Remicade November 3rd- I am sooooo scared; Anyone with allergies do OK on this stuff?

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miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 10/16/2008 11:09 AM (GMT -7)   
I've been fighting for so long trying to not take drugs for this DD. Been on Entocort lately, but it only worked for about a week and a half and my arthritis is now back with a vengeance and the guts are not so hot either (fistula, abscess, stomach pains, weight loss.) Doc says Remicade is better for me than any sort of steroid due to my diabetes. Still, I am SO scared of all the potential side effects from Remicade. I am so allergic to so many things. They are gonna give me IV Benedryl before the infusion, but I keep envisioning my airway swelling up and doing me in. Yeah, maybe it's irrational, but when a tree nut will kill you or a piece of fish, it's hard not to get freaked out right now.

Anyone with lots of food allergies done well on the Remicade? Anyone that loves Remicade please tell me how it helps you. All I want to do is cry now. I am so scared and can't believe my life has come to this.

P.S.- did you see any relief from arthritis on this stuff? I can deal more with the GI stuff right now. The arthritis is just out of control. Thanks.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Entocort 3mg 3x daily (messing up my bloodsugars pretty bad.)

Post Edited (miguelblanco) : 10/16/2008 12:13:55 PM (GMT-6)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 10/16/2008 11:48 AM (GMT -7)   
Remicade gave me my life back! I honestly could not function before I started.....abscess, fistula, weight loss, crohns arthritis so bad!) I actually go tomorrow for another infusion. This Dec. will be my 4th anniversary on it. I do everything now, and eat everything. I have an occassional bad day. Was I scared out of wits to start...absolutely! But I was desperate, and it changed my life. I take a benedryl and a tylenol 30 minutes before. The nurses now what to do if something happens, and they have oxygen and emergency stuff to take care of things...at least my infusion center does. If it makes you fell better, I would call and talk to one of the nurses and ask what will happen if I do have a reaction. I always take somebody with me when I go, that way if something happens, I can get immediate attention, and they will know what goes on.

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 10/16/2008 12:10 PM (GMT -7)   
chroniemomx2 said...
Remicade gave me my life back! I honestly could not function before I started.....abscess, fistula, weight loss, crohns arthritis so bad!) I actually go tomorrow for another infusion. This Dec. will be my 4th anniversary on it. I do everything now, and eat everything. I have an occassional bad day. Was I scared out of wits to start...absolutely! But I was desperate, and it changed my life. I take a benedryl and a tylenol 30 minutes before. The nurses now what to do if something happens, and they have oxygen and emergency stuff to take care of things...at least my infusion center does. If it makes you fell better, I would call and talk to one of the nurses and ask what will happen if I do have a reaction. I always take somebody with me when I go, that way if something happens, I can get immediate attention, and they will know what goes on.

Thanks so much. I'm at the desperation point too. I can barely walk, dress, drive my car, etc.
I have to go in on Monday for my TB/Manto (sp?) test. Maybe I'll ask to see the infusion center while I am there and see if I can talk to one of the nurses. I've heard about taking Tylenol prior to the infusion for possible headaches, so I'll definitely be doing that. Being they are going to give me IV Benadryl, they said I'll need a driver with me, so I'll definitely have someone there with me. (Probably good 'ol Mom. She's a Chronie too.)
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Entocort 3mg 3x daily (messing up my bloodsugars pretty bad.)


RK
Regular Member


Date Joined Oct 2006
Total Posts : 153
   Posted 10/16/2008 12:40 PM (GMT -7)   
It's perfectly normal to be scared about something you have never tried before. I was completely freaked out when my GI decided it was time for Remicade. I had read about the side effects and the bad reactions and I almost put myself into a panic attack during my first infusion. I too was having visions of bad reactions. But it was simple fear of the unknown. As chronniemomx2 said, Remicade has changed my life.....for the better. I had my 4th infusion this past weekend and continue to feel better than I have in 10 years. It's quite amazing actually. No more running to the bathroom twenty times a day, no more pain, no more fatigue. I eat everything and feel great. My fistula has completely healed.
 
