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Reactions to Remicade....good and bad stories please

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Crohn's Disease
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Posted 11/6/2009 12:47 PM (GMT 0)
     I have ulcerative proctitis and am contemplating starting Remicade in the near future.  Since Crohn's patients have more experience than people with UC with this drug, I am interested in hearing all your stories.  Don't be afraid to submit your bad reactions.
Posted 11/6/2009 4:22 PM (GMT 0)
I started Remicade 48 hours ago. I am going to start a thread later today with more details, but let me say that today I had the first solid bowel movement in over 4 months! Pain is all but gone and I am back to sleeping through the night again! I'm so happy I could cry. Check for my post later today. The infusion itself went without a hitch.
Posted 11/6/2009 5:07 PM (GMT 0)
Hi, i only managed to get 1/12 doses of remi as i had a reaction halfway through the 2nd  and had to  unfortunatly come off it. i felt the benefits after the first dose though had loads of energy and a small fistula healed up  within a week , i'm not put off to trying remi again in the future if i have go down that route. Wishing you good luck with  it really hope it works for you Bev x  wink
Posted 11/6/2009 11:00 PM (GMT 0)
Husband has been on remicade for 18 months now. It saved him from surgery last year, and has kept him healthy. He has some infusion reaction in that he has joint pain and fever for about 24 hours after the infusion. Recently though, in the past week, he's developed some joint pain and lots of swelling, and he's being investigated for drug induced lupus and various other things. . . though we won't know until next week if remicade is to blame for any of us current woes.

But on the whole, remicade has been a good drug for my husband, it got him out of surgery, and has kept him healthy for 1.5 years. And even if he needs to get off of it now because of bad reactions, I still think it was a good drug, and that it was worth trying.

PV
Posted 11/6/2009 11:30 PM (GMT 0)

Hi Christine,

I have been on Remicade since it first came out in 1999 and just recently had to come off of it.

I was steriod dependent in 1999 and Remicade helped me stay off the steriods and gave me a lot of help. In fact I never had to have a surgery until now. 

The only reason why I had to come off the Remicade was because I have a history of MS in my family and recently developed some neurological problems that prompted me to see a neurologist that ordered some tests for me.

They found lesions on my brain that are very consistent with MS so I had to come off the Remicade immediately.

Since off the Remicade in August I developed 2 bad flare ups and have to have surgery.

Remicade was a wonderful drug for me that also helped my arthritis tremendously.

I wish you the same success!


Posted 11/7/2009 1:48 AM (GMT 0)
      Thank you for your responces.  I am starting to feel more at ease.  I had the PPD test today at my GI's office.  This is my third flare in a year and a half and getting sicker with each one.  I stopped the 6MP today myself.  That is doing absolutely nothing.  Been on it for seven years.  At first it worked somewhat, kept me out of a flare for two years, then one year, then started flaring every year.  Now, it seems I have gotten dependent on prednisone.  I was so bad today the doctor told me to go back on the 30 mgm of prednisone, otherwise, I knew I was hospital bound.

     Keep the responces coming in please!!

Posted 11/7/2009 9:07 AM (GMT 0)
My 13 y/o has had 3 infusions and has stopped bleeding until today actually.. been a month since last infusion. she's still been very ill the entire time so for her i guess it did its job(stopping bleeding/inflammation) .. sorta? but wasnt her miracle cure. half of her hair fell out so far. shes back in hospital as of today and theyre talking surgery :( askapatient is a great place to find peoples experiences with meds.

gl :)
Posted 11/7/2009 4:32 PM (GMT 0)
     Where is askapatient?  Is it a website?
Posted 11/7/2009 5:12 PM (GMT 0)
I did Remicade many years ago probably right after it first came out. I only had 3 infusions and after the 3rd I had a reaction and ended up in the hospital. It did help me though and I felt great on it until that happened. I hope it works for you!
Posted 11/7/2009 6:31 PM (GMT 0)

Christine1946 said...
Where is askapatient? Is it a website?

yes christine it is.. sorry about that. askapatient.com you can enter drug names and get patients experiences
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