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Remicade Immunity... Here we go again Now what?!

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Crohn's Disease
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Posted 7/17/2013 10:14 PM (GMT 0)
It seems like it is time for a new way to deal with this crappy disease... ugh

My daughter is now allergic to Remicade, or built up antibodies to the drug making it useless for her. Best $300 I spent on a blood test surprisingly not covered by insurance or OHIP (We are in Canada). She has had severe reactions to her infusions since March. She always felt so bad scaring the other patients getting infusions because she vomitted, had shortness of breath, etc. glad that will be over.

Now the question.. which drug to take next? Doctor told me over the phone we will be discussing Methotrexate & Azathioprine, benefits & side effects. She knows I like my research so she told em to read up so I can make a completely informed decision for my daughter.

So now the questions... Has anyone else dealt with the allergy to remicade? Anyone just on Metho or Aza ? Pill or injection? Any recommendations?

Side effects are scaring the crap out of me.
Posted 7/17/2013 10:18 PM (GMT 0)
The same thing happened to me. My GI switched me to Humira - I'm doing fine - no side effects and it controls my disease. I'm not telling you what to do - but thought I'd pass on my experience.
Posted 7/17/2013 10:21 PM (GMT 0)
Humira was a no, I asked. Doc is afraid at this point to stay in the same class of drug given her reactions and now the blood work telling her the issue. I was kind of hoping to switch to Humira. At least it was something I recognized and saw commercials on...
Posted 7/18/2013 1:56 AM (GMT 0)
What about Cimzia? It's not quite used that much yet, so I dunno it that would be available for her. I think switching to Humira would be safe, but I guess if her doc is not willing to try, then you have to follow his instructions... How's her Crohn's at the moment? If she is in remission, then maybe just being on AZA or MTX would be ok. At least that's what my BF (we both have CD ;) ) did. He moved from another country to Canada and is not yet covered by the RAMQ (although moving to ON in a week and there he will get OHIP) so he couldn't continue with his Remicade. So far it's been a year on AZA only and he doing fine.

BTW, where in ON are you? We are moving to Ottawa next week and we have to look for a GI there...
Posted 7/18/2013 8:38 PM (GMT 0)
I am not sure why the update in the profile isn't working, but she isn't flaring, but it is not under control. She is still on Prednisone, and is the only way she isn't going again 30 times a day. Cimzia is a biologic, same drug family as Remicade. When you have an allergic reaction you have to leave the class of drug I am told. So that means no Humira, no other biologic drug. She already has an allergy to penicillin and went into anaphaltic shock as a young child, so I wouldn't risk it if this is what her blood work is now saying.

I don't know which one is better/worse - AZA or MTX. Were you on it? How did you do if so?

We are in Toronto. To get a GI in this city you have to 1st get a GP to refer you. You can't just make an appointment with a GI. My understanding is it in no better in Ottawa except the wait time is less there to see a GI for the 1st time. As soon as you get OHIP get a GP!
Posted 7/19/2013 7:47 PM (GMT 0)
The main reason people react to Remicade is that there are mouse antibodies in Remicade. Humira does not have the mouse antibodies. I'd get a second opinion re: your daughter's reaction to Remicade. It seems odd to completely keep her away from that class of drugs, considering how well they work for so many people. Just my two cents.
Posted 7/21/2013 8:16 AM (GMT 0)
I agree that a hypersensitive reaction to Remicade shouldn't necessarily preclude her from other biologics. They are the same class, but they are all made in somewhat different ways. Remicade was the first drug in the class, and although still widely used and effective, the mouse proteins in it cause issues in a lot of patients. Humira and Cimzia are newer versions, made in slightly different ways, and specifically designed to cause fewer reactions while having a similar end effect on the Crohn's. I definitely concur that you should seek a second opinion on this before removing her from biologics altogether. My doctor chose to start me on Cimzia for certain reasons, rather than move me up through Remicade and Humira first. But she also said if I ever develop a reaction to it, or it stops being effective, she would change me to another biologic first before trying anything else.
Posted 7/21/2013 1:12 PM (GMT 0)
I am another that would agree with the previous posters, if she has had an allergic reaction there is no reason why she shouldn't be able to try Humira. In fact, it's quite common here in Australia for a patient to be started on Humira if they react to Infliximab as it's usually the mouse antibodies. I would firstly confirm with your GI exactly what sort of reaction your Daughter had. I had a reaction to Humira. At first they thought it was just an injection site reaction, but the reaction turned quite severe and my GI said that it was actually my body attacking the Humira. Even though it was such a bad, usual reaction I was started on another biologic. When I started to have the same reaction, I was changed from that to Infliximab. When I started to react to infliximab, I was taken off that. It was only after having 3 reactions that I have been told I cannot have any more biologics from this class. But please note this was not an allergic reaction. This was a combination of my immune system rejecting the drugs and the drugs causing lupus.

