Worried about Remicade

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jhicks
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Date Joined May 2009
Total Posts : 177
   Posted 5/14/2009 6:42 AM (GMT -7)   

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Date Joined May 2009
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VIEW IMAGE   Posted Yesterday 9:51 PM (GMT -6)    VIEW IMAGEVIEW IMAGE

I have been on Pentasa for 4 years. I have done incredibly well since I was diagnosed during an emergency appendectomy in apr. '05. I dropped from 2 pills (500 mg) 4x a day to 2x a day while pregnant and nursing a healthy baby girl. about a year ago, I was feeling so well and having so much trouble remembering to take the meds that I dropped to 2 pills once a day on my own. In Feb, I started having mysterious daily swelling in my right ankle that has continued until today. I also have had migratory arthritic knee pains, which I experienced prior to my first flare in 2005. Could not figure out why. I also have had periodic canker sores that never seem to totally go away. This has been happening since Feb., at least. And I'm having right jaw pain, which is a new one and I'm not sure if it's related. Had a colonscopy last week that revealed two areas of inflammation in my colon. I had a small bowel study this morning that showed no inflammation. I just recently started having some stomach issues - which may be more related to the crappy preps I'vehad to take in the last week for colonoscopy and small bowel study. Prior to the small bowel exam, my GI said he wanted to put me on Remicade. THIS SCARES ME TO DEATH. I have two kids - 8 and 2- and am terrified of possibly putting myself at risk of lymphoma down the line. My girlfriend died of lymphoma last Thanksgiving. She was only 44 - it was not related to Remicade. My husband has some minor health issues, but I worry A LOT about putting myself at risk for something that could take me from my kids down the line. I asked the GI if I could up my Pentasa again and he said no. Am awaiting biopsy results of the inflammation to see how we'll proceed. Can any of you speak to remicade and how you've weighed the lymphoma/other risks in your decision to take or not take the treatment?

 

Thanks so much.

Joyce

Dxd Apr. 2005 after emergency appendectomy/bowel resection. Takin pentasa, multi-vitamin, Vit. D, Fish oil, turmeric, the probiotic Align and osteo biflex.


yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 5/14/2009 7:36 AM (GMT -7)   
Joyce, like my doctor explained it to me. Those are rare side effects. I have been on Remicade for over 8 months and it has helped alot. If you read the warning label on Tylenol it will scare you to death yet millions take it everyday with good results. That when I decided to give Remicade a try.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/14/2009 7:51 AM (GMT -7)   
Thanks Tony. That makes sense, of course. I just tend to get the rarest of the rare of everything. Even my Crohn's symptoms aren't necessarily typical - which is a blessing, but a puzzle.

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 5/14/2009 8:04 AM (GMT -7)   

My dad almost died of lymphoma but here I am two years into Remicade with no side effects. I really think most of the side effects are associated risks, meaning the group tested had a slight increase in cancer. You could just as easily associate the risk of people who wear brown shirts on Fridays, etc. What I mean is the risk has not actually been tied to Remicade.

There are side effects that are more common which yur GI wil make you aware of. Most of them are fixed with Benedril.

It took me an entire year to get past the fear of Remicade and to submit to it. Don't waste your life in fear if you can be well!

 

take care!

 


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/14/2009 8:07 AM (GMT -7)   
Thank you!

SherryAnn
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 5/16/2009 8:36 PM (GMT -7)   

To Joyce:  My daugher also has been told by her g.i that she should take Remicade to help heal a fistula and we are so wary of her going on this infusion because of all the terrible things we have heard about it too.  Have you heard about Reishi mushrooms from someone on this site?  I think it sounds very promising.  Also, natural organic oregano oil sounds interesting too.  It's obvious that doctors don't seem to understand Crohn's at all.  I think they're just grasping at straws, attempting to eliminate the symptoms but is Remicade really going to heal the Crohn's?  I also heard about a new probiotic that sounds so promising but it's not even on the market yet.  It's called "faecalibacterium prausnitzii" and supposedly people with Crohn's are missing this bacteria.  I just pray it comes on the market soon.  Good luck with your decision.  I pray you make the right one.  God bless...

SherryAnn


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/17/2009 5:33 PM (GMT -7)   
Thank you SherryAnn. I hope your daughter gets better soon. And that we can all find better alternatives for treatment. God bless you, too.

Joyce

tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 237
   Posted 5/17/2009 9:32 PM (GMT -7)   
I was worried about that as well. However the chances are small and I believe the benefits out weigh the risks. Now days, who truly knows how many products can cause dangerous lymphomas.
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