Annie Update - moving to Embrel

anniesmum

I havent been on for ages. Hope you and yours ok, Thought I would update you on Annie. She has been okish since the joint injections but she has still been struggling with her overall well being which is due to her arthritis being Systemic.
More recently she has also been suffering sporadic pain and pain in her knees- she is still on 5mg pred aswell as mtx so the decision to move onto Etanercept(embrel) has been made.
I am hoping that this new combo will do the trick - I would love her to be able to come off the oral steroids which she has now been on since february.
If anyone has any top tips on Embrel I would be really pleased to hear them - scared myself a few nights ago reading about the long term effects on the internet but realise we have no choice as if there is a chance Annie can feel better than she is, we have to take it.
Reading other posts it seems this weather is doing out little ones no favours.
Take care all
Lucy

loopslike

I will consult with my professor about your child problem and give you a response as early as possible.Don't worry about that.

lare73

hi lucy

sorry to hear annie hasnt been great, hope the new treatment works for her.

been very busy this end.

hope to see you in december at the workshop

take care

clare x

illihor

This is the combination that Kayleigh is on. We have dropped oral steroids and now get by with a reduced dose of ibuprofen daily (still needs it ) but the mtx and Enbrel is doing the trick. It's not often she complains of pain now and when she does it seems to be short lived and a rest, hot/cold treatment, soak in a bath (well play at her age lol) seems to be helping.

This weather def isn't helping her any though and i've been making sure the heating comes on and it's nice and warm for her when she wakes in the morning. It took about 6 weeks for me to start seeing the effects (not helped by having to miss a week 4th week in due to being on anti-b's)

She seems a lot happier in herself but is HATING the injections I dread every friday morning (as she has both mtx and enbrel on the same day as enbrel is just one injection per week for her due to age and weight or something like that lol) this week she's also got bloods which i hate just as much she's really getting a fear of it all

Michelle xxx

anniesmum

Hi Michelle,

Well what good news to hear - I am really pleased the combo is working for Kayleigh. I hope Annie gets the same results. Sounds like she is the same about her injections as Annie - we have moved the mtx to saturday mornings in the hope that she'll be more able to cope in the mornings compared with an evening?? We did the first injection of Embrel last night which was a little traumatic as she was so upset. I am trying not to dread Saturday which will be double injection day. It is really tough though, isn't it.

I am feeling low today as poor Annie has been off school as her Systemic temperatures and rash have been coming back, aswell as aches and pains - having spoken to her consultant we have upped her oral steroids in the hope that will stop them. The little trooper has determindly gone back to school today, as no temperature this am. It breaks my heart that she looks so poorly and I am leaving her there but she is such a fighter and really wants to be at school.
Take care,
Lucy