Developing remicade antibodies?

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empressreggie

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Hi there, I'm new here and really happy to find a forum to talk about everything that we all face with IBD. I want to know about people on Remi who developed antibodies and would appreciate hearing about it and what medication you switched to.

I have Crohn's and have been on Remicade now for 8 months. I did experience great results with the induction therapy, was symptom free for a bit (on a low-residue, no sugar, low carb diet and taking supplements per my GP who has an alternative/holistic approach) however, I was initially on 6MP and Remicade then went off 6MP as I was getting a lot of hair loss and we attributed it to the 6MP. My hair is much better since I went off so I think that was true. I'm now in a flare, and am awaiting tests to see if I've developed antibodies to the Remi. We'd thought it could be bacterial overgrowth but I'm on antibiotics for that and no change. Is it common that Remicade stops working so quickly? Our next choice would be Humira....

Thanks for your feedback!
 
I had antibodies to the Remicade right away. I went through 3 infusions, but by the third time my reactions were getting worse and worse; anaphylactic shock, rash, severe joint pain, body aches, fever, etc. So the Remicade never even had a chance with me. My body was fighting it the whole entire time and it was terrifying and miserable. My doctor told me that since the drug is made up partially of mouse proteins, that is why some people cannot tolerate the drug.

I just switched to Humira and had my first dosage yesterday. It is 100% human protein so there is less of a chance of reaction like the Remicade. It's too early to tell if it's working, but so far there's no reaction.

I had such high hopes for Remicade too and hoped that it would be my miracle drug, but it's not the end of the road. It's hard when a drug fails you, but I hope the Humira might be better for you. I hope it works for me too. Also, the Humira is just a shot you give yourself, which is a million times better than the infusions.

You might ask your doctor about going on a supplementary drug with the Humira like imuran or 6-mp. These are supposed to help you from developing antibodies. Unfortunately, I can't tolerate those drugs, so the doctor is going to try methotrexate injections, which I will start next week, but it's my understanding that the other two drugs are usually a first choice.

I hope it all works out for you!
 
Good luck to you with the Humira. I hope it works for you and sorry the Remi didn't. I was on 6PM with the Remi but I couldn't tolerate the 6PM. I can ask about Imuran if it turns out I haven't developed the antibodies, also about doing it every 6 weeks. I know it's an issue with Remi about antibodies as it uses a mouse chimera so hopefully Humira will work for me.

Thanks so much for your response.
 
I had to stop remicade too. Everytime I got it, my reactions got worse and worse. My final dose I almost went into hypotensive shock, not a good day...haha. I was strictly on Remicade as I couldn't "metabolize" most other supplementry drugs. My GI says it's pretty common for Remicade to "fail" b/c of antibodies, injection rejections, etc. It's usually because of the protiens the remicade is made from.

They moved me to Humira, which I take 80ml per week (2 needles). Reactions are far less common so you do your needles at home, if you can do it yourself that is. I have to have my mom do it b/c I totally couldn't keep that bloody needle straight and in my leg for the duration of time it takes the meds to be injected :p I am also on methotrexate injections. The two drugs are supposed to "complement" each other and help stop reactions and what not.

I hope everything works out!
 
Ten years ago I started on Remicade and within a week I was pain free and had finally gained three kilos in weight. It was a miracle and I thought I've found the Holy Grail. During my 6th infusion (only minutes after starting the drip) I had an anaphylactic shock - I really tought I'd die. A few weeks later my doctors tried again with some other medication administered before. Still, a few minutes later I had my second anaphylactic shock.

Bottom line is, when Remicade worked it was unbelievable and I felt like I was handed a second chance on a normal life, but when it went wrong I nearly lost my life.

I'd still advise anyone to try it - with an emergency plan in place.

Since then I've been on Humira and Cimzia but have to say that neither work exactly well for me. I also have to say that I've not had the typical Crohn's inflammation for years. My problem is terrible fistulas that have been operated on four times and immediately returned. So, I can't really judge those two meds on their effectiveness regarding inflammation.


I wish you great success with whatever you decide to try.

UsernameForDummies
 
I developed antibodies to Remicade after going to the hospital with pneumonia. They gave me immediately hooked me up to an IV with antibiotics. When I told them that I was not supposed to use antibiotics they told me I didn't know what I was talking about.