The good thing for me is that I was actually prescribed the biologics for my arthritis. My crohn's has been in remission since Feb 2012 with weekly injections of methotrexate. I have minimal side effects and tolerate the drug fairly well. I just had a scope last week which confirmed that I am in remission. I have also tried 6mp, which didn't work as well for me as the mtx does. I would definitely recommend mtx. The injections are better as the drug is better absorbed. I don't self inject - I see my Primary care Dr every week and her Nurse does it for me.

All the best for your Daughter.
Posted 7/21/2013 7:53 PM (GMT 0)
Totally agree with vadreamer1. Humira should definitely be an option for your daughter. I had the same problem with building up antibodies to Remicade which gave me breathing problems etc, I then changed to Hurmira about 7 months ago and seem to be doing well.
Posted 7/21/2013 9:51 PM (GMT 0)
My two cents are...

When it comes to crohns, surprisingly people around here use to be waaaayyyyy more informed than the average doctor. O.o

Just the way the things are. So... Get a second opinion.

But answering your question, I would do for imuran rather than mtx.

Good luck.
Posted 7/22/2013 3:28 PM (GMT 0)
Remicade gave me problems minor at first and proceeded to do a number on my memory, numbness lower extremities ect. stopped that GI wanted Humira Insurance didn't so I tried Cimzia. after 3 months nothing, stopped that.

I tried 2 out 3. Ended up with surgery in May, not 100 % but better than first part of year. Not on any drugs currently. Every body is different. Your GI ought to be open to the other biologics my GI was.

T

Better Living Though Chemistry
Posted 7/24/2013 6:21 PM (GMT 0)
Hello.

Something similar happened to me after about two years of using Remicade. While receiving the infusion I began to feel flushed and faint. The nurse overseeing the infusion group noticed this and stopped my Remicade drip and gave me IV Benadryl (I think), which quickly stopped this allergic reaction and got me feeling better. She then gradually increased the rate of Remicade infusion and I was able to complete the procedure. I never did the test to determine if I had developed antibodies to the medicine, but it was a safe bet considering the drug stop being effective.

I do believe I played a role in what happened to me in the sense that there were periods of time when I was irresponsible about getting my scheduled infusion on time. I believe that these delays contributed to my body's development of a resistance to Remicade. If there's any value to my suspicion (and my doctor and nurse think I may be on point with this), I highly recommend that those on Remicade commit to it and stay on schedule.

I hope your daughter gets what she needs as soon as possible to feel better.
Posted 7/25/2013 1:54 AM (GMT 0)
Robert - I had the same exact reaction to Remicade that you did - and I was religious about the timing of the infusions. I believe I just developed an allergy to it. I did not get a test either. The doctor switched me to Humira and that was it.
Posted 7/25/2013 2:02 AM (GMT 0)
I have can maybe help with this- I started Humira 7 years ago and it worked great for me for almost the full 7 years. I began having reactions as well and developed medication induced lupus. it was awful. After this, GI suggested we give Cimzia a try. Also biologic. Lupus once again developed in just a few days post injection. With this, he ruled out trying Remicade bc it is biologic and I will most likely develop the lupus/react with it as well. He has suggested methotrexate for me but I have been very resistant to that advise. He allowed me to stay on Asacol/prednisone while I am gearing up for Methotrexate.

All of that to say, I UNDERSTAND. I think developing resistance to biologics is common and if you tried her on Humira she would react also but I guess its worth a try. My reaction symptoms were misery- unable to walk much less have a normal life. I had to get off biologics!
Posted 7/25/2013 6:25 PM (GMT 0)
My understanding from the blood work is her antibody count was very high against the Remicade. She has allergy issues already, and the last infusion she actually had violent vomiting, shortness of breath, hives from head to toe and this with a double dosage of benedryl. Most infusions have been milder reactions. I think they want to be safe by removing it completely from her system before reintroducing. Her doc said Humira was something to consider for the future if need be. I have already witnessed my daughter go into anaphylatic shock once in my life. I wouldn't want to risk it again.

For now we will try the Imuran based upon what I am reading and all of the input you have helped with. Thank you. I agree with you Dijan, people here are way more informed, even with the best doctors I am finding.

LOVE THIS GROUP!
Posted 7/25/2013 6:53 PM (GMT 0)
SupportiveMom- :) Glad to hear you have a decision and a way forward. My thoughts are w/ you and your family. Keep us tuned in on how she's doing.
Posted 7/27/2013 6:32 PM (GMT 0)
Hi I had a reaction to Remicade on my 2nd infusion my whole body went really hot and chest went tight and I couldn't breathe it was really scary I then tried Humira but kept getting infections while on it. I now take Imuran.
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