Rash on chin Infliximab reaction?

[Stephyjane]

Hello all,
Well I'm here again looking for all your pearls of wisdom and advice.
Ella has had her 3 loading doses of Infliximab again since coming off it last year due to side effects. We are nearly 4 weeks after her last dose, so halfway until maintenance at 8 week intervals. Ella is still having lots of joint pains and constant clicking painful joints which have been waking her in the night if it happens.
Our newest 'thing' is a red rash that has come up on Ella's chin, first it looked like a few red dots but has very slowly spead so she has 3 red very dry patches. I thought possibly excema, but it's not itchy. Today a little patch has appeared underneath her nose. I've been putting Dermol 500 on it which lessens the redness for a short time but then it's back. I think it may another side effect from the Infliximab. I've put off calling the drs as it just seems its one thing after another.
We have a Rheumatoid appt on Friday so hopefully he'll have an answer.
Also Ella is currently on 30mg lansoprazole a day but is suffering what sounds like heartburn at night also. ( we have very bad nights at the moment)
I'm wondering if I split the dose so she has half in the morning and the other half before bed whether that will help.
We do try to just get on with things but I find the niggly bits so frustrating. I'm hoping for things to be a little calmer before school starts back.
Ella's medication at the moment is 75mg azathioprine daily
30mg lansoprazole daily
Infliximab infusion loading doses completed

Ella had her last bloods drawn just before her last Infliximab on July 18th, her wbc was 3.4 and neutrophil 1.25. I thought they seem a little on the low side.
Anyhow I hope all of you are keeping as well as can be and I really appreciate any advice. Steph

 

[my little penguin]

DS had skin issues with remicade
Dermo said it didn't create the issues but brought them to the surface.
Rash on his face , scalp, peeling fingers .
It started out like rosecea - rash around mouth , chin nose and eyes.
Stopped remicade no more rashes but he had a true reaction to remicade involving breathing issues and throat / tongue issues.
We did not stop for the skin stuff

 

[Stephyjane]

Thanks my little penguin,
Do you think the skin reaction was a first sign that your son was reacting to the infusion and the rest followed. Or that the reaction that caused him to stop the infusion was totally separate. I see that your son is on Humira now, is that working well for him? That hasn't been mentioned as an option for Ella, whether they don't have it approved for paediactric use in the UK I don't know. I know an adult that is on it, which it has been brilliant for in treating RA.
Thank you for your response.

 

[Sascot]

Hi, sorry to hear about the extra side effect. Hope it settles down on it's own. I'm not sure about Humira in the UK either - we are just starting meds, but so far our GI has only mentioned Aza or 6mp, then methotrexate, then Remicade. I know they started a paediatric trial of LDN in Dundee, but it probably isn't anywhere near finished.

 

[polly13]

Lucy has skin issue like you describe a lot, for us it has become a sign that the crohns is possibly flaring. My GI nurse had a name for it but I can't remember it, my GI thinks I'm completely off the mark with my suggestion that its the first sign of a flare.

 

[Stephyjane]

Thanks Sascot and Polly, I do find it quite difficult talking to the consultant about Ella's treatment. I seem to get told what she is to have rather than a discussion. Infliximab has been our only option, as well as the Aza she has been on and off for a year. With all the add on side effects we seem to never get to a solid ground.
I shall keep an eye on her skin and see what happens.
When Ella was dressing this morning I noticed about 12 or so little bruises all over her legs. Ella isn't a rough & tumble kind of kid, though she has been on her bike lots this week. Do any of the meds affect bruising?
Thanks again

 

[my little penguin]

http://m.netdoctor.co.uk/seniors-health/medicines/humira.html


Approved for kids in Europe with crohn's
Link to a uk site - says 6-17 year olds so....