So many great stories my 12 year old recently got diagnosed, he couldn't take azathiorprine and I now need to go back to the doctors for another option I really want them to put him on remacide but don't know how to bring it up with his gastro doc as they want to keep trying azathiorprine even though he cant tolerate it! We are in the UK so wanted to find out if anyone had any issues getting remacide?
How to move on to remicade in the UK?
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tagging positivemum I believe her son recently started remicade and she is in the UK. I'm not that familiar with the healthcare system. I know some insurance companies require you to "fail" other meds before approving remicade. Basically a bottom up approach where you start with the lower medication and move up the ladder with sulfazines (which many GI's just skip over), immunomodulators the biologics.
What are the symptoms of his intolerance? Are his liver levels high? For my son we were able to decrease aza dosage nearly all the way down and add allipurinol with success, we also gave it to him in the evening so that he slept through any nausea
What are the symptoms of his intolerance? Are his liver levels high? For my son we were able to decrease aza dosage nearly all the way down and add allipurinol with success, we also gave it to him in the evening so that he slept through any nausea
Hi, we are also in the UK. My son was diagnosed 2 years ago aged 14. He was initially started on EEN and Pentasa which helped for a few months. As he continued to have symptoms he was put on Azathioprine which he had to stop after a few weeks due to low lymphocyte count. He then tried 6MP but had same issues as with Aza. In March this year, as he still wasn't in remission, he was given the choice of Infliximab (Remicade) or Humira. He chose Humira as it means fewer hospital visits. Still not in remission so Methotrexate recently added. I think this 'bottom up' approach is quite typical for the UK unless symptoms at diagnosis are really severe.
The NICE guidelines state that biologics should be considered for 'Severe, active Crohn's disease in people aged 6-17 years whose disease has not responded to conventional therapy (including corticosteroids, immunomodulators and primary nutrition therapy), or who are intolerant of or have contraindications to these treatments.'
Good luck!
The NICE guidelines state that biologics should be considered for 'Severe, active Crohn's disease in people aged 6-17 years whose disease has not responded to conventional therapy (including corticosteroids, immunomodulators and primary nutrition therapy), or who are intolerant of or have contraindications to these treatments.'
Good luck!
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You should discuss this with your GI consultant and/or GI nurse. If aza is causing problems then you could try the other immune suppressant - 6MP. I was on aza about 12 months ago and while my bloods were always fine, it gave me the most ridiculously vivid dreams. It got to the point that I actually felt like I had been awake while I was sleeping. Had enough of it so I have now switched to 6MP and I am sleeping much better.
You should also discuss Inflixmab with your GI. If your son is still having symptoms when he is on the immune suppressants then its something you could consider. I recently started inflixmab and I have now had 2 infusions. When I started it I was hospital and with 24 hours of my first infusion it stopped the bleeding and in about 72 hours I was back to normal stools.
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Hi Nadine35
Chester31 has summed it up well. For us also in UK we did EN, steroids and then azathioprine for 2 years til white blood count too low. So off everything back onto EN for months then at scopes in Feb damage bad enough that remicade (infliximab) offered immediately as well as steroids again. Seems to be working apart from GCSE stress has hammered his system and as he is trying to stabilise from that he now has tonsillitis and is attempting antibiotics - always a nightmare for him. He is 16.
State your case and fight for what you know your child needs as you are his advocate and know him best. Good luck - let us know how it goes!
Chester31 has summed it up well. For us also in UK we did EN, steroids and then azathioprine for 2 years til white blood count too low. So off everything back onto EN for months then at scopes in Feb damage bad enough that remicade (infliximab) offered immediately as well as steroids again. Seems to be working apart from GCSE stress has hammered his system and as he is trying to stabilise from that he now has tonsillitis and is attempting antibiotics - always a nightmare for him. He is 16.
State your case and fight for what you know your child needs as you are his advocate and know him best. Good luck - let us know how it goes!
Lots of good advice already. I couldn't tolerate Aza or 6mp but for most they do like to try those first. I tried methotrexate next and it's worked quite well for me with no side effects at all. But we added infliximab too and then switched to humira. It was always the plan for me, at that point, to be on a biologic plus an immunomodulator and it is useful to at least have combination therapy for the first six months on a biologic to prevent formation of antibodies - so from that point of view you may want to be open to your son trying 6mp or methotrexate.
I would just ask, very straightforwardly, "What about infliximab or humira?" and see what the doc says.
What have your son's scopes and imaging shown so far? Have steroids or enteral nutrition been able to get him into remission?
Good luck!
I would just ask, very straightforwardly, "What about infliximab or humira?" and see what the doc says.
What have your son's scopes and imaging shown so far? Have steroids or enteral nutrition been able to get him into remission?
Good luck!
Thank you for the advice! We have 2 options start infliximab or wait 3 months for surgery - his tests show 10cms of damage in terminal ileum so its very localised - mainly pain and vomiting are his symptoms but the wait for surgery is so long I have to try infliximab even though the list of side effects keep me up at night. Steroids got him into remission last year but not this time- EN made him vomit a lot which was a shame I've also tried to do the scd diet but he finds it too hard. He hates being the only one who is sick and tired all the time so I should get a call from the GI doc tomorrow about whether we can start infusions then the real battle of it working starts.
We so need light at the end of the tunnel ��
We so need light at the end of the tunnel ��
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Good luck
Ds loved remicade
It was the first drug he tried that actually worked
Ds loved remicade
It was the first drug he tried that actually worked
Your son sounds much like mine. He has been discharged from hospital today after his second major flare in the last 3 months. His symptoms are also pain and vomiting and he has a 20cm stretch of thickening/inflammation in his small bowel. Humira doesn't seem to be helping him even with the addition of mtx so today we met with the surgeon. The plan for whims surgery mid-September so we have to try to keep him well until then!
Good luck with the infliximab x
Good luck with the infliximab x
Has your son tried enteral nutrition? Think the plan is for my son to stay on that now until surgery as anything solid gets stuck and causes pain and vomiting.
What did the docs say about him vomiting blood?
Is your son able to manage a normal diet or get sufficient calories from food at the moment?
Glad to hear he's feeling better and managed a whole day at school. Hope infliximab does the job for him.
Is your son able to manage a normal diet or get sufficient calories from food at the moment?
Glad to hear he's feeling better and managed a whole day at school. Hope infliximab does the job for him.
