starting remicade

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mtgman
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Date Joined Mar 2005
Total Posts : 1289
   Posted 4/1/2010 9:39 PM (GMT -7)   
1st infusion monday afternoon.  any thoughts, tips, suggestions etc?
pretty nervous but it's time.
 
thanks!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently tapering prednisone (15 mgs) and I've been on 6_MP for 2 months.
In the middle of a bad flare now for 6 months...lost almost 30 lbs.


mtgman
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Date Joined Mar 2005
Total Posts : 1289
   Posted 4/1/2010 9:47 PM (GMT -7)   
oh yeah- forgot to ask...how long before most people have noticed any results/changes with remicade?
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently tapering prednisone (15 mgs) and I've been on 6_MP for 2 months.
In the middle of a bad flare now for 6 months...lost almost 30 lbs.


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 4/1/2010 9:57 PM (GMT -7)   
I was so nervous before my first infusion and it really was a piece of cake. Don't stress too much (easier said than done, I know!).

I had Remicade over the span of 2.5 years and 3 different GIs so they all did it a little different. Some GIs will do premeds like Benadryl in case of reaction. 2 of my GIs said medicating "just in case" was unnecessary but 1 wanted me to do it. I refused. When I actually DID react, 2.5 years into the infusions, Benadryl was administered immediately and it was fine. I don't think it's necessary but you can talk with your GI about it. If you get Benadryl, you'll be loopy and may want to just sleep. Since I didn't get it, I brought my laptop, movies, food, books, etc and either worked, studied, or caught up on my reading dependant upon the time. some places have TVs, too, that you can watch.

They will likely go really slow so expect to be there longer than future infusions. When I received it in the hospital, it took 1-2 hours more because I had to wait on the pharmacy to send up the meds. When I received it in the doctors office and infusion center, they got started on it as soon as I got there.

I was usually pretty tired after mine but no other issues. Sometimes I went back to work/class but sometimes I went home and took a nap. I'd clear the schedule the rest of the day if you can.

I saw a change within a week or two, but that's pretty unusual I think. I hope you see relief soon - I was in the middle of a big flare, too, when I started and it was a miracle drug for me. It gave me my life back.

mtgman
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Date Joined Mar 2005
Total Posts : 1289
   Posted 4/1/2010 10:04 PM (GMT -7)   
thanks so much!!! makes me feel better going into this!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently tapering prednisone (15 mgs) and I've been on 6_MP for 2 months.
In the middle of a bad flare now for 6 months...lost almost 30 lbs.


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 4/1/2010 10:21 PM (GMT -7)   
There's not much to it. I get premeds of a couple Tylenol and a Benadryl, they start the IV, and I take a nap or listen to my iPod. The only bad thing about it is it can cause rapid healing, leading to scar tissue formation and an obstruction. But if inflammation is that bad, the youknowwhat is going to hit the fan sooner or later anyway. Other than that, it keeps any new inflamation form starting (seen via CT scan and surgery) and helps quite a bit with symptoms.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 4/2/2010 4:22 AM (GMT -7)   
Pre-meds are a good idea, for peace of mind if anything, my GI said they don't cause any harm but could prevent harm being done!
I usually notice a significant improvement within 24-48 hours and a week later will usually be well on my way into remission, I hope it works as well for you!
 
 


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 4/2/2010 4:59 AM (GMT -7)   

Mtgman.....I was like you.  When I went for my first infusion, I was so nervous.  I heard all these horror stories about breathing problems, and people having reactions.  When I got to the center, I had to wait for a chair..which didn't bother me because I was so nervous.

Eventually I got a seat and the nursing staff was real nice.  They hooked my IV up, I laid back, and then.....nothing.  I sat there for about 2 hours and then the IV was done.  I remember thinking "This is what I was scared of?" 

As far as how long it will take to feel results, everyone is different.  I felt the results the same day.  I got back all my energy.  It felt like a shot of B-12.  Also, my trips to the bathroom went down drastically.  But not everyone is like this.  Some have pain afterwords.  Some get tired.  I can't say how you will feel, but don't worry about anything.

My only suggestions is to bring a good book with you and your iPod.  Where I go, a lot of people bring their laptops and some watch movies.  I would say bring something to keep your mind busy and off the IV.

