Remicade infusions....what to expect??????

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pain-in-the-butt
Regular Member


Date Joined Apr 2011
Total Posts : 52
   Posted 4/15/2011 10:47 AM (GMT -6)   
hey everybody im new to the forum...i was diagnosed a year and a half ago with ulcertive proctitis through a colonoscopy....this last thursday i went in for another colonoscopy with my new GI and was diagnosed with pancolitis and possibly crohns...i am goin to in for remicade infusions soon and am curios as to what to expect....has anybody got any information or experiences to lend me so i know what to expect....thanks
 

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/15/2011 11:36 AM (GMT -6)   
They typically give you a tylenol and a benadryl before you start your infusion. They give Remicade through an IV. My first infusion took 3.5 hours. I never had any bad side effects from it, it just stopped working for me after the 2nd infusion.
My infusion center has tvs and snacks and magazines. I also brought my husband with to kill the time.
Do you have any specific questions?
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, codeine, Xanax, Imodium. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine, Vicodin, tramadol, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2142
   Posted 4/15/2011 12:45 PM (GMT -6)   
Good luck PIB! when are you going for your infusion? I am going on 4/26, can't wait!!!

I was told to expect the above and that I might be tired after my first infusion so to just take the day off
Ulcerative Colitis (Pancolitis): dx'd 2000; Imuran 200mg a day. Pred taper 40mg over the next 6 weeks from March 7.
Kidney Disease (Minimal Change Disease): dx'd 2007 but believe I had it since 2000 from the sulfasalzine I was on (cannot take any 5ASA's). 20mg Lisinopril 1xday, Diovan 160mg 2xday, Lipitor 40mg 1xday, Calcium 1200mg 1xday, Vit D 400mg 1xday, Calcitriol .025mcg 1xday + vitamin

pain-in-the-butt
Regular Member


Date Joined Apr 2011
Total Posts : 52
   Posted 4/15/2011 2:55 PM (GMT -6)   
@ ttkmhu....i was just curious to see how well or not the drugs worked....if there were any side effects and how fast they went to work ie..feeling better...


@ beth75.....thanks, i have to get a hep b vaccine next week and then asap i hope...my new doc is very proactive.. im gonna take the next few weeks off and hopefullly get things under control b 4 i go back to work. Good luck on the 26th....ill be looking for your post for an update.....haha

nettiemoore
Regular Member


Date Joined May 2010
Total Posts : 88
   Posted 4/15/2011 3:08 PM (GMT -6)   
My first two infusions nothing happened at all. I wasn't even pre-medicated for my first one. Then again, I also didn't get any better. I just recently had my third infusion and I had a tiny allergic reaction. My chest felt tight and I had a little trouble breathing. They made me take a 15 minute break from the remicade, then they put me back on a slower drip. I actually felt better for a couple of days after my 3rd infusion, but I think it has already stopped working and I'm going downhill again.

bostwis1
Regular Member


Date Joined Jun 2010
Total Posts : 268
   Posted 4/15/2011 4:20 PM (GMT -6)   
I only had three infusions then it stopped working, but it has put others into remission for years. I had no side effects. I actually enjoyed going, because I got to sit in a comfy chair and they fed me snacks. Too bad it failed...

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3255
   Posted 4/15/2011 4:26 PM (GMT -6)   
I had Remicade infusions for about a year. I had no side effects at first from the infusion with the one exception that it made me extremely tired for about 2 days. I just wanted to sleep.  Then at the 3rd infusion I broke out in hives. They gave me a shot of benadryl and I was fine. Each of the infusions after that they gave me a good dose of benadryl before starting the infusion and I didn't break out with them again.

