20 Years of Crohn's

[Lovelynerdgirl]

Hello,
I was first diagnosed with Crohn's disease almost 20 years ago in 1992...I managed my Crohn's for the first 16 years with Pentasa. I had one major flare in 2000 when I had to go on Prednesone (Since then I REFUSE to go back on it as it affects my mental health). In 2008 I was put on Entocourt for the first time. When that didn't work they added Methotrexate injections. While on these to medications I was lucky enough to contract E Coli. Things have been terrible since. I ended up having a bowel resection in 2009 followed by two hernia surgeries in 2010 and 2011. I am currently waiting to have scopes to diagnose a flare. My GI is strongly suggesting that I go on Biologics as a long term solution to control my Crohn's.
I have done some reading on both Humeria and Remicade and am very torn...I desperately need some relief from my symptoms but am terrified of side effects (mainly the increased chane of developing cancer as I have two children).
Any feedback on both of these drugs would be extreemly appreciated.
Thanks
Sarah

 

[luvincookie2001]

I have used both with great results. I used Remicade for 2 yrs and it worked great but the infusions and sitting in a hospital bed for hours was kind of inconvenient. I also had to travel since my town did not have a clinic that did the infusions. Only reason I stopped remicade was because of getting pregnant and it was still so new I didnt want to risk anything.
Ive been on Humira for just over a yr now and it is much more convenient. I use the auto-injection pen so I can do it at home on my own no problem. It seems to be working just as well. Only problem Ive had is as a side effect aparently I have now developed psoriasis from Humira. It is rare but it can happen. I have no history or family history with it either and its even more weird since humira is also used to treat psoriasis.
Almost every drug these days has a an increased chance of cancer but I have found both of these drugs great in their own way putting me into a clear remission both times.

 

[toml99]

I think you have to keep the cancer issue in perspective. I'm on Imuran, which is shutting down part of my immune system and therefore increases my risk of cancer. I go from 1/10,000 (the normal population) to 4/10,000. That's technically a fourfold increase. Now, if I contract cancer it's still a catastrophe to me, but the odds look pretty good and I'm willing to accept the risk. The alternative is to continue to live with CD, which is not acceptable to me.

I don't know how the odds are with Remicade and Humira, but you might want to find out, as it might make you more comfortable. Or not. But at least you'll have the data.

 

[Miss Underestimated]

The risk with Humira is similar. Also, we have to weigh the risk of cancer due to the CD.

Then compare it with the other every day risks we take without batting an eyelash.

I agree - take that one thing, and think about it nonstop, and the fear grows and grows. Put it into perspective, and it is no longer so frightening.

I don't want to be the 4 in 10,000 but I am willing to take that risk because the risk of horrible symptoms and no decent lifestyle due to Crohns is 100%.

I pray they figure out this cancer part of it, since the biologics really have brought hope of a better life to Crohns sufferers.

 

[Cupcake]

My story is very much like yours. I waited as long as I could to avoid going on biological therapy. I was first offered Remicade when I was still a teen ager, and my parents immediate reaction was "NO!" as it was initially explained to them as a form of chemo.

The truth is, with any medication and the risk you have to make, it's a hard process to go through, and it really can take a toll on your anxiety which seems to make every other crohn's issue worse. I finally knew I had to go for biologics when I was developing abscesses in fistulas I had, which had no sign of healing on their own. It was the most pain I had ever been in, and a very embarrassing, humiliating condition to try and explain with coworkers and peers.

It has been brought to my attention that the thought process on using the biologics earlier on now, are thought that they will prevent the body from doing any more damage to itself. I often wonder what state my disease would be in if I had been taking these medication since being a teenager. One can only guess.

Best of wishes to you in doing your research, consulting supportive parties in the medical community, and making the best informed decision that you can!