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I don't know if they use off label drugs it has never come up so maybe they do.

Thanks for recipes for the majic mouthwash lucy uses a steriod disolved - buednesone (sp?) and it works quite well but once we stop the mouth gets irritated again. I am definately going to ask the IBD nurse about the majic mouthwash next time Im taking to her. Her mouth is actually getting...

Hi there pilgrim - Lucy does her mtx on Friday and humira on Monday and that seems to work pretty well. Good luck with it hope she feels better soon.

Hi Mummy1974, you have really been through the mill since you last posted. My heart goes out to your little man, while different to lucy there are some similarities, particularly in relation to the mouth, I always knew if her mouth was bad her bum was going to follow very quickly - for Lucy...

Hi had indicated he would move her to weekly humira but I'm wondering following conversation with ibd nurse. Something is telling me GI doesn't do 6mp with biologic any more - it's 4 years+since Lucy had that combination. To make matters worse poor little pet is down with tonsillitis:(:(

She was on 6 mp before both on its own and with infliximab and it had no effect, does umuran work the same?

Taking more folic acid and also zofran (anti sickness) she was still vomiting with that but ok on the lower dose

It's a difficult one we had upped the methotrexate but she didn't tolerate it well so we reverted I guess that is on the cards, scope was clear and awaiting the results of the mre.would her mouth affect the calprotectin result?

Hi and welcome, so sorry you had to find us, our daughter Lucy was diagnosed at 2 and is now 8 so a similar age to your little one. Lucy is currently on humira and methotrexate which has worked well for the last three years until very recently, she has also been on other combinations of very...

Very similar situation with Lucy - off methotrexate and she started to have some symptoms again and her calprotectin was elevated added back Methotrexate and while it has some effect she is not fully in remission her calprotectin came down from 1900 to about 800 so it could work.

Hi am so sorry to hear that Jae has so many issues at the moment - your plate analogy is spot on. Lucy's main area of inflamation was her rectum and anus, and it was only biologics that had any impact on her symptoms first infliximab which failed after a few months and then Humira which worked...

Hi have a little update since I posted yesterday, I spoke to GI nurse yesterday who told me that Humira levels were fine and increasing is not indicated. She also suggested that we try putting Lucy on the Cinamon and Benzoate free diet which has had some success in treating oral crohns - anybody...

Just giving a quick update on Lucy. All in all she feels ok, but ....... Fecal Calprotecton - still elevated slightly at 895 down from 1900 in July ........Offical diagnosis of oral crohns at our last GI vist ........Frequent trips to bathroom ........losing weight - had dropped 2KG at our last...

So sorry to hear Jae is feeling unwell, I agree with the others to push for full scope. The rectal area is really slow to heal, Lucy was on humira a couple of months before she saw any significant improvement, so could be that the meds havnt worked yet? Hugs

Thinking of you and grace beyond awful what they are doing to you

Oral crohns confirmed by GI today, lots of mouth ulcers developed over the last couple of weeks, on steroid mouthwash so hopefully will help and we wait to see the dentist who specialises in oral Crohns. Calprotecton 795 down from 1800 in June, she grew 3cm and lost 1.5 kegs, took bloods today...

Thanks Guys - Crohns not in remission - slightly elevated calprotectin but very minor changes on scope and no perianal disease (which was her main problem) . Have completed poo sample last week for repeat calprotectin and small bowel MRE scheduled next month, mouth ulcers were her presenting...

So sorry your daughter is stuggling with her symptoms in school. Hope fully your second opinion will give you more answers. When Lucy started school, we started with 2.5 hours initially and gradually built up to full days over a couple of months, I think this really helped her, she also had a...

Hi there, wondering if anybody had a similar experience. About two weeks ago one side of Lucy's upper lip appeared swollen, so initially I though that she had just knocked it or that she had bit it, however roll on two weeks and it is still swollen - I have given her piriton incase it is an...

Lucy takes zofran before and after the mtx tablet - 4 hours before and again the following am and this has really helped with the nausea - she does however tend to be very flu like about 48 hours after taking it for a day or two - she takes 5mg folic acid the day after - moving this to the day...