Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group NO more Remicade for Amy :(

Hello!

So as it turns out, I am off the Remicade. I have been having small reactions the last couple times I have been in. The last time my Doc doubled my Benadryl to 50mgs, it seemed to work, but I felt like HELL for the rest of the day and into the night. So I went for my infusion today, and was waiting in line to get my blood work done and I had a reaction again. I became completely flushed, HOT very hot, like my whole body was on fire and I had trouble breathing. I tried to sit it out & I turned off the Remi - didn't want to be hasty and go running back to the infusion room freaking my nurse out. Kat will appreciate that as we have the same nurse! After about 5 minutes I went back. My mom was waiting for me and remarked on how red my face was, I told her I wasn't feeling well, I went and slumped in the chair, I just sat there and waited for my Doc to come. He came and told me I wasn't getting anymore today. He told me that in some people because Remicade is made up of something from mice (Not very scientific - sorry) our bodies can develope anti-bodies and it starts fighting the drug, which he believe is the case here. He said it would just get worse everytime. He also said, in the future I could come back to this drug, so the door is not closed. He kept looking at me funny, I think he was waiting for me to cry. I never cried but I felt like hell - physically and still am not feeling right. It is sad news for me because the Remicade (besides the last 2 actual infusions - I was great after them though) worked for me and gave me relief. He wants me to try Humira next, so I am currently setting that up. I am glad there are options, I was looking forward to getting some sleep tonight, but I guess that won't be happening. I don't sleep well when my Remicade wears off......hoping the Humira thing happens soon.

Anyway, my nurse was very upset because we have bonded over the last year and a half and I really enjoy going to see her. I promised her I would come down and have dinner with her soon, as our visit was cut short today. Kat maybe you want to join us?

That is all.....just dealing with the disapointment and nausea right now.

Cheers,

Amy:)

Amy,

Wow sounds like you had a rough time of it, like you I am glad you have other options to fall back on and can stay with some type of treatment.

Brent

Hi Amy,

Sorry to hear that, always disappointing when something stops working that controls the AS. Hopefully you can get the Humira quickly and it works as well.

Tim

Dang, sorry to hear that Amy. Since I have been singing the praises of Remicade recently following my first two infusions, I know how disappointed you must feel. That said, I think you are most definitely making the right decision, and even though the stuff has been a godsend to me so far, I would (will) do the exact same thing if this happened to me. I really hope the Humira works for you.

As far as meeting up with that nurse, I don't want to speak for Kat of course, but maybe you could go to the hospital on a day when Kat is getting her infusion and then the three of you could head to dinner right after that, allowing Kat to kill two birds with one stone. I think the only reason I thought of this is because, as I'm sure everyone here can relate to, I always try to think of the most efficient way to do any task so that I don't have to expend any extra energy or risk aggravating my AS. My mind is constantly flipping through options whenever I have to do any task, no matter how large or small, trying to determine if I can combine two or more tasks in order to reduce my overall workload. Not laziness, mind you--just efficiency at work in an attempt to deal with the cold, hard facts of AS!

Good luck as you move forward Amy.

Brad

Yeah, I think it will be OK. I am disapointed, but my doc said it is not like we can never try it again in the long run. I am sure I will be fine. I am lucky to have good benefits and the option of using another drug. He was very empathetic and sensitive, today, and since I was disapointed I appreciated it very much. He was only positive today when discussing the Humira with me, mind you I was slightly to moderately out of it! lol I am being postive, no point in getting all upset about it, since there is nothing I can do.

On a happier note, I booked my trip to Hungary and Austria this summer! Two weeks of school left.....things are looking up!

I will let you know how the Humira worked!

Amy:)

Hi Amy,

I tried Remicade for 8 months and failed. I think it's made from mouse urine. Don't think about it. Then I went to Humira (I use the pen), and it works fairly well. At least I can function and am not on the couch, in enormous pain, everyday. Thank God there are choices. Altho I have tried to stop the nsaids, I find the combination works the best for me. And so, I take 2 Voltaren a day.

I wish you the best of luck. By the way, it took 4 full months for the Humira to begin working, so don't get discouraged if it takes a while.

Take care,
Jessie

Nope - something to do with mice....again, not a very scientific answer.

Amy:)

Awww Amy, that is very disappointing for sure. I'm relieved your reactions were not worse and glad they're keeping you safe by switching you off this and on to Humira. Yes - thank goodness for options!

I really had to smile hearing how much you've bonded with your nurse! I have such great nurses too so can really appreciate how you are gonna miss their company!

Wishing you the best of luck with Humira, Amy! Please let us know how it works for you.
hugs,
mig


Oh and for those curious, as I understand it, Remicade is made of monoclonal and monospecific human-mouse (murine!) hybrid cells which are subcultured and then cloned in vitro (a dish or artificial environment) and designed to target/inhibit/bind with tumor necrosis factor-alpha (TNFa is one bit of our very complex immune systems, that is directly involved in the inflammatory process). This medication is a chimeric, combining the antigen-binding part from (immunized) mice antibodies with human antibodies but even still, our immune systems see the mouse part as a foreign invader and may learn to mount a response... effectively creating the dreaded autoantibodies which fight against the very expensive antibodies..! So, it's exactly as Amy said, something to do with mice!

Thanks Mig, I am trying to be positive here. The other thing my doc said was that we can still use the Remicade if we do not have good results with the Humira but I would have to take a lot more drugs to counter act the allergic reaction. So that is PLAN B.

Options, just glad to have them! Upset, but life is just too short for being crusty about things you cannot control.

Amy:)