Also, don't worry so much about the pre-meds.  I know a lot of people on here tell you to take Tylenol and Benidryl.  I have never taken these before an infusion.  Where I go, they give you only 15minutes worth first to test you.  If you feel something, then they will give you something for it.  I don't know where you are or how they do it by you, but I like this way better.  No need to take unneccessary meds if I don't need them.
 
Good luck and let us know how it went.
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily, Loperamide HCL - 2mg every other day


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/2/2010 8:29 AM (GMT -7)   
Hi. My husband has now been on remicade for 2 years. He has to be premedicated with tylenol, benedryl and 40 mgs of solumedrol. He needs the solumedrol, because without it, he gets horrible joint and muscle pain and fever for a couple of days post infusion. But with these pre-medications, he does fine. He feels a little fatigued and has some muscle soreness for a day and half after the infusion, and then, he's fine.

He actually looks forward to his infusions - he usually schedules them for Fridays, and takes the day off work. He takes a book with him to read, but I don't think he gets very far, because the benedryl makes him sleepy. He says it's pretty relaxing. I went with him to a couple of infusions so that I felt confident of the setup - that if something happened, like a really bad reaction, they'd be able to take care of him.

The Remicade nurses are well equipped to deal with emergencies - they have all the equipment, and every patient is hooked up and their vitals monitored carefully during that time. Also, the nurses told me that they only do infusions when there is a doctor onsite available immediately for any emergencies. So, I feel pretty good that should he have a bad reaction, it'll be scary, but he'll be ok. I think this is pretty much the setup for all Remicade infusion centers.

Remicade has really been a fantastic drug for my husband so far, knock on wood while crossing my fingers :-D. I hope you get a lot of relief from it.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/2/2010 8:29 AM (GMT -7)   
Oh, I forgot to mention, my husband saw significant improvement after his second infusion.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/2/2010 11:09 AM (GMT -7)   
Hi, I too saw improvement after 1st infusion you will be fine the nurses will keep a close eye on you really hope it works for you. Bev x wink
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


FunGuy
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Date Joined Oct 2009
Total Posts : 1070
   Posted 4/2/2010 5:14 PM (GMT -7)   
Positive thoughts only there my friend. This IS going to work well for you.
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 4/2/2010 9:44 PM (GMT -7)   
thanks all!! i really appreciate it. i'm so excited. i can't wait until monday!! i'm praying this works so i can start doing the little things again like going to get ice cream with my 4 year old daughter!! i'll keep you all posted. have a happy easter and great weekend!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently tapering prednisone (15 mgs) and I've been on 6_MP for 2 months.
In the middle of a bad flare now for 6 months...lost almost 30 lbs.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 4/23/2010 7:41 PM (GMT -7)   
so 4 days after my 2nd infusion and i still feel terrible- bleeding and all...oh well i guess itr wasn't the 1 dose miracle for me...still keeping my fingers crossed though!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


1asalsa
Regular Member


Date Joined Feb 2010
Total Posts : 40
   Posted 4/24/2010 8:28 AM (GMT -7)   
Don't get discouraged; I did not see a significant improvement till a couple weeks after the 3rd infusion, and Remicade has been the only thing that worked for me so far!

davidblink
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/24/2010 3:00 PM (GMT -7)   
I just had my first injection a week ago and so I am trying to see what effect it will have. So far I still have pain in the gut at about 4-5 on a scale of 10. I've noticed that my temperature will jump up to almost 100 the last two days.
Dx with Crohn's Feb 2009. But was told that I had probably had it a long time.
Flare-up Mar 20, 2009 sent me to hospital where I perforated and got emergency ileostomy. Took down ileostomy on Jan 5, 2010. First Remicade treatment in a week.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 4/24/2010 4:16 PM (GMT -7)   
keep the advice and experiences coming! thanks!! i have an appt with my GI monday to chat. i asked him if i could do a short course of pred for a few days. he called me back and said go for it. he said 40 i decided on 30...we'll see. have a great weekend all!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 4/24/2010 6:44 PM (GMT -7)   
i was told that it can take up to 6 months until the remicade works. prednisone is a good idea to help you along. Patience dude.
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 4/24/2010 8:02 PM (GMT -7)   
haha.  i've never been a patient guy-- going to try real hard to learn a bit though.
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.

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