Hi Everyone i need your input please help me im new to this

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Regular Member

Date Joined Jul 2008
Total Posts : 36
   Posted 7/26/2008 12:48 PM (GMT -7)   
 HI everyone i am new to this site and i have C.D as well as most of you im an 18F...i should be starting remicade very soon and i want to know everyones opinion on it. I am very nervous to use it because i know there are a lot of side effects particualty lymphoma which i am terrified about...i also have 3 rectal fistulaes right now and they have not closed up yet so thats why my doctor wants me to go on it...i am currently taking 150 MG of 6MP since i have been diagnosed in aug 2007 and it has showed me no relief.....i am very sad all the time because i am still new to having crohns disease and i need some imput and guidance from everyone please help me :) thank you!
   Crohns since aug 2007 6mp-flagyl-levaquin soon to be starting remicade

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 7/26/2008 1:53 PM (GMT -7)   
I just wanted to add a welcome. so sorry you are going through this. you will find lots of young (and not so young) adults willing to give you support and info. yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

Regular Member

Date Joined Jun 2008
Total Posts : 28
   Posted 7/26/2008 1:55 PM (GMT -7)   
hi lala,

i too have trouble with fistulae, and beginning remicade was wonderful for me. it staved off the fistula problems for 4 years until i went off of it in hopes of having a baby. the fistula trouble started back up and now i'm taking humira. i've never taken 6mp, but my personal experience with remicade was very positive.

Do your best, then to hell with it.

Veteran Member

Date Joined May 2007
Total Posts : 589
   Posted 7/26/2008 5:11 PM (GMT -7)   
I was on remicade and 6MP for quite some time. It helped for a good two years. Yes, it does increase your chances of getting lymphoma, however the chances of getting it are still very low. 10 times a low fraction is still a low fraction. Personally, the way I thought of it was that if I got lymphoma, I got it for a purpose, just like Crohns has its purpose. Whether or not to take Remicade is ultimately your choice, and if you fear the chances of lymphoma are too great, then you should ask your doctor what else he'd suggest. Probably Humira, which I have also used. It helped, but not as well as Remicade, and not enough to get me back up to normal.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 7/26/2008 5:28 PM (GMT -7)   
6mp has been the only thing that really helped me and put me in remission for 7 years. However, I got real bad joint stiffness/pain while on it so my doctor doesn't want to put me back on it.
I also did Remicade but only had 3 infussions. I had a bad reaction on the 3rd one so I couldn't take it again. I have never tried Humira and really trying to save that as long as possible.
Right now I'm giving Methotrexate a try while trying to get off prednisone and so far so good. You will learn here that everyone is different with this disease and what works for someone
may not work for someone else. You just sorta have to give something a try and see if you can tolerate it and do well on it. I have tried many of the drugs and most of them I don't
do well on. Hang in there and try not to worry so much. I look at it this way, I need these drugs to help me feel better and whatever problems they may cause, I will deal with it when
and if that time comes.
Good luck and Welcome to HW!!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
No Surgeries

Regular Member

Date Joined Jul 2008
Total Posts : 36
   Posted 7/26/2008 5:53 PM (GMT -7)   
wow thank you everybody sooo much!!! i appreciate your advise!!! has anyone ever heard of anybody getting lymphoma while being on the remicade tho? or any real bad serious problems???
                     Diagnosed Aug 2007 of crohns disease
                     Currently Taking 6mp (soon remicade)
                        Fistulaes make me mad!! lol

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 7/26/2008 6:01 PM (GMT -7)   
Kasper, being on immunosuppressants can also reduce your chance of building antibodies to the Rem and then reacting to it. The 6MP may well be a good idea.

Lalala, welcome to HW. You might like to know that you can find information on Rem in the new meds thread, here.

Co-Moderator Crohn's Forum.

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 7/26/2008 6:07 PM (GMT -7)   
Hi lala! Sorry to hear your having to join us here. I have the same fears of Remicade, especially because Lymphoma is already in my family. My Mom has it. So for me I feel it is even more risky. But I have seen from others on here that it was a God send for them. Sometimes we have to weigh the risk and benefits, really talk it over with our doctors, and decide. Side effects are scary, but so is untreated Crohn's! Kind of a catch 22 for us. Best of luck to you!
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down from 10 mg again, Asacol, Questran, Toprol XL (for high blood pressure).

