Antibodies to remicade

I was at the cleveland clinic last week for the antibody test. I asked the same question. He assured me we have several options to explore after remicade. I didn't ask for a list so I can't give you specifics but he was very adamant.

He also mentioned that if my blood tests show low levels that it's more likely that my colon isn't absorbing the remicade not antibodies. he said its common for those with severe colitis. If that happens best protocol is to double up both dose and frequency.

My tests came back fine and hope yours does too,

Thanks for the quick reply
I am already on a double dose but I am still doing it at 8 weeks
There is basically entyvio ( not anti tnf) and than humira and simponi
There are others that are not approved for uc but people can use anyways.
It was my impression that after one anti tnf fails the others tend to not work as well.
I am still feeling ok compared to how I was before I started remicade
Do you think upping my imuran is a good idea as that will help prevent antibodies?

I agree with ipoop! I have a couple of friends that stopped responding to remicade after 6 months - 2 years and switched to humira and it has worked for years.

As far as imuran, you are one step ahead of me as I'm weaning off prednisone so can't add that until I'm done. So I may be asking you for advice soon.

thanks again for all of your replies it means a lot to me, cuz for some reason im feeling really super anxious (havent felt this anxious since steroids)
i know im thinking to far ahead in advance but the reason im so scared of surgery (aside for being hospitalized again)
it is that there is really high infertility stats assosiated with surgery and I really really really want to be a mom, I am not trying right now to have kids but I would like to have several children if possible.
honestly after I have children I think I will go for elective surgery to rid myself of UC and the junk that comes along with it.

remicade is my first biologic after failing mesalamines and IV steroids were not helping (I was diagnosed in april after a long time of symptoms and procrastinating to see a doctor)

I was given antibiotics (for an unrelated condition) while on Remicade and developed antibodies to it. This was after almost 2 years of success with it.

I'm in the same situation. I'm in the hospital right now, and I'll hopefully get the results back next week to see if I've developed anti-bodies to the Remicade. I haven't had my dose doubled yet, though, so hopefully it's just an issue with the level of the drug in my system.

Either way there are other biologics available, so it's no the end of the road. I am trying not to be too anxious about it since I know that won't help. I hope things work out for both of us.

Dikid - i see you are located in the midwest, in which case I would recommend Dr. Remzi at the Cleveland Clinic given the relative proximity. My surgeon is Dr. Ron Landmann at the Mayo Clinic in FL. He's done almost 1,000 jpouch procedures and came highly recommended through jpouchers I emailed with through jpouch.org.

Infertility and jpouch surgery is something I'm not familiar about. I did some digging and found out the following:

1.) Threefold increased risk of infertility: a meta‐analysis of infertility after ileal pouch anal anastomosis in ulcerative colitis
www.ncbi.nlm.nih.gov/pmc/articles/PMC1860095/

2.) Infertility - what's the facts?
www.healingwell.com/community/default.aspx?f=33&m=2975629

3.) CCFA: FERTILITY AND PREGNANCY IN THE PATIENT WITH INFLAMMATORY BOWEL DISEASE
Women with UC have fertility rates similar to the general population prior to surgery. A study by Olsen and colleagues 12 of 290 women with UC versus 661 non-IBD controls found that women with UC had fecundability ratios (FR) (the ability to conceive per menstrual cycle with unprotected intercourse) equal to the general population (FR = 1.01). However, after surgery for an ileal pouch anal anastomosis (IPAA), FR dropped to 0.20 (p,0.001) (see fig 1). This finding was confirmed by Johnson and colleagues who showed a 38.6% infertility rate in UC patients after IPAA versus 13.3% in UC patients managed non-operatively (p,0.001). The reduction in fertility may be due to surgery in the pelvis and the consequent adhesions and damage to the
reproductive organs. Patients who undergo a proctocolectomy with ileostomy also experience a reduction in fertility, as do patients with familial adenomatous polyposis who undergo IPAA.

www.ccfa.org/assets/pdfs/Womenandibdgutpregnancy.pdf

I remember when I was diagnosed, I asked about surgery.. my UC was mild at the time. My GI was very against it because of the risk of infertility. I've never wanted children but people always think you will change your mind. I haven't changed my mind on the issue. That risk definitely something to consider if you want children. I can see both sides. Being a mom with UC would be very difficult but having surgery and risking losing the ability to have children is also difficult. I think if I wanted children, i would have hung on to my colon until after having them. Having surgery is harder when you have kids though so that is another consideration. It would be great if the surgeon could say 100% you will be able to conceive after surgery but I don't buy it.

what ended up happening? did they send you home or admit you?

Does this mean no more remicade? Also I'm confused as to why they gave you Ibuprofen and toradol as they are both NSAIDs which can worsen UC symptoms.

Update: got my results this morning. My levels were normal but in the higher range ( aside from Ana which was very high but the doctor said it's likely because I have colitis and not because of remicade antibodies)
The doctor said the joint pain was most likely from tapering steroids and we will monitor it but since it's improving he is not worried.

Thanks for all your reassurances. And boy do I feel stupid for overreacting. I guess they say hindsight is 20/20