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tamsprote96
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 11/2/2009 6:53 AM (GMT -7)   
Hi all, I was hoping to get some input from my cronnie friends about Remicade.  I have been on Humira since May and haven't seen a lot of improvement.  I was thinking about switching to Remicade.  Have any of you been on this and have you seen results?  If so, how long did it take to show improvement?
 
Thanks!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/2/2009 12:12 PM (GMT -7)   
I bumped up Ivy6's medication thread, you might want to look in there for info about Remicade.

Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 11/2/2009 12:15 PM (GMT -7)   
I started on Remicade in late May and saw almost immediate improvement. I still have occasinal diarrhea, but not daily and not enough to interrupt life. My appetite has returned and I have gained about 20 lbs back of the 45 that I lost last year. I rarely have any nausea any more and am much more energetic. I feel like a million bucks compared to how I felt 6 months ago.
 
I tolerate the infusions well, though the benadryl makes me sleepy. I generally plan to rest and nap all day on infusion day.

tamsprote96
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 11/2/2009 12:28 PM (GMT -7)   
That sounds great! I still have to get up in the night a couple of times cuz of the D so occasional would be a blessing!

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 11/2/2009 12:37 PM (GMT -7)   
Hi i only managed to get 1 1/2 infusions due to a reaction but after the first infusion i felt the benefits i had so much energy i would definately try it again  if and when the time comes good luck! Bev x
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.)


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/2/2009 1:35 PM (GMT -7)   
I've had 3 treaments of Remicade,

The first one was on August 19th, after being brought to the ER by ambulance, because the pain that I was having was more intence then something I ever had before. Even with 20 surgeries on ,my knees, arms, shoulders, ankles, 3 natural births etc. and told thart I now have Crohns.

They tried steroids for my first 10 days of being in the hospital, along with a BUTT load of antibiotics, IV fluid etc.

On August 10 is when they gave me my first Remicade treatment. Everything was fine and dandy, and I went home from the hospital on August 26th.

My 2nd treatment of Remicade was on Sept 1st, then things started happening to my whole body, blurry up close vision that was great before the treatments. Extremely faitgued, my muscles started getting weak, nerves were on fire etc.

After the 3rd treatment Sept 30th, I woke up at 9 PM that night with my whole body feeling like I had been run over by 50 millons HUGE bull dosers. Ambulance ride again to the ER, as I couldn't even stand, never mind walking. They gave me mophine every 3 hours, to help with the pain. Then went home at 4 in the next morning. Then I made an appointment for that day to see my Gastro Dr.He then put me on 30 mg's of Oxycodone ever 4 hours along with Vicodine 15-20 mg's at bedtime. to help with the pain. As the oxycodone makes me energized so I can't sleep at night.

We're hoping that this problem with my nerves hurting so bad every where and my muscles that have basically just shrunk and getting weaker every day. Is just from the 2nd and 3rd Remicade Treatment.

I've been to the Ortho Dr, because it made my new knee replacement( March 09) getting destroyed, my rotator cuff surgery(June 09) destroyed . But there is nothing he can do. I've been to A RA Dr, and there is nothing she can do. Even went to a Spine and Neck Dr, hoping that the numbness and tingling is coming from pinches nerves in my neck and back. But NOPE it is that that at all. All these appts have been in the last week. Trying to get an appointment ASAP to see a Nuerologist Dr.

Getting woried that it is not from the *RARE* side effects, because none of the Gastro Drs have ever had anyone with these side effects that have taken Remicade. I can't find anyone on here that had these side effects. Nor can I find anything on line about it. But these *Rare * side effects are listed in a Brochure that I found at the RA Dr. Saying it attacks your nervous system.


Now I will be treated with Humira first, then if that dosen't work then it will be Cimzia, and hopefully one of these works.
Sally from Milton NH.   
Prevcid  DR   (1)  30mg   every morning 
Oxycodone  (1) 30mg every 4-6 hrs  Dicyclomine (2) 20 mg 4X's a day  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Potassium CL ER  (2) 20mg 3 times a day 
Ascecol EC  (4) 40mg 3 X a day,  Dicyclomine (2) 20mg 4X's a day
Pomrthazine  (1) 12.5 mg 2-3 X's a day
Remicade doesn't  like me anymore. Onto Humira
RICE chex's and I have become really really good friends!!!!!!
 
 
 
 
 


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 11/2/2009 4:00 PM (GMT -7)   

I’ve had two remicade infusions so far and I am feeling the best I have since being diagnosed (4 years ago). I felt the benefits the very next day after my 1st infusion. No more D, no more getting up 5 times a night to go to the bathroom. I am still being careful of what I eat though, I don’t want to go wild now that I am feeling better.

 

I know the body builds antibodies sooner or later but I am enjoying this while it lasts. I have had abscesses and fistula and they are healing nicely and quickly, on these meds. Most people respond well, but some will have negative side-effects. I have had some side-effects which have baffled my drs and they are currently testing to see what is up (if anything).

 

My advice would be give it a go but don’t get your hopes up, just see how it works for you, and good luck! :-)


redone
New Member


Date Joined Nov 2009
Total Posts : 19
   Posted 11/9/2009 8:55 AM (GMT -7)   
I am slated to start Remicade in 2 weeks, but I really don't want to :P Over the last 11 yrs there have been times I have been super sick with this disease, but now is not one of those times. I can live with diarrhea, I'm used to it! I have almost no pain right now and my BM's are pretty much "normal" once a day solid...I don't think I need to take this, but my Dr. is insisting that I don't know what it feels like to feel good because it's been so long, and that if I start on it now, it will help prevent the next flareup from being so bad, and possibly avoiding any future surgeries.

I don't know what to do, but I have managed with this disease for a long time without even taking meds. I only started taking Entocort 2 months ago, and I don't see a difference from before I started taking them. *sigh*

Suggestions?
37 y/o female.
Diagnosed in 2001
Current meds: Entocort, Vitamin D & Calcium
Starting Remicade on November 23, 2009

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