Re-starting Remicade after 8+ years? Or should I go w/ Humira instead??

[Mike_in_IL]

Hey everyone,

This seems like a wonderful forum and I've already learned a lot of new things by just browsing various threads. I feel blessed to have found a site like this and hope I can offer encouragement and advice to others as well. In the meantime, here is my story and my question:

I was diagnosed w/ Crohn's back in Aug of 2000 (20 years old at the time) and went on the usual treatments (Asacol, Prednisone, Azathiorprine, etc.), but the only one that would reduce the inflammation was Prednisone. However, the side effects were not very good for the 11 months I was on it. In Sept of 2001, I received my first round of Remicade treatment and it IMMEDIATELY WORKED WONDERS! Within a few days, my inflammation was nearly gone and I felt like new. Did this two more times (8-week intervals) and never had any problems. The only other medication I was on during this time was 175mg of Azathioprine. After that third one, my GI doctor told me not to come back until I need it again...that was back in Dec of 2001 and I was literally in complete remission for over 8 years up until recently. I started getting sick again with my Crohn's this past May and my symptoms have gradually become worse to the point my body is no longer responding to the Azathioprine anymore and every day is pretty bad.

So here's the question...Can I safely go back on Remicade after all this time or has my body developed antibodies to the treatment? I've been reading about mixed results with this and do NOT want to deal with a severe reaction to it if I don't have to. Or...would it be much wiser (and safer) to try Humira instead? My sister also has Crohn's and the Humira has worked wonders for her over the past year.

Thank you so much in advance as I need to make an informed decision shortly about which medication to proceed with because at this point, I'm desperate to get better.

Mike

 

[ameslouise]

Hi Mike - That is great that you had 8 good years! Woo hoo! Sorry to hear things are going haywire for you again.

It is my understanding that the body can develop anitbodies to Remicade if you don't take it continually. I am suprised that the doctor had you stop taking it when things cleared up - it is supposed to be a maintenance type drug that you just keep taking to keep things in remission.

I won't bore you with my story, but I developed antibodies to Remi after not taking it for 7 years. When I tried to start up on it again, I had a bad reaction in the form of joint pain. I am now on Humira and so far so good.

Talk to your doc about the best course of treatment. You can try the Remi again and if it doesn;t work, switch to something else. Don't be shy about getting a second opinion if you aren't comfortable with what your doc is telling you.

Good luck! - Amy

 

[katiesue1506]

There is a blood test that you can take to test for antibodies to Remicade... I believe its a promethus brand test... you should ask your GI about it (but it is an expensive test).

I was on Remicade for about 3 or 4 infusions and then my GI switched me to Humira. I tried to go back on the Remicade about 2 years later and it worked, but it started failing me after 2 or 3 months. I ended up having to double the dose and go every 5 weeks. Finally I asked my doctor "what's next?" and he said "I don't know" and referred me to a Crohn's specialist. This new doc put me back on Humira (weekly shots) and Aza (250mg) combo therapy and I've been doing decent for almost a year.

In your position, I would ask about a blood test first.

 

[My Butt Hurts]

Yeah, I was going to say what KatieSue said about the test too.
If it turns out that you can't do Remi again, Humira will probably work for you. It worked very well for me but only for a short time. I've now been on Remi for 19 months and I'm doing very well on it.
I hope you can get back to remission again, and it lasts just as long for you.
Welcome to the forum!
MBH

 

[Mike_in_IL]

Thank you for the informed replies so far...

Amy...the reason why my GI doctor didn't keep me on Remicade is because he didn't know he had to back then (late 2001). Otherwise, I would have gladly stayed on it. At that time, it was still a newer drug that was just starting to be used to treat people with moderate to severe cases of Crohn's.

katiesue1506...so you're saying this test can actually determine if I already have antibodies built up against Remicade that would show I would be resistant to the treatment? And if I don't, I'm assuming I would probably be a good candidate to try it again? I read a little about this and I'm surprised my GI doctor didn't bring it up...

And it's interesting how Remicade works for some and not well for others (and same with Humira). So much of this is just trial and error with our bodies.

Anyway, I'm going to talk again with a GI doc today, so we have a lot to discuss. I'll keep everyone posted...