Thet was the beginning of the end for Remicade effectiveness. I went downhill after that and was tested about 6 months later. I had developed antibodies to Remicade and it basically quit working.
 
Yes, you could start to infuse Remicade every 6 weeks, instead of 8 - that is, if you havent formed any antibodies.

Also, another reason why you should think about coming off the 6MP, is because there is an increased risk of developing a fatal form of lymphoma when 6 MP is taken in conjunction with Anti TNF medications like Remicade. Even though the risks are small, they are there. Apparently it effected mainly young adult men. Despite this, sometimes we have no choice when we have our backs up against the wall, and can't be as picky as we would like to when it comes to our medications.

http://www.webmd.com/drugs/drug-165...NE; MERCAPTOPURINE&intrtype=DRUG&pagenumber=9
 
Hello Crohnies! I am not sure if I have developed autoantibodies to Remicade, but I am sure something is not right with me. A brief history of my Crohn's disease journey:

  • Diagnosed with Crohn's in February 2001 at age 17 after a 4 year battle. Had surgery to removed 12" of my small intestine, including the terminal ileum, appendix, ileocoecal valve, and the beginning of my colon.
  • Second surgery August 2011 for internal hemorrhoids related to Crohn's.
  • Was on EVERYTHING under the sun, but have been consistently on Remicade every 6-8 weeks for 12+ years.
  • Have been off 6-MP for about 3 years (don't ever remember why at this point). I was CONSTANTLY sick (colds, stomach bugs, flu, etc.) because I was so severely immunosuppressed.
  • Went to every 6 weeks in October 2012 after having been every 8 for 4 years.
  • Developed persistent and urgent diarrhea, without blood.
  • Just had a colonoscopy two weeks ago that showed a healthy GI tract. GI prescribed my Questran because I have no ileocoecal valve and thus, bile erroneously enters my colon, causing diarrhea. Since starting Questran, diarrhea has largely subsided.

Now, that sounds all well and good except for the fact that I feel half dead. I cannot remember being this sore, tired, achey, and depressed over my health in literally over a decade. I also was recently diagnosed with a thoracic aortic aneurysm, and I'm running all over creation trying to figure out why I have this new problem.

I have a lot of lupus-like symptoms - malaise, joint and muscle pain, and a fait malar rash that runs across my cheeks and nose (I am male). I am seeing a rheumatologist soon to see if I have a connective tissue disease or disorder, given the aneurysm in my aorta, but I also know developing autoantibodies to Remicade can happen . . . in fact it was my understanding by the 3 GIs I've had up to this point that it would eventually happen.

I haven't had any anaphylactic shock or injection site irritation. As I said I get these infusions every 6 weeks and having been doing so since 2001. My next infusion is April 3rd, which is . . . next week.

Anyone have any experiences like this? My whole life is on hold because I cannot function like this. When I was diagnosed with Crohn's and my life came to a stop (I was hospitalized for 4 months) it was a little surreal because I was a minor and living at home and in high school. Now, I am a doctoral student and a grad assistant who lives on my own, yet I feel helpless!

So frustrating. :poo:
 
amsclafani said:
Hello Crohnies! I am not sure if I have developed autoantibodies to Remicade, but I am sure something is not right with me. A brief history of my Crohn's disease journey:

  • Diagnosed with Crohn's in February 2001 at age 17 after a 4 year battle. Had surgery to removed 12" of my small intestine, including the terminal ileum, appendix, ileocoecal valve, and the beginning of my colon.
  • Second surgery August 2011 for internal hemorrhoids related to Crohn's.
  • Was on EVERYTHING under the sun, but have been consistently on Remicade every 6-8 weeks for 12+ years.
  • Have been off 6-MP for about 3 years (don't ever remember why at this point). I was CONSTANTLY sick (colds, stomach bugs, flu, etc.) because I was so severely immunosuppressed.
  • Went to every 6 weeks in October 2012 after having been every 8 for 4 years.
  • Developed persistent and urgent diarrhea, without blood.
  • Just had a colonoscopy two weeks ago that showed a healthy GI tract. GI prescribed my Questran because I have no ileocoecal valve and thus, bile erroneously enters my colon, causing diarrhea. Since starting Questran, diarrhea has largely subsided.