There have been many posts on this topic already. Do a search and you will see that some people have positive reactions while others, unfortunately, do not. It's one of those things you just have to experience for yourself to see. Keep in mind that being allergic to nuts and fish doesn't mean you will have a reaction to everything else. But having gone through this myself I know that nothing anyone says can really alleviate the fears until you have the infusion and everything goes well. I wish you luck! And remember, breathe in slowly through your nose and out through your mouth. It helps with the anxiety. :)
32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 1g x 4 times daily. Started Remicade July 2008.


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 10/16/2008 1:37 PM (GMT -7)   
I was terrified my first infusion, too. Which of course made my symptoms even worse!

I had no premeds and no issues at all until I was on it over 2 years and built antibodies to it.

They really watch you very closely, and you're in a place where you can receive medical attention if needed. I've yet to hear of anyone dying from an infusion.

It made my arthritis go away - and gave me my life back. I went back to eating anything I wanted, never having pain, and living a normal life. Remicade was a God send for me.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/16/2008 1:50 PM (GMT -7)   
Well this might sound a little weird but I was thinking about mice when I got my first one and it was good for my fistula's as well as the boost in the B-12 I took . I always had a good BM just after the infusion I had an abdominal fistula at that time and it started to bleed during a infusion amazing I thought how fast it worked. Good luck and give our good wishes to your Mom .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/16/2008 2:52 PM (GMT -7)   
I was very scared also. I had my mom and dad take me! You should be just fine. The clinic should be prepared if any emergency were to arise. I get Decadron 15 minutes before my infusion. I also take 2 extra-strength Tylenol 1 hour before the infusion and right after the infusion. I don't need Benadryl, but that should help prevent a reaction. Good luck to you!!:)
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 10/16/2008 3:36 PM (GMT -7)   
Yes, as somebody did mention. They monitor you very closely. I get my vitals taken every 30 minutes, and you have a call button for a nurse. My infusion center is pretty open. The nurses desk is right in front of everyone, so I could just yell to them if I needed them. :)

kam#7
Regular Member


Date Joined Jun 2008
Total Posts : 125
   Posted 10/16/2008 8:08 PM (GMT -7)   
I have lots of allerigies, and I did fine with my infusion of remicade. Also, like chroniemom said, you are monitored very closely.

Just bring something to read - I am a big fan of reading trashy magazines when I am nervous. Nothing passes the time and keeps me calm like looking at pictures of celebrites without make-up :-)

On a more serious note, tell the doc about your nervousness - he might give you something to take the edge off.

Keep us posted and know that you will be in my prayers.
35 year old female - Diagnosed w/Crohn's 2002 - Surgery 2004

Currently taking: Pentasa, Entocort, Imuran, Immodium, Zoloft, Wellbutrin, Seroquel


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 10/18/2008 11:55 AM (GMT -7)   
Hey, thanks to everyone for the encouragement. It's tough to not feel "defeated" by all of this. I am hopeful it will all be worth it and I can return to some semblance of a "normal" life. Hopefully I won't be too nervous the day of. idea
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Entocort 3mg 3x daily (messing up my bloodsugars pretty bad.)


Tj1
Regular Member


Date Joined Jul 2008
Total Posts : 71
   Posted 10/18/2008 2:45 PM (GMT -7)   
I have the same allergies as you. Fish, Cashews, asacol, bactrim. I'm going for my 4th infusion on Friday everything has gone fine. The last two I didn't get the benedryl or Tylenol either. It's ok to be nervous. I still am each time I go.
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 
 allergic to Asacol
 Colazal made it worse
 Prednisone 20mg X2 daily   
 Flagyl 500mg X2 daily
 First Remicade infusion 8-9-08
 
 Toprol XL --  Hypertension
 Insulin   --   Diabetes 


Ltordo
Regular Member


Date Joined Feb 2007
Total Posts : 33
   Posted 10/18/2008 3:06 PM (GMT -7)   
I have been getting Remicade for 13 months now.
It has put me into remission, and sometimes I even forget I have the DD.
I can eat and drink anything I want to now.
Dairy used to make me feel feel nauseous, now I can drink milk, etc.