Mike

 

[Hope]

Hello Mike,

I was on Remicade for years (about 6) then got off of it--my own stupidity! I went back on it around 2 years ago and got an allergic reaction during the infusion. After several infusions later, my nurse realized she would allow the meds to drip in me slower. So that helped a great deal. But unfortunately, it was no longer working as it did when I first began it. (I wasnt getting into remission).

I did the test to see if I had built antibodies to it, and I did. That is when i began Humira. Giving yourself the needle is intimidating at first, but you get used to it. I was only on Humira for a short time (but i was too sick and needed surgery instead) and had to have an Ileostomy done.

I hope you find the answers you were looking for. It doesnt hurt to try Remicade a few times to see how it makes you feel. Talk to you doctor about it.

Best of luck and take care!

Hope

 

[katiesue1506]

katiesue1506...so you're saying this test can actually determine if I already have antibodies built up against Remicade that would show I would be resistant to the treatment? And if I don't, I'm assuming I would probably be a good candidate to try it again? I read a little about this and I'm surprised my GI doctor didn't bring it up...

Yep! It's just a blood test and they send it away to Prometheus Labs to determine the level of antibodies. But again... it is REALLY expensive. I think mine was $2000.

Here's a link about it http://phx.corporate-ir.net/phoenix.zhtml?c=130685&p=irol-newsArticle&ID=1426685&highlight=

 

[ameslouise]

If you end up getting the Prometheus test, and its not covered by insurance, you can appeal your insurance for coverage. Prometheus has sample appeal letters you can use. Unf, I found this out too late, but thankfully, the test I got was only $225.

Good luck!

 

[Hope]

I paid $200 for the test. I think its worth it if you really want to make sure.

Best of luck!

 

[katiesue1506]

i just asked how much it was... it was 1200 dollars. but I never paid for mine because it wasn't supposed to be taken when it was and it was canceled off my account.

 

[Mike_in_IL]

I spoke with both my doctor and the insurance company, and it sounds like the Prometheus lab work would be covered 100% under my plan. The Humira and Remicade are also coverable, but it's just a matter of whether or not they would be classified as prescription costs or medical expenses (sounds like the plan works with the patient to get them the most cost effective route, which in my case, would be to have them covered as medical expenses since they are "specialty drugs" that would eat up my Rx cost limit in a hurry!

BTW, I have a meeting set up with my GI doctor tomorrow morning to review all my options and decide which treatment to go with next. If I decide on the Remicade, I will definitely have the blood work done first.

Thanks for the feedback everyone and I'll let you all know what I decide to do!

 

[Mike_in_IL]

Just did the blood work for the Remicade antibodies, so I should have the results in about a week. If everything looks good with it, then my GI doc and I have decided we're going to try Remicade again since it worked so well for me in the past without any reactions. If the blood work isn't favorable, then I'm going to immediately start Humira. Either way, I'll be on something much better that should help out soon.

In the meantime, he is having me take 20mg of Prednisone each day that will hopefully reduce my inflammation until the new medication kicks in. If all goes well, I should be able to completely taper off it within a month or so.

I'll bring this thread back up with a progress report within a few weeks...

 

[Mike_in_IL]

FYI, my bloodwork was negative to any antibodies that could have developed when I first did Remicade 9 years ago. So, after getting literally NO relief from the Prednisone (40mg's a day), I had a Remicade infusion done last Wednesday and I'm happy to report that I'm feeing MUCH better. Like 100x better! And no allergic reactions at all. The Remicade kicked in the very next day and it's only got better since. I'm scheduled for another one next week (after only two weeks), then I'll space out to four weeks, then eventually to every eight weeks provided it keeps working.

So anyway, I hope this thread helps someone in the future who was in a similar situation.

Mike

 

[katiesue1506]

woo hoo! That's awesome!

 

[acg101]

@ Mike - Your story is incredible and I am happy remicade works wonders for you in such a short time without any side effects, even after such a long break between treatments. I was on Remicade for a number of years. It took fairly fast for me, after few treatments it kicked in and it was great for a while in remission. after few years, the Remi effectivness decreased so they upped my dosage to the max 'Black Label' and the frequency went from every 8 weeks to 4 untill it stopped working and I got on Cimzia.
In my case, the side effect of the rapid healing became known after my colon was removed, and the pathalogy showed severe strictures and adhesions that were most likely caused by the rapid remicade healing.