Now, that sounds all well and good except for the fact that I feel half dead. I cannot remember being this sore, tired, achey, and depressed over my health in literally over a decade. I also was recently diagnosed with a thoracic aortic aneurysm, and I'm running all over creation trying to figure out why I have this new problem.

I have a lot of lupus-like symptoms - malaise, joint and muscle pain, and a fait malar rash that runs across my cheeks and nose (I am male). I am seeing a rheumatologist soon to see if I have a connective tissue disease or disorder, given the aneurysm in my aorta, but I also know developing autoantibodies to Remicade can happen . . . in fact it was my understanding by the 3 GIs I've had up to this point that it would eventually happen.

I haven't had any anaphylactic shock or injection site irritation. As I said I get these infusions every 6 weeks and having been doing so since 2001. My next infusion is April 3rd, which is . . . next week.

Anyone have any experiences like this? My whole life is on hold because I cannot function like this. When I was diagnosed with Crohn's and my life came to a stop (I was hospitalized for 4 months) it was a little surreal because I was a minor and living at home and in high school. Now, I am a doctoral student and a grad assistant who lives on my own, yet I feel helpless!

So frustrating. :poo:
Click to expand...

I developed lupus-like reaction to Remicade recently. After an appointment with a Rheumatologist, my bloodwork showed a drug induced Lupus. However, my doctor has decided I should stay on the Remicade as long as I can because it seems to be working for my Crohn's. She prescribed my Plaquenil for the joint pain and facial rash (mine is faint too) plus a low dose of Medrol. I'm going for one more infusion on Thursday and if it gets worse...I'm done with it. The further I get from my infusion, the better I feel. I too had extreme fatigue, painful joints, brain fog, chest pains, etc etc. I hope the Rheumatologist helps figure this out for you!
 
Hi Everyone! I've recently developed antibodies to Remicade (my back ground - DX's with Crohns in March 2012- after months of pain and issues thought to be UC, and a week in the Hospital, started remicade in April 2012, and also on Imuran, Sulfazalzine, Lialda.) I've been great with Remicade, it was my miracle drug but I've started getting joint pain pretty severe the 2 weeks before my Remicade treatment. Doc sent me for tests and the Prometheus labs came back that I've developed antibodies to it, but for the most part I've handled remicade really well. I have an appt with a rheumatologist in June.

I have an appt with my Dr tomorrow to discuss next steps because I'm assuming they want to pull me off it, I had an infusion last week. I'm nervous of what he's going to put me on, and if i'll be able to have a baby on it. Because that was the plan for the end of the year... :(
 
I had my levels checked the other week as I seem to be feeling less well on remicade.
My antibodies were <10 and my remicade levels were 2.4 at the time of my next infusion (<2 is supposed to be too low). So it seems I should be feeling better than I am.

The GI did say that they are finding this common and have changed my infusion times from 8weeks to 6weeks to see how it goes. They are now taking blood tests for checking the antibodies and levels before very infusion now (although it has to be sent away for testing so results will be know a couple of weeks later)
 
Hi Rkelly710
I am on the same meds as you. . Ive just had my 10th infusion. . I go every 8 weeks.. I have excruciating migrating joint pain at about 6 weeks post infusion. . Its happened only on the last 2 infusions.. maybe I need to get them 6 weekly. .the pain is killing me. . I know the remicade has done this to me. . Nevrr evrr had joint pain prior to remi... what happened to you.. are you still on remi or a different med now.. I have the same symptoms as you. .. thank you so much .. I need help with advice of what to do :)
 
Hi keenie,
My dr kept me on remicade but I go every 4 weeks now and they also upped my dosage so I'm currently at the maxed amount (so if it stopped working I would have to switch meds). They said the joint pain was directly caused by crohns and the remicade was actually helping it. When they checked my trough levels of remicade before one of my infusions I was at almost zero! I did see the rheumatologist and had a boat load of blood work and I actually have all the parts for lupus (ugh!) but they haven't formed yet so they are keeping an eye on that as well. I'm off the sulfazaline because of trying to get pregnant:). And I'm still on imuran but at a lower dose of only 50mg's (my white blood count got too low). But depite all of these changes I'm feeling great and haven't had any joint pain since I started going every 4 weeks!.
Good luck!
 
