Had to quit the Remicade

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isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/15/2009 3:03 PM (GMT -7)   
I had a really crappy day today!!

I got to the hospital at 11 am to get my 6 th remicade infusion. My nurse greeted me and started to put up an IV in my arm she tried 5 times before I said that I wanted to try another nurse, the other nurse came in tried two times and then called a anesthesiologist he had to do it 3 times before he found a wain. So it to TEN tries to get it right. I wanted to cry. My veins where so fragile and swollen.

Well finally I could start the Remi I was really excited because I felt so good after the last infusion and I have been felling kind of crappy the last couple of weeks. So I could not wait to feel batter.

After about 4 min not even that, my back started itching like crazy so I asked the nurse to scratch my back because I could not reach the spot.
Well 10 seconds later my body was on fire it itched so much and I had trouble breathing. So the Remi was stopped right away and I got painkillers and Steroids in the IV. A few moments later my body got blisters all over.

It was the most creepy thing I have been trough. I have always been afraid of remi but knew that it was worth it and I don't have any regrets trying it.
I had to be at the hospital for 3 hours and then I could go home. My doc said that he would not like me to get remi again.

I am so disappointed and sad about this I was feeling so good and was looking forward to feeling so much better. and all the other 5 infusions of remi went great it sucks that it happens so late on in the treatment.

Now I think we will try humira and see how that works. It just feels like I cant catch a break :(

Hope you are all feeling good.
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
Crohn's disease in December 2008 Then they changed it to UC in June 2009.
and Autoimmune Hepeatitis in July 2009


Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


macracer
New Member


Date Joined Sep 2006
Total Posts : 3
   Posted 10/15/2009 4:08 PM (GMT -7)   
Our son age 24 has been on Remicade for about 3 years with little side affects. We are concerned about the possible long term side affects including lyphoma and colon cancer. I not sure you are not better off on Humira but I look forward to hearing from you how you are doing.
 
The fact you have felt good on Remicade explains why he likes it so much and doesn't want to change. His Drs. wanted to increase him to 10 mg from 5 recently because of increase in bowel movements. We have encouraged him not to increase the dosage.
 
 
 
 
 
 

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/15/2009 4:38 PM (GMT -7)   
It think that If remicade helps it is a wonder drug for all people who suffer from CD and the docs take real good care of people on remi so I would not worry If he feels better that is what matters .

There are so few who get lyphoma and cancer from remi and the feeling of begin okey is totally worth it ;)

Hope your son will have many good years with remicade.
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009
And now they think I have Lupus :S

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 10/15/2009 4:52 PM (GMT -7)   
I had an allergic reaction to remicade too. It's scary!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: Humira since 7/08, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/15/2009 10:06 PM (GMT -7)   
Sorry to hear this happened to you Isergodur.
It sounded so promising for you,
Hopefully the Humira wont have the same effect - good luck with this.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 10/15/2009 10:15 PM (GMT -7)   
Good luck on the humira! It's helped me, but just remember it takes a bit of time before you even notice it. I'm just sorry you had that reaction to the remicade...that's frightening.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/16/2009 2:51 AM (GMT -7)   
Oh, Isergodur. I am so, so sorry. That must have been incredibly frightening.

How long do you have to wait before trying Humira?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/16/2009 4:30 AM (GMT -7)   
ivy6 said...
Oh, Isergodur. I am so, so sorry. That must have been incredibly frightening.

How long do you have to wait before trying Humira?


I am not sure will talk to me doc on Monday. Hopefully really soon my tummy is not good.
Has been really good for 7 weeks but the last week before remi I started getting D and I was just waiting to get the remi to fix it :( And you know how that turned out :P

I will post and let you guys know how Humira is treating me :)
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009
And now they think I have Lupus :S

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 10/16/2009 4:39 AM (GMT -7)   
I start my first remi infusion in few hrs, wish me luck. I will let everyone know how it goes. I am getting nervous and trying not to think about it. Waited 7 years to get here.

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 10/16/2009 5:36 AM (GMT -7)   
I had three remicade infusion before developing a reaction. Not pretty. Some kind of scary skin spots that itched like crazy. Before off without it. I did get the colon cancer to top it off from all the immune suppressants I was on. I live Murphy's law.

Hope the Humira works for you. I ended up on herbs from a chinese Dr. that had me in remission and feeling better than ever until they found the deadly cancer cells. Oh well, life is always interesting.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/16/2009 7:03 AM (GMT -7)   
Trigirl - what triggered the search for the cancer? Routine biopsy or something else?
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/16/2009 9:46 AM (GMT -7)   
Iram said...
I start my first remi infusion in few hrs, wish me luck. I will let everyone know how it goes. I am getting nervous and trying not to think about it. Waited 7 years to get here.

Good luck I was not trying to scare anyone. It just did not work well out for me.
But the nurses and docs are ready if anyting happens so dont worry.
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009
And now they think I have Lupus :S

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~


gigi56
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/16/2009 10:01 AM (GMT -7)   
My daughter has been on remicade for about 6 or 7 years with no complications until yesterday. She said her face turned red shortly after they started the infusion. They had to stop and give her benadryl through the IV. After things calmed down they were able to restart. She has had no symptoms for all these years. Will they come back if she has to stop? I don't like the idea of her being on remicade indefinitely anyway.

Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 10/16/2009 11:12 AM (GMT -7)   
just got back from the remi infusion, so far so good, I think the bendrayl knocked me out, and I fell asleep, and the phrama was late by good one hour in getting meds ready, but otherwise, okay, we will see what happens the next few rounds.

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/16/2009 1:07 PM (GMT -7)   
gigi56 said...
My daughter has been on remicade for about 6 or 7 years with no complications until yesterday. She said her face turned red shortly after they started the infusion. They had to stop and give her benadryl through the IV. After things calmed down they were able to restart. She has had no symptoms for all these years. Will they come back if she has to stop? I don't like the idea of her being on remicade indefinitely anyway.


My uncle is also on remicade due to spondylitis ankylopoetica an he said that there was a women getting infusion at the same time as him and she got bad allergic reactions they stopped while she was getting better gave her some steroids and kept going. No problems after that.
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009
And now they think I have Lupus :S

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~

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