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Had to quit the Remicade

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Crohn's Disease
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Posted 10/15/2009 10:03 PM (GMT 0)
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.
Posted 10/15/2009 11:08 PM (GMT 0)
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.

 

Posted 10/15/2009 11:38 PM (GMT 0)
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.
Posted 10/15/2009 11:52 PM (GMT 0)
I had an allergic reaction to remicade too. It's scary!
Posted 10/16/2009 5:06 AM (GMT 0)
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
Posted 10/16/2009 5:15 AM (GMT 0)
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.
Posted 10/16/2009 9:51 AM (GMT 0)
Oh, Isergodur. I am so, so sorry. That must have been incredibly frightening.

How long do you have to wait before trying Humira?
Posted 10/16/2009 11:30 AM (GMT 0)

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 :)
Posted 10/16/2009 11:39 AM (GMT 0)
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.
Posted 10/16/2009 12:36 PM (GMT 0)
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.
Posted 10/16/2009 2:03 PM (GMT 0)
Trigirl - what triggered the search for the cancer? Routine biopsy or something else?
Posted 10/16/2009 4:46 PM (GMT 0)

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.
Posted 10/16/2009 5:01 PM (GMT 0)
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.
Posted 10/16/2009 6:12 PM (GMT 0)
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.
Posted 10/16/2009 8:07 PM (GMT 0)

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.
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