Starting Remicade this week. Have questions....

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redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 4/26/2008 8:31 AM (GMT -7)   
Well I did my initial TB testing last week so I can have clearence for Remicade infusions. I dont have TB! Wonderful...
 
Anyways, Im scared as hell to begin this drug. Are the side effects as serious as Im reading?
 
Also can my body become immune to Remicade, how long does it take and whats the next step?
 
Has anyone ever stopped Remicade after gaining remission and then restarted whit flares? Does this effect the drug?
 
Thanks

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 4/26/2008 1:39 PM (GMT -7)   
I was so anxious to start it, too, but it was a piece of cake. Really.

The only side effect I had was some hair loss that wasn't noticeable to anybody but me. I did not take premeds, my GI at the time felt like overmedication was a problem and only those that showed a need for premeds got them. I never did need them and am thankful for that - it allowed me to work during the infusion, drive myself home, or return to class or work afterwards. The Benadryl knocks me out.

IMO, there are serious side effects to every drug. They are rare with Remicade but you are given the med while near a doctor just in case and heavily monitored. They will do regular labwork, too, to keep an eye on things.

After 2.5 years on it, I did build antibodies to it. It just stopped working and I started to flare up. Then I reacted at one of my infusions. 2 Benadryl, stopping the med, and taking a break stopped it. We were able to complete it just slower than usual.

I ended up admitted by my PCP thanks to a huge flare and was assigned a GI in the hospital. He gave a treatment, I reacted again. He decided that I probably had grown antibodies to the drug, which was making it not help anymore and causing the reactions.

So I moved to Humira, which has been great as well.

I loved Remicade. It gave me my life back for 2.5 years. I saw results within 2 infusions and was living symptom free a month after starting it.

Obviously for me, I flared when off it so who knows if I was ever truly in remission. At the time my GI warned against restarting but others have been able to restart and the studies are always changing.

Good luck!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/26/2008 3:13 PM (GMT -7)   
Hi I was on Rem. for 6 months and got a very bad cold then after that I got the antibotics put to me during this time I flared and was taken off the Rem in Sept.By Jan. I was in for a resection. I never built up any problems to the Rem. I had no problems taking it. I wish you lots of good health and let us know how it goes. lol gail

styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 4/26/2008 4:32 PM (GMT -7)   

I have had 3 treatments so far, I was scared at first. It was fine, I was alittle sleepy after but that was about it. I haven't noticed a change yet cause I am still tapering off the pred. As for the hair loss I started taking extra folic acid and b 12.....haven't had any hair loss. Drink lots of water a few days before and after, it helps your veins pop up better. I will be thinking of you, let us know how you make out.

 Sherrib64@comcast.net


 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 4/27/2008 4:30 AM (GMT -7)   
Hi, Well I have been on Remicade for almost 5 years and I have no-side effects from the drug. I think its a wonderful drug its kept me from having a second surgery.
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 Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


JenLS
Regular Member


Date Joined Apr 2008
Total Posts : 60
   Posted 4/27/2008 1:51 PM (GMT -7)   

I just had my 2nd infusion and am feeling great! Yeah!!  I was scared a first too, there are some pretty scary possible side effects.  I haven't had any.  It's a simple process.  A good time to read and relax as your are infulsed! 

Good luck! 

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