Most people start feeling better fairly quickly. It didn't work for me so I got no relief from my UC symptoms while on it. I had to have surgery. My mom is on Remicade for her RA and it works great for her.
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy)6-25-10
Step 2: Take down surgery (Ileostomy reversal)10/8/10
Very pleased with my results

WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 4/16/2011 12:03 PM (GMT -6)   
I had my first infusion of remicade in July 2009.  I wasn't pre medicated my first infusion.  The max speed they go is 150 and when I got to that top speed.  I got chest pains and dizzy and I felt like I was going to pass out.  They gave me bendryl and tylenol and slowed down the infusion.  I was still having the problems so they stopped my infusion.  I got through maybe half my bag.  We tried it again but I was pre medicated with tylenol and hydrocrotisone(sp?), i get very dizzy and tired from the bendryl so we use that instead.  I also get my infusion very slow.  I don't go above 65.  I get there at 9 and am done at about 2:30-3:00.  I still got the chest pain but it was managable, we figured out after alot of heart tests,etc. that it was heartburn(a side effect) from the remicade.  So, I'm on prilosec twice a day for that.  It works but every once in awhile I get heartburn really bad still and then I take tums and I'm okay.  I also get a rash about two weeks after my infusion so I take zyrtex once a day all the time.  I was at 5kg from July 2009 every eight weeks until Aug. 2010 and they upped me to 7.5 kg every eight weeks.  This is when I started getting joint pain.  I live with it but it does hurt sometimes.  I feel like an old lady at times.  The reason I was upped to 7.5 kg is because when they did a scope in jan. 2010 my colon wasn't healing from the remicade.  The remicade helped my symtoms after about three infusions.  I was going D about 10-15 times a day with reallly bad urgency and alot of accidents.  I was horrible when I started the remicade.  Since the third dose I go about 4 times a day with no accidents since starting it(knock on wood lol).  I am still very tired.  This is my number one complaint.  So, when they did the scope in jan. 2010 and said my colon wasn't healing they wanted me to go off it.  I said give me some more time.  I don't want to go off it I feel so much better and i have a life now.  She said I will give you 6 months.  Well, i had a scope done in Jan 2011 and my colon went from severe uc thoughout to no uc on my left side and mild inflammation on my right.  So, I would give it time.  It has worked wonders for me.  I can go places with my kids and go for walks and car rides.  I also can figure out when I will have to go to the bathroom, mornings are bad for me, once after lunch and usually I don't go from lunch until the next morning.  Once in a while I will go once after supper.  I can pretty much eat anything.  I do notice that coffee and milk products give me bathroom issues but I usually go once after eating or drinking them and I am fine.  I still worry about the bathrooms (like when we went on a trip to Chicago, walking around downtown and going on boat rides) but I was fine.  It is more in my head.  I like my infusions also because I do homework, take a book and sleep.  It is my me time(pretty bad huh?).  I'm telling you this about the side effects because while I do get them I live with them because they are better than not being on the remicade.  I have been on it almost two years now and it has been a god send.  I hope it works for you.  Sorry for the long post. lol
On remicade since July 2009, Upped my dose in August 2010 to 7.5kg
Currently taking:Calcium Citrate, Vitamin D and Vitamin B12 shot(monthly, myself), Zinc, Magnesium, Zyrtex, Prilosec, Fish Oil, Levothyroxine, and a Multi Chewable Vitamin
Had a scope on 1-11 and my left side is completely healed and my right side has some mild inflammation and ulcers. The remi is working!!!!!

pain-in-the-butt
Regular Member


Date Joined Apr 2011
Total Posts : 52
   Posted 4/16/2011 3:12 PM (GMT -6)   
@ wimomofthree

thanks for being so thorough. i too have been going 15 times a day and willing to deal with the side effects than having constant BMs...thanks for the info..this disease is just as much psycological as it is physical.....im glad to hear your positive story.......

