effects of these medications. I've done a lot of research on these and have lots of articles and good reading material to help you make an educated decision.


http://ahhhhhihavecrohnsdisease.blogspot.com/ is my blog and look on the right side and you'll see the Blog Archive. For each month, click on the arrow and a list of each blog entry will show. Just click on the one that is relevant to Biologic drugs, such as Humira, Remicade.

I just really urge you to research Biologic Drugs and what the possible dangers/side-effects/long-term efffcts could be. So many people don't even know much about these drugs and most likely their doctor didn't educate them. It's your health and your responsibility to get the info you need to make the best decision for your overall health. Let me know if you want to know anything specific. I can try to help you. Take care and Feel well.
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HannahLeigh,
I remember reading your posts months ago. You just had surgery. You deserve to feel good... I bet you might have forgotten what "good" feels like because trust me, I've been there and still struggle at times.
Please read about LDN or low dose naltrexone. It's safe, effective, not costly....... BUT difficult to find a dr. that will prescribe it becuase a lot of docs don't even know about it. It's sad. If you're determined like me, you'll find a dr. I finally found one and she's great.
I just think you have been through a lot with your health and need some relief and freedom from the symptoms you experience and the harsh meds you take, that could possibly harm you. If you want more details, let me know. I have tons of links on my blog too if interested http://ahhhhhihavecrohnsdisease.blogspot.com/

I hope you feel better Hannah.

I've been on Remicade for 3 years now. I feel that it helps a lot, but I do have a lot of problems from it. It's better than the Crohns for me though. The only complaint I have is that I'm too far away from my doctor to be able to ask many questions. Like how I tend to have flare ups still- just not bad ones, or if we should shorten the time in between doses so that it doesn't happen. Stuff like that.

I keep reading about cancer as a "side effect" and being that I'm allergic to sulfa drugs and mesalamine, I have no drug options left other than Biologics....I'm doing my research, but the more I learn, the more I don't know what to do. With any IBD drug, I seem to be part of the 1% that gets a serious adverse reaction...with that being said, I'm worried that if I try Biologics, I will get cancer.

I took remicade for about over a year time. It worked so well and I healed so fast that I devoloped scaring and had to have surgery. This doesn't mean it will happened to you. I didnt experience any side effects while I was on it. I did feel like i had a health boost and felt great for the next few days after I had the infusions. I hope you find One that works well.

I took Remicade for over a year and it was wonderful. I spoke with someone else who has been taking it for over 5 years and it has worked great for them too. It's scary to see TB and Cancer as side effects, but the cancer was very rare and mainly seen in teenage boys (from what I read). But, the person I spoke with started the meds when he was in his early teens and he has done great. I tried all other meds and Biologics are the only thing that works for me. As for the cancer scare, I based my decision on the assumption that the risk of untreated Crohn's had a higher risk of developing into cancer than the biologics. But that was just a decision I made for myself and everyone has different opinions. I do suggest you do lots of research before just to familiarize yourself with the drug. Good luck and best wishes.

I'm allergic to Sulfa meds and drugs like 6-MP & Imuran. I am very sensitive to meds. I can't just take any drug without feeling some side-effect or having a reaction. That's why I did the research to find something that's safe AND effective. I finally was able to get a script for the Low Dose Naltrexone and have been on it for about 4-5 days now. I will document how I feel while I'm on this medication.
About the cancer side-effect, I have to take this one seriously since my mom died from Melanoma. My grandmother also died of cancer of the liver or colon. Not sure what one... I was very young. In an article I read, for the people treated with Remicade, the people most likely to get cancer as a side effect were people with Crohn's Disease. In otherwords, the highest % of people that actually ended up getting cancer from Remicade, were Crohn's Disease patients. Compared to the other diseases that Remicade treats.
I am also at a higher risk for colon cancer due to the fact that i've had an IBD for over 10 years now.
When I weigh these factors, I do not think a biologic treatment is a good option for me. It's just too risky and not the safest option for me.
LunaNatasha I just encourage you to know the facts and weigh the positives and negatives. For some people, biologics work and people find them effective. Go with your intuition...

The scar tissue that developed isn't from the time it took to heal, it's usually due to the severity of the disease and the way your body heals. I have similar issues with scar tissue and it's because of the length of time I have had inflammation. What kind of surgery did you have and are you feeling better?
Man you are lucky you didn't feel any side effects while on remicde. My freaking hair fell out and the day of and maybe 2-3 days after the infusion, I was on my butt.. sooooo tired and drained. Everyone's different.

Thanks for your input....it's good to hear a perspective of someone who has been so allergic to many drugs like me. I've been doing my research, and it doesn't make the decision any easier. Having HPV and IBD, I'm afraid that if I take Biologics, it will allow my HPV to turn into cervical cancer. At the same time, I am out of other options, and don't want colon cancer either. Since you mentioned it, I am researching the Low Dose Naltrexone that you mentioned...thank you so much for sharing!