I wish you the best of luck. They should study your response to remicade.

 

[DustyKat]

That is great news Mike. I hope it continues to work for you for many years to come. YAY!!!

Take care,
Dusty

 

[Astra]

great news Mike, relief at last, long may it continue!!!

 

[Hungry]

I just read this and seems to fit here maybe? http://www.eurekalert.org/pub_releases/2010-08/aga-soe080510.php

 

[crohns_mom]

Hello Mike:

Appreciate you sharing your story. And Congrats on the negative blood work. I do have a question in regards to the type of Blood test this was.
I am a mom to a Crohn's survivor! I give ALL Crohn's patients my blessings, for I know the tough roads and lives you all live.
My daughters dr is in the process of determing to get the test done. But I specifically asked about this Prometheus test and he said that was not the test he was wanting her to do. We are doing the "waiting game" to let us know what and when this will take place. As he will have to also conference with all her other dr's to all be on the same page (as you may know - Crohn's patients have MANY dr's for many other ailments/diseases/illnesses that arise). But I am curious to know what test it was you did. And if it was the Prometheus, do you know of any other blood test out there, other than that one that determines antibodies to remicade?
She has been off Remicade for 9 months due to several surgeries and other illnesses/procedures. She is looking to get back on, depending on the outcome of test (soon to take) and what her dr has in store. He claims that the Remi is the best thing for her.
Thank you!!! And continued blessings and well wishes.

 

[Clash]

crohns_mom, is your daughter having the HACA antibodies test? It is a blood test to determine if you have built up antibodies to remicade. I'm sorry if I am misunderstanding your question.

 

[crohns_mom]

I am not exactly sure what the test is called, but I do know it is not Prometheus. Dr said he'd let us know, hopefully by tomorrow. Her appt was this morning. It is a test to determine antibodies to Remicade. This is all I know about the testing.
Thanks for your reply.

 

[Clash]

There are different types of Prometheus tests. Prometheus is the lab, so the Prometheus test most often refers to the IBD or Crohn's Prognostic test. So when members discuss the Prometheus test in that respect they are a referring to this:

The PROMETHEUS® IBD sgi Diagnostic™ test is the next generation IBD diagnostic test and the first and only test that
combines serologic, genetic, and inflammation markers in a proprietary Smart Diagnostic Algorithm to provide added IBD
diagnostic clarity

source

But the HACA antibodies test is also done by Prometheus Labs:

PROMETHEUS™ Serum Infliximab/HACA Measurement

- Serum infliximab measurement is necessary when assessing the presence or absence
of HACA antibodies.

source

 

[crohns_mom]

Well I appreciate you clearing that up for me. I have been trying to get an idea as to whether this was the actual test or not. I did some research to also find out it was a lab. But was getting mixed feedback and info as to whether it was also "the test". When I asked the dr this morning, he didn't clarify it, only to say he didn't want to do this test on her as of yet. Leading me to beleive that maybe it was the test (Prometheus). But that he did want to try another test on her.

 

[Mike_in_IL]

Well I appreciate you clearing that up for me. I have been trying to get an idea as to whether this was the actual test or not. I did some research to also find out it was a lab. But was getting mixed feedback and info as to whether it was also "the test". When I asked the dr this morning, he didn't clarify it, only to say he didn't want to do this test on her as of yet. Leading me to beleive that maybe it was the test (Prometheus). But that he did want to try another test on her.

crohns_mom...wow, I literally have not logged onto this site since July of '11 and only knew about this thread because I got the reply notification sent to me (never changed my site preferences I guess!). But as just mentioned above, the test I had done to check for antibodies was through a Prometheus Lab out in CA. Although I don't remember the exact name of the test that was done as this was well over three years ago.

And I'm not sure what kind of mixed information you're getting, but my GI doctor at the time (I've since switched) had absolutely no problem ordering the test since they are the ones who made me aware of the possible conflict in the first place...you see, I had gone over 9 years at that point from my last Remicade infusion. Better to be safe than sorry I guess and I didn't want to deal with a possible bad reaction.

I hope and pray that your daughter can get what she needs so that she gets better soon. God willing, I've been in complete remission since I started Remicade back up in July of '10 as it truly has been life-saving for me.

Best of luck to you and her,

Mike