Infliximab Antibodies: Hi everyone I hope that... - Behçet's UK

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Infliximab Antibodies

AK13 profile image
AK13
5 Replies

Hi everyone I hope that you are all well. As I imagine most of us do I take a cocktail of medication up until 3 weeks ago this included infliximab infusions every 6 weeks.

Infliximab was my wonder drug and really gave me some quality of life back but now unfortunately (slightly concerned that this has only been raised since covid) I have developed antibodies. I had noticed that the infusions weren’t working as well as they used to and was literally desperate for the next one. But what next, they say possibly Humira but apparently you can develop antibodies to that? I would greatly appreciate anybody’s thoughts or experiences

Stay safe

Thanks x

@humira @infliximab

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AK13
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5 Replies
swanseakev profile image
swanseakev

Hi AK13,

I started off on weekly Humira injections in conjunction with my weekly Methotrexate injections

I have to say i terrible reaction to the Humira, my Flare and blood works went off the chart i was very ill...dont know if it was the Humira itself or the fact i was injecting Methotrexate aswell

Like yourself im on the Infliximab infusions now every 6 weeks and theyve been a God send.....ive had a couple of Antibody tests as it seemed to dip in its effectiveness, and going back on Humira was mentioned to give my immune system a break which i refused , but ive stuck with the Infliximab and it still seems like its doing a great job with the Methotrexate , Colchicine

I know we all react differently to Meds , but Humira was definitely a no no for me

Stay safe , stay well👍👍

Kev

Ang4upmich profile image
Ang4upmich

I tried Humera and it did Not work at all, so I get the IV e ery 6 weeks.

I did not know you can get antibodies? So, it is from the meds or a body intolerance

AK13 profile image
AK13 in reply toAng4upmich

Your immune system recognises the infliximab as a foreign body so starts to fight it creating antibodies which then makes it less or ineffective :-(

Painful247 profile image
Painful247 in reply toAng4upmich

Hi a couple of years back they put me on Humira. After a few hours of my second injection I had a terrible pain in my back which was so bad I could only stand up behind a chair for support, I couldn't sit or lay down due to the pain. I went to the Hospital to see my specialist nurse and she spoke to the Consultant and I was given a MRI scan. The scan showed that I had an hemangioma attached to my spine that the Humira had caused to erupt. I have never felt pain like it before or since the blood seeped into my nerve ending and I couldn't touch my side or stomach for weeks. Thank God they then put me on 6 weekly infusions of Remicade which has been amazing, but I must admit it only lasts me four and a half weeks before the pains start to raise their evil heads again. About 3 weeks ago both my hands was so red and swollen that they looked like boxing gloves the consultant raised my intake of methotrexate.

alleejowine profile image
alleejowine

I am what they call "refractory" which means I grow antibodies quickly to meds as well. Humira lasted me 2 months tops. Its so very frustrating.

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