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/16/2011 7:56 PM (GMT -6)   
I noticed within two days that Remicade was working. (while it did work) The blood completely stopped!
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, codeine, Xanax, Imodium. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine, Vicodin, tramadol, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

OeOoo
New Member


Date Joined Mar 2011
Total Posts : 10
   Posted 4/16/2011 9:22 PM (GMT -6)   
I was on it for over a year and it worked for me right away. I took a Zyrtec the night before and a tylenol right before the infusion. Never had a problem with anything until I developed anti-bodies to the mouse protein. I just started Humira last Thursday, hopefully I'll be able to take that with any issues.

Remicade is great. I did have some joint issues for awhile, but over time they diminished greatly. Hope it works for you!

Ugh Just Ugh
Veteran Member


Date Joined Jan 2010
Total Posts : 1004
   Posted 4/16/2011 10:13 PM (GMT -6)   
I am really tired the evening after the infusion and I think the upper right abdominal pain I'm experiencing is related to Remicade but I'm not sure. I felt it really kicked in right around infusion 4 although I'm still not 100% I *think* because my infusions need to be closer together. The infusion itself is not a big deal. A little boring. I usually put a movie on my iphone to watch. :o)

krm8
New Member


Date Joined Apr 2011
Total Posts : 16
   Posted 4/20/2011 10:54 PM (GMT -6)   
Hi, I am new to the forum. Just signed up tonight as a matter of fact. I have had UC of my entire colon for about 20 years. In the beginning I was having at least 2 flare ups each year, but most of the time it's 1 each year. I have been in remission for about 2 years , but a flare up started again this January. I have tried just about all of the medications and nothing works for me. The Asacol makes my symptoms worse. Mercaptapurine (spelling) gave me pancreatitis. The only medication that I can take is prednisone (and we all know what that drug does to you) I just had a flex sig yesterday and am still pretty inflamed and bleeding. My doctor and I have discussed Remicade and he is requesting authorization. I am nervous about taking it because of all the side effects and reactions I have had with all the other meds, but on the other hand, I am really not ready to have surgery. Unfortunately, if the Remicade does not work, surgery will probably be my only other solution.

Anyway, thanks for listening I mean reading. If anyone has any comments about starting the Remicade, please let me know. Also, if you have any suggestions on any natural remedies that have worked would be awesome.

Thanks,

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10349
   Posted 4/20/2011 11:48 PM (GMT -6)   
Hi Krm,

I am sorry to hear what a tough time you're having with your UC. Have you considered trying any alternative therapies? There is a sticky thread on the top of the board called resources that contains a list of potential treatment options, both medical and alternative. There may be some other options worth trying before surgery if you're not ready for surgery. On the positive side, surgery can be a great option. I've been seeing a lot of members come back after j-pouch surgery and say that they are extremely happy with the results and that they regret waiting so long to have surgery. I am scared that Remicade may be my last option too and I don't like to think about it because I am not sure Remicade is a long term solution, most people I've seen taking it have only taken it for a few years maximum before it became ineffective. That may be the case on here more so than in the real world, I am not sure. I hope you find some relief soon.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa + 6mp + Allopurinol | Currently: stable - Asacol (3200mg) + 6mp + Ponstel

UC Stevie
New Member


Date Joined Apr 2011
Total Posts : 9
   Posted 4/21/2011 1:27 PM (GMT -6)   
I just had my first Remicade loading infusion (400) a week ago today. I too was nervous about starting it because I wondered if it would even work for me and of course was considering the known possible side effects.

I have had an amazing response to it and am glad I chose to try it. The comfort level I have reached within just the first week is nothing short of a miracle. I'm really hoping that the response lasts for a long time but will be preparing other maintenance plans in the case that it eventually becomes ineffective.

krm8
New Member


Date Joined Apr 2011
Total Posts : 16
   Posted 4/21/2011 10:33 PM (GMT -6)   
Thank you, notsosicklygirl and UC Stevie, for the feedback. I will definitely check out the resources for other treatment options. Not sure when I will be starting the Remicade as I still need to get authorization from my insurance. UC Stevie, I hope the Remicade continues to work for you.

Thanks again.
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