I have one firm and formed bowel movement a day now, compared to
15 times a day before the Remicade.
The Remicade has also closed my 2 fistulas.

I was terrified like you when I went for my first infusion, and not a thing
happened to me except I felt great afterwards.

I hope the Remicade works great for you, and puts you into remission.

Good Luck!
Dx with Crohn's-Colitis January 2007
Meds: Remicade, Aciphex


ctrysinger
Regular Member


Date Joined Oct 2008
Total Posts : 30
   Posted 10/18/2008 4:43 PM (GMT -7)   
I took allergy shots when I was younger. I recently was retested and showed little/no allergies to the most common things people are allergic to. I just had my fifth infusion of Remicade. I did perfectly fine the first four times but had a horrible allergic reaction this last time. I've never had horrible allergies or anything like that. So I didn't know that the reaction I was having was an allergic reaction. My whole body got very hot and red in a matter of about 15 seconds. My chest tightened and I could hardly breathe. I started feeling dizzy and said "I feel funny" to the nurse. They turned off my IV, gave me more meds, and then restarted the infusion at a slower pace. I was fine the rest of the time, but have been itching ever since. I called 911 about 10 days after the infusion because I had the same kind of reaction that I had at the hospital. It's 4 weeks later and I'm still itching. My doctor wants to try the Remi one more time with different premeds this time. I'm used to feeling sick, throwing up, anything of that nature... but this whole not breathing thing was a completely different experience. It is rather uncommon to have an allergic reaction to it (or so I've been told). My advice is to try it. The Benadryl through IV should help. There should be plenty of nurses around, so you will be fine. It is most common to have a reaction during the first or second infusion, but some people don't have a reaction until years later. You should be fine. GOOD LUCK!

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 10/21/2008 10:03 AM (GMT -7)   
Tj1 said...
I have the same allergies as you. Fish, Cashews, asacol, bactrim. I'm going for my 4th infusion on Friday everything has gone fine. The last two I didn't get the benedryl or Tylenol either. It's ok to be nervous. I still am each time I go.

I see you have diabetes too. Any affect on your bloodsugars from the Remicade? My GI said it shouldn't cause any problems in this regard, but I am curious.
The Entocort I'm on now messes up my bloodsugars.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Entocort 3mg 3x daily (messing up my bloodsugars pretty bad.)


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 11/4/2008 1:40 PM (GMT -7)   
Hey all,

Just wanted to poke my head in and say all went well yesterday with the Remicade infusion (what a relief.) No allergic response or anything (pre-medicated with 50mg Benadryl to be on the safe side.) Met a couple nice people that were getting their infusions and had good results each for two years, so that was encouraging. I think I'm already feeling better! My hands and feet don't hurt nearly as much, I was able to sleep the night through, and I even took the dog for a 2nd walk last night because it was such a beautiful evening. smilewinkgrin I was supposed to contunue to take my Entocort for the next 2 weeks, but I had weened myself down to 3mg in the morning, and I even stopped that this morning I felt so good. (Shh... don't tell my GI.) Steroids have been hell on my bloodsugars being diabetic. The sooner I was off them, the better. Had a fairly normal BM this morning, and bleeding/drainage has been to an absolute minimum today.

Thanks again to everyone for their words of encouragement and your experiences. Now to get healthy and get ready to play some golf in the Spring!

yeah
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Entocort 3mg 3x daily (messing up my bloodsugars pretty bad.)


