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

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Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5854
   Posted 11/6/2009 5:47 AM (GMT -7)   
     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.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 11/6/2009 9:22 AM (GMT -7)   
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.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 11/6/2009 10:07 AM (GMT -7)   
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
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/6/2009 4:00 PM (GMT -7)   
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
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 11/6/2009 4:30 PM (GMT -7)   

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!



~sukay~
 Bipolar - 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia

Post Edited (sukay) : 11/6/2009 4:40:39 PM (GMT-7)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5854
   Posted 11/6/2009 6:48 PM (GMT -7)   
      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!!
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


Nellys_Mum
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/7/2009 2:07 AM (GMT -7)   
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 :)

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5854
   Posted 11/7/2009 9:32 AM (GMT -7)   
     Where is askapatient?  Is it a website?
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 11/7/2009 10:12 AM (GMT -7)   
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!
Living with Crohn's Disease since Jan./2000 
I'm a true Crohnie with IBS and Arthrities too. I have Crohn's very mild compared to a lot of Crohn's people.
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Tramadol for the pain
                               Cimzia Injections. Just started on 9/30/2009                      
No Surgeries
 


Nellys_Mum
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/7/2009 11:31 AM (GMT -7)   
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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