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MAL76
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/26/2010 10:16 PM (GMT -7)   
I am new here, but ran into this while doing some research on Remicade costs. Crazy! But have to consider as I do not want another operation if I can avoid it.
Many I have spoken to say Remicade is the best thing since sliced bread, but they are older (77+yo) who had severe arthritis, allowed them to not be wheelchair bound. As for Crohn's, I hear it does great for that too, but what a cost!
I was diag. in 1976 (dark ages) with regional enteritis (Crohn's Disease) and have run the mill of drugs and therapies, surgery in 1996 removed 12in. then surgery again in 2006 removed another 12. No colostomy though! Do not want a third if at all possible, I am getting too old for that stuff (although what a diff 10 years makes in surgical procs!)
I have great docs at Mayo and have been in remission (for the most part) since 2006. But worry how long til next surgery or should I spring for the Remicade to avoid. Docs tell me that it would be dual therapy with the 6-MP as that has shown good success.
I have a 6yo son and want to maintain good quality of life for long long time, hoping that is possible.
I have learned to endure a lot and have extremly high tolerence to pain, given that I have perservered with this sucking cronic disease for over 30 years.
My advise to newbies of this affliction...... learn bio-feedback, listen to what your body tells you and seek out excellent doctors, get rid of the ones who are not on the cutting edge or have your best interest at heart, they are out there, just a bit harder to find.
 
Would appreciate feedback on my Remicade contemplation. I do have great insurance but it is the long term I am concerned about.
 
Cheers

50yo Computer Tech w/ Crohn's Diagnosed: August 1976 at 17yo
Whole gammut of meds...Sulfa drugs to start, lots of prednisone for a long time (Osteoporosis), Asacol, Entecort, Flagyl..name a few.
Now 6-MP, multi-vitamins, folic acid, calcium citrate, fish oil, holy basil, good diet & exercise.
2 surgeries, 1996 & 2006, 22 inches removed but luckily no bag.
CD is currently under control. Contemplating remicade. Life is one big medical experiment!


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/27/2010 3:08 AM (GMT -7)   
Hi and Welcome to Healing Well, I was on Remicade for over 5 years it gave me my life
back. I had to switch to Humira because the remicade got to expensive for me.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on and Humira. B-12 injection once a month.
Also diagnosed with Rheumatoid Arthritis.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/27/2010 7:22 AM (GMT -7)   
Many have had great success with Remicade. I feel lucky that after 35 years with this darn disease I am able to be maintained solely on Asacol. Good luck and welcome to Healingwell.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/27/2010 4:57 PM (GMT -7)   
I began Remicade in 2004. It put my intestinal symptoms into remission after the third infusion. I received infusions for 2.5 years when I had to stop as Remicade was no longer controlling my ankylosing spondylitis. I began Imuran at the same time I started Remicade and have remained on it since 2004. I attribute the Remicade to getting my guts into shape and the Imuran for keeping it that way.

Making the decision to start Remicade is really one of those things that has to be weighed in terms of ones own situation in conjunction with his/her doctors. BTW, welcome to Healing Well!
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 

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