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/4/2008 1:44 PM (GMT -7)   
I am so happy to hear your Remicade treatment went well!!:-) However, PLEASE be careful with your Entocort. Tapering too fast can be extremely dangerous.... I would encourage you to finish it as the doctor said, tapering it over the next 2 weeks. The best of luck to you! Blessings, Julie
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 11/4/2008 1:50 PM (GMT -7)   
Julie1014 said...
I am so happy to hear your Remicade treatment went well!!:-) However, PLEASE be careful with your Entocort. Tapering too fast can be extremely dangerous.... I would encourage you to finish it as the doctor said, tapering it over the next 2 weeks. The best of luck to you! Blessings, Julie

Yeah, I know. tongue I haven't been on the Entocort very long. Maybe 3 weeks? It was just a stop-gap until I got on the Remicade. I had been on just the one pill for a week already. I honestly just couldn't take my bloodsugars being out of control any longer. Absolute worst drug ever for a diabetic. I really take care to control my diabetes, and can't stand that drug messing it all up. High bloodsugars can cause weight loss for me very quickly, and I've lost about 25 pounds since May. I need to eat and be in control of the bloodsugars to gain some of this weight back. smilewinkgrin
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Entocort 3mg 3x daily (messing up my bloodsugars pretty bad.)


malb
Regular Member


Date Joined Oct 2008
Total Posts : 33
   Posted 11/4/2008 2:21 PM (GMT -7)   

Hi

As I've mentioned in a previous post Remicade and Methotrexate have worked miracles for me! I had been in a flare for two solid years, down to about 94 lbs, usng my canes for the spondyitis, and truly believing that these diseases were robbing me of my life. My Crohn's and the arthritis are both in remission, I haven't used the canes in 18 months and now weigh more than I have in twenty years. Oh, and I also have anaphylactic food allergies like you do. Hope you do as well on the Remicade. I'll keep looking for updates.:)

Michael


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/4/2008 5:18 PM (GMT -7)   
Hi That is good news so glad things went good, I met some nice people when I got mine too. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 11/4/2008 6:19 PM (GMT -7)   
malb said...
Hi

As I've mentioned in a previous post Remicade and Methotrexate have worked miracles for me! I had been in a flare for two solid years, down to about 94 lbs, usng my canes for the spondyitis, and truly believing that these diseases were robbing me of my life. My Crohn's and the arthritis are both in remission, I haven't used the canes in 18 months and now weigh more than I have in twenty years. Oh, and I also have anaphylactic food allergies like you do. Hope you do as well on the Remicade. I'll keep looking for updates.:)

Michael

So glad it worked for you Michael! Yeah, it was scary thinking about possible reactions. I just finally had to convince myself that the nurses have seen it all and could handle it if something were to happen. The arthritis has really been the worst part of this for me. I've always been active and athletic, so I have been really down emotionally as I hobbled around and could barely get up and down the stairs. I sure hope we continue to improve! I've been in a flare for two years too, and it just got to the point I couldn't stand it anymore. I had to try this. So far, so good!
I just rammed a buffalo burger on a gluten free bun, organic romaine and tomato, organic oven french fries, fresh cantaloupe, and homemade lemon bars down my throat! yeah I have so much eating to catch up on!! tongue turn
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Remicade (First Infusion 11/3/08) yeah


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/4/2008 7:26 PM (GMT -7)   
Good for you! Eat away! :)

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 11/4/2008 9:32 PM (GMT -7)   

Miguel,

I am so happy to hear it went great for you!!  I sincerly hope Remicade works for and helps you!

Reading your post has helped put my mind at ease some, since I may end up on Remicade in the future.  :-)

Take care and please keep us posted on how your infusions go!

 


malb
Regular Member


Date Joined Oct 2008
Total Posts : 33
   Posted 11/4/2008 11:29 PM (GMT -7)   
Miguel

Good for you ! I hope things only get better and better for you. These diseases can get you down pretty low... good doctors, knowledge, a sense of humour and a good support system will get you through! Good luck and keep us posted on how things are going.
Michael
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