Remicade Antibodies starting humira

[Leed2713]

After months of feeling that remicade was not working and 3 hospital admissions since mid march we finally found issue. My son 14 has developed antibodies to crohns his bloods have been normal though which baffled me and his faceal calprotectin few months ago too. we were at point that gastro thought it was functional pain. He has to do 6 weeks EN and is drinking it this time fingers crossed doing well with it. They said he will be moving on to Humira. As he developed antibodies to remicade is he at a higher risk of developing it with humira ? also they said it was last option. from reading on here I don't believe it is. We are based in uk. What is next option if he was to develop antibodies ? anyones experiences would be greatly appreciated. thank u in advance. Also he was taken off azathioprine few months ago as he tested negative for mono

 

[my little penguin]

Typically they add mtx to humira to keep antibodies from forming in kids who developed antibodies to previous biologics
Ds had to switch from remicade to humira due to an allergic reaction (no antibodies )
He has been on humira for 5 years now

Other options
Entivyio
Stelera
Simponi
Cimzia

 

[Maya142]

I agree, I would ask about MTX with the Humira to prevent antibodies. My older daughter has been on Humira (for the second time) for four years. No issues at all. I think in the UK the new formulation of the shots has been released, so hopefully the shots won't be too painful.

Hope the EEN goes well and isn't too hard.

 

[pdx]

Sorry to hear about your son's rough spring. I hope that Humira works well for him, and I agree about trying to add methotrexate to prevent antibody formation.

 

[Leed2713]

Typically they add mtx to humira to keep antibodies from forming in kids who developed antibodies to previous biologics
Ds had to switch from remicade to humira due to an allergic reaction (no antibodies )
He has been on humira for 5 years now

Other options
Entivyio
Stelera
Simponi
Cimzia

How has it been for him ? I also thought there were other medications unless maybe they aren't approved in the uk. Thank you so much for getting back to me

 

[Leed2713]

I agree, I would ask about MTX with the Humira to prevent antibodies. My older daughter has been on Humira (for the second time) for four years. No issues at all. I think in the UK the new formulation of the shots has been released, so hopefully the shots won't be too painful.

Hope the EEN goes well and isn't too hard.

Aww that would be amazing he has a really bad needle phobia. I think that may be why gastroenterologist decided to stay on azathioprine with the rrmicade instead of it. Though I have red can get a tablet fork if the MTx. He does feel sick for around an hour after drinking the enn and has has few stomach cramps today. But fingers crossed

 

[Leed2713]

Sorry to hear about your son's rough spring. I hope that Humira works well for him, and I agree about trying to add methotrexate to prevent antibody formation.

Hopefully they will agree to add the mxt and this will be the drug that gives him his life back. It's been rough since diagnosis just short of two years ago xo

 

[Maya142]

Not sure if this is available in the UK but it's worth looking into: https://buzzyhelps.com

My older daughter (who is now in her 20s!) still uses Buzzy and thinks it helps. It works by confusing the nerves with vibration and that makes the shot hurt less. Numbing cream might also help a little. We also iced before and after the shot and did it while my daughter was watching TV, so she was distracted.

MTX can be taken in tablet form. But the injection is also TINY - a teeny tiny needle (not like Humira at all) and doesn't hurt.

But plenty of kids do great on oral MTX too, particularly if it's low dose MTX to prevent antibodies.

 

[my little penguin]

Humira has done well for ds for over 5 years

He takes mtx orally (no shot)

The other drugs are approved in the U.K.
At least entivyio and cimiza are since adult members here from the U.K. Are on them

 

[Maya142]

Simponi is approved in the EU definitely for polyarticular JIA and AS. I think it is also approved for UC there. I doubt it is approved for Crohn's (it isn't approved for Crohn's here either), but it may be used off-label.

Not entirely sure about the UK specifically - you may have more luck posting on the adults forum, since there are more members from the UK there.

Stelara is very new - just approved in September here. Not sure if it's approved there yet - I think it might be but you'd have to check if you're curious.

There are definitely options after Humira, so don't panic. But it is a good idea to prevent antibody formation so he can stay on Humira as long as possible.

 

[Leed2713]

Hi Maya142 I must get online and check for buzzy really think that would help. Also thanks for the tip I will post on the adult forum and see what they think about other medications available in uk. I really don't know why said was last choice. maybe last choice biologic they have at my hospital.

My little penguin 5 years wow that is fab. Fingers crossed we have same success. I will check with my gastro nurse about the entivyio and cimzia. Its a relief to know of other options.

Still doing good drinking the module with chocolate krusha. its day 6 so im very proud indeed. He still feels nauseous for an hour after each sitting. we have three per day with 600ml per set. so around 3 hours of the nausea and few sore stomach but a lot better than he has been for months and we had bm yesterday that was mush as opposed to water. so heading right direction fingers crossed

 

[my little penguin]

Can you break you the drinks to 5 -6 times a day
The drinks make a normal person nauseous (high fat high volume )
When Ds did een we aim for 6 times a day (same amount but small volume per time)
Also have him drink it slowly that also helps
Glad things are moving in the right direction

 

[Leed2713]

yeah think we are going to try that. he wanted to get it out of the way. But think doing it less and more often would be far better. thank u again