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chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 3/25/2010 3:15 AM (GMT -7)   
I had my last infliximab infusion yesterday. I've been on it for a year and we have finally admitted it just isnt working like it should. So i rock up to the room to get set up, now infliximab wore off 3 weeks ago so i was not my normal self. The nurses wanted a doctor to look over me to be sure it was just the crohn's. Doctor arrived and was lovely. Listened to my chest ect, i then discovered my CRP level is 74 and usually is about 50. Whoops!
 
So i get the go ahead for infliximab to be run through. I was on my 3rd double dose so it was being run in over 2 hours. I get hooked up and off we went. For a grand total of 15 minutes.
 
First i got super hot, then my heart started palpatating. I turned to a nurse and by the time i said i'm really hot my chest was getting tight. The nurse dived over me and stopped my IV, and yanked the emergancy cord. Alarms going off everywhere, and suddenly i had 5 nurses. My chest was really tight, i couldnt even talk cos i had no breath. I went a very sexy beetroot red with a tinge of blue. I think i looked like a really sunburnt smurf! So in comes the crash trolley, an O2 canister bigger then the chairs and i got pumped with more hydrocortisone and chlorphemarine (sp?). Lots of blood pressure checks, and o2 sat checks. Fortunately within 15 minutes my chest started to loosen up, but the nurses were still standing by with a nebuliser to add to the o2 i was already on.
 
Fortunately i had pretty much returned to normal and was off o2 within 30 minutes of the first symptom.
 
I had to hang around for a few hours afterwards but i had no sign of the reaction returning. So i returned home, my mom drove me back, and i had some dinner then slept for 12 hours!
 
I dont write this to frighten anyone, i want people to know that yes reactions are REALLY scary, but trust in your nurses. They will sort you out. They couldnt believe i reacted after a year of it. Still, i'm moving on to humira and am currently awaiting my first delivery!!
 
I feel 100% normal today. I would like to say a MASSIVE thank you to the nurses at York Hospital MES outpatients, England, for their superb care yesterday. A couple of tins of chocolates are on their way!!
Dx - Crohn's - 2006, Depression = 2010
Currently - infliximab double dose 8 weekly, iron tablets, B12 3 monthly, prenatal vits+minerals
Tried - aza, pentasa, questran
No crohns' surgeries to date, Episcleritis for 3 weeks,
Doing BSc (Hons) degree Equine Science - some support from uni. This year has had to be split in to two. Starting Humira shortly!! fingers crossed this will beat crohn's into submission!! I WILL WIN!
I AM ME NOT CROHN'S!


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 3/25/2010 5:12 AM (GMT -7)   
OMG that sounds scary!!! Thank goodness for good nurses! Tin of chocolates is a good idea, I have a lot of friends who are nurses and it absolutely makes their day when people/patients show how grateful they are for their hard work - they're absolute saints doing what they do here!
Just out of interest did you get steroid and antihistamine beforehand? Really hope the Humira works out for you, best of luck with that!
 
 


chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 3/25/2010 5:30 AM (GMT -7)   
yeah i had 100 mg of hydrocortisone first. Never had any problems with infliximab before. I was so lucky, although i did frighten the other patients. Poor things, one guy was sat in the chair next to me, and he had to move rather quickly. Felt rather sorry for him!
Dx - Crohn's - 2006, Depression = 2010
Currently - infliximab double dose 8 weekly, iron tablets, B12 3 monthly, prenatal vits+minerals
Tried - aza, pentasa, questran
No crohns' surgeries to date, Episcleritis for 3 weeks,
Doing BSc (Hons) degree Equine Science - some support from uni. This year has had to be split in to two. Starting Humira shortly!! fingers crossed this will beat crohn's into submission!! I WILL WIN!
I AM ME NOT CROHN'S!


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 3/25/2010 5:43 AM (GMT -7)   
I always get the fear of reactions from infliximab as I only have one or two doses every year or so, so I know my risk is higher than average, at least I have good faith in the nurses though if it were to ever happen but it would just suck if it meant I could never have it again! Aww yeh I bet that really freaked the other patients out, sometimes when I've had it theres a range of different patients having infusions of different meds for different illnesses but sometimes we're all Crohnies having the same - bet that really would create some panic! But I'm sure it would have been reassuring for them to see how efficient the staff were.
 
 


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 3/25/2010 6:30 AM (GMT -7)   
So glad to hear that you are alright.  Every time I go for my infusions, I wonder is this going to be the day the resistance starts.  I already feel like it isn't really helping, but my dr says it is healing me...so I continue on.  The last time I went, the man next to me started haveing some pain and shortness of breath.  The nurses were very calm.  They gave him some antihistamines and that seem to work. I was a little happy that he started having the problems just as I was fininshing, so If anything bad did happen, I didn't get to see it.

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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/25/2010 6:34 AM (GMT -7)   
Wow that had to be scary!! I am glad you have recovered well. I hope the Humira does the trick for you.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

What A Life
Regular Member


Date Joined Mar 2010
Total Posts : 116
   Posted 3/25/2010 7:13 AM (GMT -7)   
Sometimes the nurses (they did it to me before as well) put a dose of benadryl straight into the IV. It's supposed to help prevent some of the reactions/allergies associated with infliximab. However; I took it because it "knocked you out" and next thing you knew, your IV drip was practically empty! :-)

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 3/25/2010 9:58 AM (GMT -7)   
Hi I too had a similar reaction half way through a second infusion not as bad as you just the hot feeling and not being able to breath, once they stopped it within the hour felt normal again It was pretty scary though. Bev x
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."


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/25/2010 10:30 PM (GMT -7)   
Not being able to breath is the scariest feeling one can have.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

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