Appointment yesterday

[Chester31]

J is 6 weeks into Humira and things are going downhill. He had pain and vomiting last week and after a visit to our GP his IBD nurse appointment got shifted to yesterday. Inflammatory markers are still high, blood count still low and iron low. He won't take steroids so looks like he's heading back to EEN or 80% EN. Waiting to hear from GI next week to see if he can go to weekly Humira. He does seem to benefit from Humira immediately after he takes it but the effect is short-lived and as he says, it may be placebo effect. He is being referred to see a surgeon which terrifies him (and me) but may be for the best in the long run if his strictures (distal ileum) can be removed. We desperately need to get on top of things as GCSEs start in 3 weeks. Hate this disease!

 

[my little penguin]

Humira takes 3-4 months to become fully effective.
I know DS went down hill when we started it and took a long time to get back to baseline .

 

[Maya142]

Humira took 5 months to work after we moved to weekly shots and added MTX for M. We almost gave up on it - only stuck with it because there are so few options for kids. Around month 5, she began feeling significantly better and just got better and better in the next few months.

There is a Humira levels test in US so you can check and see the level of Humira in his blood and whether he needs it weekly. It also checks for antibodies. I'm not sure if it's available in the UK.

When my daughter was on Humira, that test wasn't available yet so we just moved to weekly shots based on her symptoms.

Good luck! Hope he starts feeling better soon!

 

[Chester31]

Thank you so much for your replies - we won't give up just yet then!! Just hope we get the go ahead for weekly jabs.

 

[SupportiveMom]

8 months and nothing for symptoms, did help for healing some. We held on as there was no alternative for her until 7 months ago.

I would also highly recommend testing his blood for how much of the medicine is in there to determine if its worth increasing or antibody issues.

 

[positivemum]

Sorry to hear it's not working out at the moment. As you know we are in the same exam nightmare!

Is there any way you can convince him of the steroids? I never wanted B on them nor did he - he was adamant but he has just finished the 11 week course today and they make a difference more or less instantly and the side effects have been much more manageable this time. It wouldn't be the course of action anyone wants but if he started in the next few days he will be well for the exams wheres EN may not give relief as quickly.

Similarly, what about infliximab? It appears to be working here.

Hate the condition right along with you

 

[Chester31]

So J was admitted to hospital yesterday after a couple of bouts of vomiting and a temperature over the weekend. He has some kind of small mass in his abdomen which is visible as he's so skinny. He is currently on IV antibiotics and he had an ultrasound scan. We don't have the results of that yet although the radiologist did mention that she could wee some inflammation in the area that seems to be causing him trouble. Weekly Humira has been OK'd but other than that no plan until we see the consultant.

 

[positivemum]

Thinking of you and hoping things are comfortable as possible.

 

[Maya142]

Hope he feels better SOON! Weekly Humira made a huge difference to my daughter, hopefully it will be the same for your son.