methotrexate advice and experience please

sadie84 · 23. Jan 2013, 19:35

My 3 year old son dewi was diagnosed with systemic jia in november last year, he was given prednisolane 20mg daily and methotrexate10mg one day a week is rash and temp went straight away, the pain and swelling as not, some mornings he cant open is hands, he cant walk, his neck is stiff is chest is swollen and is painfull when caughing or laughing.some days are better than others, dewi normally starts to come around after 2-3 hours in the morning but then it starts back up towards the evening. just before christmas dewi was taken in to hospital to get a 3 day course of high dosage of steroids, we had one day of no swelling or pain which was hard because i wanted this to stop it for good. Dewi blood test are showing that is inflamation levels are not going doing and that they are staying the same, which is a high level and this is making me nervous. We had a hospital appointment today and was told that they was going to increase dewi methotrexate to 12.5mg and that they was only going to give it another four weeks to see some improvment or they would try another drug dewi has been on 10mg of methotrexate and 20 mg of the steroids for 8 weeks now, i have read and read about about all this and all that seems to appear is that when others have started taking these drugs they seem to start working quite quick.

can anyone give me any advice as at the moment i feel like i am in this battle and we aint winning, dewi on the other hand never moans or complains he thinks this is normal or normal for him, is 1 year old sister helps dewi by passing him cars that he wants.

thanks for listerening to my rant, it feels long over due.

stickywicket · 25. Jan 2013, 06:23

Bless your little lad! And his sister. Aren't kids wonderfully resilient? They could certainly teach us adults a thing or two.

It must be so hard, Sadie, to watch him struggling. I hope the increased meth will work for him. It's early days yet (though it won't seem so to you. You must feel like it's gone on forever) and it can take a fair bit of meds-juggling before things stabilise. Sometimes methotrexate is combined with other meds and sometimes substituted by another. There are plenty of options still.

I agree entirely - sometimes we all just need to get things out of our heads and down in black and white. Please keep on doing so if it helps. We, on here, can do very little but we understand arthritis and the meds and frustration and pain and we can always empathise. How is Dewi today?

OZange · 28. Jan 2013, 22:32

Hi sadie84,

I really hope Dewi is feeling better and you can keep your energy and positivity up. You seem to be a great mum and you will give your son a lot of energy.

I have a 3 year old son with oligoarticular JIA. He has been on Naprosyn and MTX for over a year now, we will start injection MTX as the tablet form doesn't help enough, one of his bones is already affected.

A few weeks ago the doctors suspected that my son might have polyarticular JIA with 6 joints affected. And they suggested to combine MTX with a biologic called Embrel. In the end the docs decided against it and we are still on Naprosyn and MTX.

I know systematic JIA is something completely different to oligoarticluar, but maybe ask your doc about biologic and if it is an option for you. It is a strong treatment though, so check the side effects.

Otherwise I have learned the last 12 months that if I want to know more about JIA and what our options are I have to do the research myself. The doctors are great where I live (Australia), but they don't give you enough information you need as a parent. I get a lot of great information and help from places like this or all the different organisations around the world. In the US there are a lot and UK is doing such a great job in arthritis research too. If you are interested I can send you some links.

All the best to you and your son. Send you some summer-sun-energy from Down Under!
ange

MumV · 29. Jan 2013, 15:58

Hi OZange,

Hello again, good luck with the MTX injection, let me know how your son responds to this, as you know this has been good for my daughter, but she is obviously old enough to administer this herself, and was older when diagnosed so our situations are different. Also treatments are changing and developing all the time.

I hope you get things under control for your little son. I am sorry to hear he has a bone affected. My daughters diagnosis is Polyarticular as she had 8 joints affected initially.

You sound like me for trying to find out as much as you can, and I agree with you, Arthritis Care and Research have certainly got reliable and sensible information there if wanted.

Well......we did get our snow....it was very picturesque for a few days...but has more or less gone now and is windy and wet.....but we love our mixed and ever changing weather!!! And we are not jealous of your lovely sun

Kind regards and wellness wishes for your son.

Hello Sadie84,

I can't really add anything to Sticky wicket and OZange s comments,

Except to say it can take time to sort out the right medication and everyone responds differently. Regards to you from mum to mum. Keep asking questions(and rant if you need to) lots of lovely people on the forum who kindly and willingly answer our queries(if they can) and offer a supportive listening ear.

Kind regards to you and wellness wishes for your son.

sadie84 · 30. Jan 2013, 12:13

Thanks to everyone for your kind words advice, dewi is pretty much the same

, we now have a appointment for ultra sound on wrists and stomach in a couple of days, i have to say dewi consultant is lovely she really explains things, and dewi calls her her doctor nice. At the moment i am not sure of the medication the are going to change him onto, she said she would explain when w cross that bridge if and when they do.
Thanks to everyone

methotrexate advice and experience please

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