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 7/26/2008 7:07 PM (GMT -7)   
Hi Welcome to Healing Well I have found much comfort in being able to get and give help here. I was on Rem. because I had 2 fistula's .The Rem. healed one . Mine was large to small and one that came to the surface of my belly after abcess surgery. I was also on B-12 at the time . I was on Rem. for 6 months. Eventually I had resection and doing good at this time. I follow a low residue diet. We all have felt sad because of being diagnosed with crohn's but it is much more livable when you have the great people here to share things with and who are going threw the same things. I learned alot the first year by reading people's post here. Hang in there things will get better. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

New Member

Date Joined Jul 2008
Total Posts : 3
   Posted 7/26/2008 7:45 PM (GMT -7)   
everyone made me feel soo much better thank you again!!  in your opinion though do you think it is not a good idea to be taking remicade and 6mp together? im getting yesses and no's from all different doctors how do you all feel about it??

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 7/26/2008 8:07 PM (GMT -7)   
Kasper, that is simply not true as far as I know, please post a link to a peer reviewed study if you have one. In addition, there have been no published studies on people using Remicade and LDN at the same time so I don't feel you should be recommending this.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 10mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).

Post Edited (Rider Fan) : 7/26/2008 9:12:56 PM (GMT-6)

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 7/26/2008 8:58 PM (GMT -7)   
And they all had eaten ice cream in their childhood, it doesn't mean ice cream causes lymphoma, now does it? :)
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 10mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).

Julia Hill
Veteran Member

Date Joined Mar 2008
Total Posts : 560
   Posted 7/27/2008 2:59 PM (GMT -7)   
Hi lalala,

Welcome! I'm sorry to hear you are so sick and at such a young age. I think the remicade is a good solution for you to hopefully close those fistula's. As I'm sure you have read it has helped many people do that very thing and I'm one of them. Yes it has its scary side effects, but most of our meds do. I really don't think your GI would have recommended it if he thought you had an easier option. Good Luck, and I wish you all the best!


Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 7/27/2008 6:02 PM (GMT -7)   
It's important to recognize the difference between a side-effect and an adverse event. Moon face, increased appetite and mood swings are a side effect of steroids. Lymphoma is not a side effect of remicade or any of the immuno-suppressants. The use of these drugs will statistically increase your risk of developing lymphoma, but as has been pointed out, the risk in the general population is very low to start with. What about the increased risk of bowel cancer from not getting the inflammation and repeated ulcerations under control? What about the increased risk of perforation of the bowel, what about the increased risk of septicemia, what about the increased risk of obstruction? What about the increased risk from exposure to the radiation needed to repeatedly x-ray patients whose disease is not controlled.Etc. What about the increased risks of malnutrition from not being able to eat a healthy diet?

We are already at increased risk of the normal population for many adverse events because we have a chronic inflammatory illness. It is important to keep it in perspective when making these decisions. Don't get me wrong, I absolutely understand your concern. I have had them myself and I realize that statistics don't mean anything if you happen to be the one who gets lymphoma. It's just that you have to measure it against your life situation. I used to think I could just tough it out, rather than advance to the next tier of drugs. That was 30 years ago. Now, after three major surgeries I am unable to work because of the cumulative damage that has been done from years of being under-medicated -- and I am currently on immuno-suppressents and still struggling to stay away from the next step -- the biologics. I'm not sure I made the right decisions for myself when I refused to take 6-MP when I was 25 years old. Now, I'm not sure I'm making the right decision to opt not to take Remicade.

I just hope that you don't sell yourself short on your today out of fear for your tomorrows.

30+ years living with Crohn's.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 7/27/2008 9:08 PM (GMT -7)   
Hi and welcome. I've been on Remicade for 3 years. Now I can walk and ride my Harley. No side effects that I have noticed unless you call feeling better a side effect. Hope it helps you too.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

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