Thanks so much for your reply.. im the same as you. . Thats what I need.. my remi amped up earlier. . As soon as I had it last time, even in the infusion chair the pain left my body.. I was amazing for 5 weeks.. I'm so happy you feel great. . Thanks for your response Ive just txted my IBD nurse practitioner xx
 
Hi everyone went to the doctors today.. they're going to give me my last remicade infusion on tbe 27.2.14 .. they've put me in low dosage prednisone to assist with the joint pain till then.. they are then switching me over to Humira. . They said I'm building up antibodies to Remicade but still want to keep me on a biologic. .. that's where I'm up to :)
Hope humira is as good as remicade.. I loved my miracle remicade
 
Well Remicade officially stopped working for me :( got sick again, really fast this time, but got on prednisone quickly so I'm doing okay now, just started to taper from 40 to 30 today. (after 2 weeks on 40)...and I start humira on Monday. Really praying I don't get the moon face from the prednisone or gain a lot of weight... (i've been doing weight watchers since November and I work out all the time and I lost about 17 lbs and then with this flare up i lost the last 8 i wanted to loose for a total of 25!.. I've worked so hard to get healthy) so i'm doing my best to count points with the foods that I can eat now... so its bread and eggs and trying to minimize the need to shove food in my mouth at all times... its pretty tough... Hoping humira works for me!
 
I developed antibodies to Remicade almost immediately and had to switch to Humira, too. But it's been my miracle drug and hopefully it will be for you, too!

Remicade is from mouse protein, whereas Humira is humanized so that's why people tend to build antibodies easier to Remicade. Humira doesn't have that happen as often, and people can even stop and restart it because of that sometimes.
 
theOcean said:
I developed antibodies to Remicade almost immediately and had to switch to Humira, too. But it's been my miracle drug and hopefully it will be for you, too!

Remicade is from mouse protein, whereas Humira is humanized so that's why people tend to build antibodies easier to Remicade. Humira doesn't have that happen as often, and people can even stop and restart it because of that sometimes.
Click to expand...

May I ask? Did you have some reaction to the Remicade?

2
 
ronroush7 said:
May I ask? Did you have some reaction to the Remicade?

2
Click to expand...

I did. Mine was a delayed reaction at first -- about a week or so after my infusions I would start to get hives around my neck and cheeks, and I would get terrible eczema/psoriasis showing up on my face.

Eventually, I would get it within hours of infusion, even with pre-meds. I had an antibody test and I had really high antibodies to it, so I stopped and switched to Humira.
 
I've been having really weird joint/muscle pains all over my body. My doctor thinks I may be getting antibodies to the Remicade, so she ordered the Anser IFX test to measure levels and if there are any antibodies. I pray that I don't have antibodies because Remicade is like a miracle for my disease. My CRP is a little elevated now. Also going to do another fecal calprotectin test.
 
aypues said:
I've been having really weird joint/muscle pains all over my body. My doctor thinks I may be getting antibodies to the Remicade, so she ordered the Anser IFX test to measure levels and if there are any antibodies. I pray that I don't have antibodies because Remicade is like a miracle for my disease. My CRP is a little elevated now. Also going to do another fecal calprotectin test.
Click to expand...
Prayers
 
If you build up antibodies to Remicade, don't worry, just go on to Humira. I did and I'm loving it. No problems at all. Been on Humira now for 2 years.. AMAZING !!! 😄😄
 
I tried Humira before Remicade and it never did anything for me. We tried to double the dose but my insurance denied it so switched to Remicade plus cellcept and been loving it.
 
aypues said:
I've been having really weird joint/muscle pains all over my body. My doctor thinks I may be getting antibodies to the Remicade, so she ordered the Anser IFX test to measure levels and if there are any antibodies. I pray that I don't have antibodies because Remicade is like a miracle for my disease. My CRP is a little elevated now. Also going to do another fecal calprotectin test.
Click to expand...

I had the same problem with Remicade so was only on it for five months. I did get my antibodies tested and the test was OK. My doc thought it was more of a hypersensitivity to the drug. On the last infusion, my throat started to close so that was it.

I had already been on Humira before the Remicide so after Remicade I went on to Simponi, then Cimzia but they didn't work. Finally, i was put on Stelara and have been on it for 7 months and doing well.
 
