what would you do if you were me??

lare73

Hiya everyone,

ok i am after some opinions regarding my son tom(14) and hes meds.
As some of you know tom has JIA and has been taken off mtx and puton entarcept. we are still waiting for delivery of the new drug.

so, for past 3 weeks no meds except pain killers and hes been ok, no complaints.

ok, heres my dilemma, we go to turkey in 9 days for one week, do i take the new drug with us? he usually has his injections on a saturday, so may get one in before we go if it turns up.
does it matter if its a few days late or one missed??new drug to us.
never had issues before as never went away as he was unwell.

i am concerned about travelling with a pre filled syrige, keeping it cool, safe but obviuosly i need to do what is best for tom. (he hates needles by the way so would be happy for me not to take it, little monkey!).

also, if i do take it where do i get the paperwork fr om to say we are allowed to take it???GP's??
thanks for reading ..... ready for your thoughts and opinions eeeek!
xx

Poppyg1rl

Hi
I'm on eternacept (enbrel) too, when I first received delivery of the drug I was given a welcome pack explaining all about the drug, when to take it was printed on the box containing the pre filled pens, which site on the body to inject etc, they also include a letter in case of travel.
If you have any further questions I'd be happy to help feel free to pm me. X

dreamdaisy

It's a new drug to you so my advice would be to leave it at home (if it turns up in time, that is). The last thing you need to be doing on holiday is trying to find a doc in Turkey who knows about JIA, enbrel, lack of meth etc etc etc. and also possibly coping with side-effects. Take a good supply of pain dullers for Tom, stuff for him to do if he does get into trouble with the dross, and have a few days of NOT THINKING about this rubbish. Then come home and start getting to grips with enbrel. Have a lovely time - gawd knows your family needs a burst of R&R after the very difficult year you have so far had. I wish you well and I hope you all have a lovely holiday. DD

stickywicket

Hope you have a great holiday and forget about arthritis as much as possible. I believe Turkey is beautiful.

Ankyspond

Hi,

I am on Enbrel, to be honest I woukd wait till you come back if he can.

I have been told I can only take it one day late, the letter to travel with it comes from the hospital (got mine yesterday), need to make sure you have a fridge while away that's set to 2-8, can get a specific fridge to take with you but it's €130, people saying they take in cool bags with ice blocks.

Would be easier to deal with at home after the holiday, as already said you will get a welcome pack with all info in there.

Hope you have a great time. Xx

tj66

Sorry I can't help re the drug issue!

Just wanted to say have a fab holiday - I was in Turkey this time last year-it was so lovely-hope you all have a great time and your able to have a rest and enjoy the sunshine.

Hope you get the help you need. x.

Tracey

lare73

thanks for the replies and support.

ive chatted to oh and tom and decided its best to wait til we come home like most of you have said. we really need a break and the warm weather helps tom. He is ok at the moment but we have got special travel insurance (at a large premium!) to cover eventualities.

i am very excited, never been to turkey so hope its lovely.

then we can refocus on our return and hope this embrel does its job.

cheers everyone, only 9 more sleeps

Ankyspond

Have a great time, remembering what works for one doesn't always work for the other but I started Enbrel in November and it has been fantastic on my back and hips. It is not working on my perifial joints but now going back on Methotrexate as well to hopefully stop that but my back pain score went down from 90+ to 0.5 in three months although it was quicker than that really. Hope this reassures you a bit. xx