• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Did anybody also develop antibodies to Remicade/Humira? Cimzia may be next.

A

Angelique02

Remicade put me into remission, and about 6 months in I developed severe joint pain and tested positive for antibodies. Switched to Humira, and about 4 months later the exact same joint pain came back, and yup... antibodies again! The frustrating part is that the Humira antibodies were discovered after I got pregnant :( I am excited about being pregnant as it was planned, but now I am on nothing. My doctor is afraid to try Cimzia without pairing it with Imuran to prevent antibody formation again, and obviously I can't be on Imuran while pregnant. Entyvio is also something he's considering, which would be after the baby is born. In the mean time, I'm almost 12 weeks pregnant so if I had to start prednisone I can, and I do think my Crohn's is starting to flare. Argghhh. The good news is, the TNF drugs did work for me.... my body just decided to reject them! Has this happened to anybody else?
 
darster

darster

Well, I was never tested for antibodies, but remicade stopped working after 6 years, then the same with Humira. I am tired of being a walking infection, so I am holding off on cimzia for now. Been on prednisone for over a year now and having a hard time getting down to a lower dose. Less options when you are pregnant though. My crohns was very very quiet during my pregnancy, which was a blessing. Maybe yours will settle?
 
KayleighMeek

KayleighMeek

Hi I am currently on cimzia and 18 weeks pregnant and I'm not taking anything else as I am not able to tolerate aza/imuran. I have been on the cimzia for nearly a year now and whilst I am in no way a perfect picture of health I am much better than being on nothing at all. I had reactions to both remicade and humira both put down to developing antibodies as they both worked for a short amount of time, of course it could still happen with the cimzia but so far so good. The plan at the moment is for me to stop taking cimzia when I reach the third trimester and then use steroids if needed but I'm hoping to avoid that.
 
Sandusker

Sandusker

Location
Minnesota
I was on Humira for about 4.5 until it stopped work...which ended up in a resection surgery. I have been on Cimzia for a year and it seems to be working. I'm allergic to aziopthaprine, so I've only used though medications
 
Mandalee

Mandalee

I was on Remicade in 2006 and felt invinsible for about 18 months, working out, got married then it was like I hit a wall and it suddenly stopped working and I started losing a lot of weight. I started Humira and it was never quite the "wonder drug" I first felt Remicade was but it was better than I had been. Eventually I just grew resistant and had to have my 2nd and 3rd surgeries (April 2012 which failed, leaked, caused abscess went on TPN, then finally had to have another resection in July 2012) After last surgery they tried a trial infusion of Remicade in the hospital which seemed to go well but the next month, I had one at the infusion center that caused an allergic reaction. I turned bright red, hot, labored breathing and started to pass out when the nurse came running in. That night I had the most severe joint pain of my life! so no more Remicade for me... I never tried the Humira a second time since they figured I had probably already developed antibodies. I am now on Cimzia (after being on nothing for 3 years because of recurrent C.diff bacterial infections acquired in the hospital. So far I am on second double-dose of Cimzia and not feeling any better... if not worse :(

I really want this medicine to work!!!!!
 
SupportiveMom

SupportiveMom

My kid developed antibodies to Remicade pretty quickly, less than 6 months. Because of this all of her other biologic treatments have been in combo with other meds. She did methotrexate with Humira in hopes to not develop antibodies, and then Humira & Imuran. Humira just never did anything for her so we switched it to Simponi & now she does that with combination of Imuran. Don't know if she ever built up antibodies to Humira, but she never had the allergic reaction like Remicade so didn't pay for the extra test since it never helped her further. I think the only meds I can't speak from experience is Cimzia & Envtyvio but I read positive things . I hope they can work for you.
 
L

Lizzzil

I also developed antibodies to both Remicade and Humira. I was on Remicade for some years before I hideous joint pain and quick clearing of the drug developed. Humira - it never worked as well for me and I developed antibodies within 5-6 months. The joint pain and general lethargy felt just like when I had Remicade antibodies. I just learned today about the Humira antibodies so I am not sure what is next. I also take 250 mg of Imuran, which was to offset antibody formation (obviously did not work). My symptoms were also tremendous joint pain - I have arthritis but nothing as bad as this (it felt like I was dipped in concrete per joint stiffness and pain). Personally, I found the feeling of the antibodies quite unique - or rather, I felt very different than other forms of "bad." I recently read that some doctors consider Imuran safe for pregnancies - you might want to explore that possibility with your doctor. Good luck - I hope the disease quiets for you at least during your pregnancy.
 
L

Lisat

Angelique02...
I find your history interesting. I was on remicade for 10 years, and it was a God send. I developed other complications and was far from perfect, but I maintained a decent life. This winter I began to bleed horribly and felt poorly. The blood work was not good, antibody test came back with a high positive; I now developed strong antibodies against Remicade:( In my appointment with Dr last week, he told me that Humira and Remicade were both made from rat molecules, so it would likely that I would also have antibodies to Humira, as well, and wants me to try Cimzia. He said Entyvia would be the next resort. I believe there was something that I could go from Cimzia to Entyvia but not the other way around. Also, in the last 6+ month, I stopped taking Imuran, because I felt I was doing pretty well with Remicade and Asacol (now Delzicol). I thought Imuran was unnecessary. Now with my big flare, confirmed with a colonoscopy, he thought I could hold tight with Delzicol and canasa until Cimizia is approved. I couldn't handle those canasa suppositories; they made me sick! My diarrhea has calmed down but I still have the bleeding. In addition, I keep getting a low-grade fever and/or sometimes feel so fatigued that I feel like I can't move. Unsure why??
I'm forcing myself to eat a lot so I don't lose weight and empty carbs and protein seem to be working 'ok'. Yesterday another GI at practice said I should go with 30 mg of pred and taper each week as a stop-gap measure until I get rolling on Cimzia. I REALLY hate to take PRED, but should I? I also wondered why Dr didn't have me go back on Imuran; wouldn't that help in the interim?
I have good insurance, but I'm told the Cimzia rep handles it directly with my insurance. I wish they'd get it done NOW.
I developed bad arthritis about 4-5 years ago, def. caused by Crohn's but the remicade was still working until recently. So, Angelique02, I probably offered more questions than answers...
I can't speak to the pregnancy issues; my only is now 21.
I hope your pregnancy goes well, and the Crohn's calms down for you!
 
G

Gladymar

Does anyone know what happens if I stop taking humira all of the sudden? like for a few days(5-11)? I was soooooo sure i had one more refill but apparently i didn't. I need to reapply for it and it will take 2 weeks or maybe 3. My next shot is in 8 days. I am so nervous
 
L

Lisat

My latest nightmare is that insurance co denied cimzia, saying I must try humira first. Based on My reading and my dr's comments, it seems that if I have antibodies to remicade now, humira will also fail me. If I give humira a shot, I'm prob wasting another 8 weeks while hurting my body as a damn science experiment.
So frustrated--really wanted to give cimzia a try. And this prednisone is not helping, but just driving me crazy...
 
You must log in or register to reply here.
Top