You should then try Entyvio. It's a new biologic. It's gut specific. I would love to try it, but Humira is working well for me so I'm staying on that at the moment. I did build up antibodies to Remicade that's why I'm on Humira. I am definitely keeping Entyvio up my sleeve in case I build up antibodies to Humira. I am a nurse in the operating rooms and work with lots of gastroenterologists as well and they too are saying how great Entyvio is. Maybe ask your GI about Entyvio
 
I got the Anser IFX results back today and luckily I don't have antibodies, but my drug level is a little low at 3.4. We are going to try double the dose and have it every 6 weeks instead of 8. My fecal calprotectin came in higher than before at 818 :(.

The joint stuff is all still there and ive never had it before like this. My other IBD md friend was wondering if it was related to the high dose iron I had recently, Injectafer. Who knows!!
 
aypues said:
I got the Anser IFX results back today and luckily I don't have antibodies, but my drug level is a little low at 3.4. We are going to try double the dose and have it every 6 weeks instead of 8. My fecal calprotectin came in higher than before at 818 :(.

The joint stuff is all still there and ive never had it before like this. My other IBD md friend was wondering if it was related to the high dose iron I had recently, Injectafer. Who knows!!
Click to expand...
I hope it works with the new arrangement.
 
aypues said:
I tried Humira before Remicade and it never did anything for me. We tried to double the dose but my insurance denied it so switched to Remicade plus cellcept and been loving it.
Click to expand...

This is where I am now. Been on Humira for 5 1/2 years and it has been my miracle drug. But over the last 6 months or so I have slowly gone into a flare and it is not going away. Had the Anser (Prometheus) Humira test and found no anti-bodies, but my level was 2.1. The minimum level is 5.0. For some reason I am no absorbing the medicine as I should. My G.I. wanted to change to weekly injections but my insurance company has denied it. The insurance company said they would cover Remicade, Entyvio, and Cimzia. I will find out tomorrow if I am moving to Remicade.
 
Actually, my G.I. filed an appeal, but today I learned we lost the appeal. Tomorrow I will find out what we will do next. My G.I. is thinking that we would move to either Simponi or Entyvio.
 
Ive been on remicade for 1 year and 5 months. It is not working as well and i have a flare up again. My dr wants me to take the promethus blood test as well. He mentioned he might increase the amount per infusion or change from 8 weeks to 6 week intervals. Any advice/knowlege on the subject would be great. Thanks
 
empressreggie said:
Hi there, I'm new here and really happy to find a forum to talk about everything that we all face with IBD. I want to know about people on Remi who developed antibodies and would appreciate hearing about it and what medication you switched to.

I have Crohn's and have been on Remicade now for 8 months. I did experience great results with the induction therapy, was symptom free for a bit (on a low-residue, no sugar, low carb diet and taking supplements per my GP who has an alternative/holistic approach) however, I was initially on 6MP and Remicade then went off 6MP as I was getting a lot of hair loss and we attributed it to the 6MP. My hair is much better since I went off so I think that was true. I'm now in a flare, and am awaiting tests to see if I've developed antibodies to the Remi. We'd thought it could be bacterial overgrowth but I'm on antibiotics for that and no change. Is it common that Remicade stops working so quickly? Our next choice would be Humira....


Thanks for your feedback!
Click to expand...


Hi,
I was diagnosed after surgery in November, 2016. I started with pentasa, that wasn't enough. I started remicade in May of 2017. Things got better but by no means gone. Last few months I've had severe joint pain that travels to different areas. I'm also experiencing chills. I had blood work today as my Dr thinks I may be developing antibodies to the med.
Is humira the next option Drs usually go for? Is this going to be a hit or miss type disease? I'm not sure the side effects are better than the Crohn's itself
Thanks for reading this.
 
I just had an interesting meeting with a top gastro dr at Methodist in Houston. He said:

If Remicade is failing at 8 or 6 week infusions, they can be increased to infuse every 4 weeks at the same dose.

If Remicade fails, your next choice would depend on your Prometheus test for Remicade antibodies - because Humira is a cousin to Remicade.

Entyvio (vedolizumab) has a better remission rate with ulcerative colitis than Crohns. Stelera would be a better option after Remicade and humira.
 

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