tom's mum here - mtx question

lare73

hi there,

im clare - toms mum - he was 13 last week and was diagnosed with JIA in July 2010.

hes had steriod injections is on piricoxam, lanzaprozole,dihydracodeine and paracetomal.

he is not good at the moment, has knee,hips,shoulders and big toe pain and swelling.
we are seeing the rheumatologist again next week, (brought the appoint forward)and more injections likely.
there was talk of starting methatextrate (SP?) and wondered if anyone could offer advice as have read mixed reports.

also, waiting for physio, as suspected now that he has JIA with ERA, poor lad, he is low at the moment, hard to motivate him.
thanks for reading, x

marion1952

Hi Clare

Really sorry to hear about Tom. It's early days though, and I am sure he will improve a lot once he starts on something like methotrexate.. I am personally a great fan of methotrexate - it has worked really really well for me (I have rheumatoid arthritis).

You might be best looking at the Young People's Forum of this website. I know there have been parents of very young children with JIA who are on methotrexate who have posed on that forum.

Wishing you and Tom all the best.

Marion

lare73

hey marian

thanks for the reply, hope your well,

i have been on chit chat and young persons, thought id come in here too for the more medical chat, im finding the site fab, lovely people and just what we need to get through this tough time,

nice to know its not just us, thank you again xx

robertls

Hello Clare.......

I Have RA, and am on MTX for 12 months.......I had problems with side effects when I started it........

But on the whole I think its made things better overall...

I would recommend it......

Rob x

tkachev

Good luck to Tom. Methotrexate did help my pain a lot but it did keep wearing off so had to keep upping the dose on my rheumatologists advice. I think the side effects of nausea and fatigue arent very nice but different people get different degrees of sickness and fatigue and some non at all.
I think i prefer the side effects to the pain.

Elizabeth

marion1952

Hi Clare

Sorry - my head is like a seive . I've just remembered I read your posts on the Young People's Forum recently..

How/when did Tom's symptoms start?

Am I right in thinking he is under the LGI? He will be in good hands there.. (Prof E and his team are world renown).

Has he tried hydrotherapy yet? I would recommend it..

The early months after diagnosis are really difficult Clare. I knew nothing about RA until I developed it in 2008 and now I'm amazed to find so many people have it.. I live on a small street and to my amazement the young woman next-door-but-one to me told me she had had JIA (she is a successful accountant and travels widely) and also a girl about 8 doors down also had JIA (she went to Uni and is now a Maths teacher ..)

Marion

clairy

Hi Clare,

Sorry to here of your son's diagnosis. I was diagnosed with ERA JIA when i was 15, so hugs to Tom. Methotrexate works for a lot of people unfortunately there are no guarantees with any of the medications, but hopefully it will bring him some relief. Only issues i had was some nausea which was sorted out with an anti sickness tablet.

If you have any questions just ask.

skezier

Hi Clare,

i am so sorry Tom has been diagnosed with this. I understand his lack of motivation and hope so much he will respond to the treatments.

I am on mtx and have been fr a while. I am sure that it will help me if we just find the right dose. I also have been lucky with the side effect, I felt a bit sick when I went up to 15 and my hair is thinning but except for that I have been ok on it.

I am sorry I am not much help but sending a ((( ))) to you and a hope Tom soon feels better and well, bless him, it takes a bit of time to get you head round it all.I expect it does for you as well? I really hope the rumo can help and nice to meet you. Cris x

lare73

hi everyone and thanks for reply, apologies for late reply but ive been at work all day (im a theatre nurse).

its great to hear all your different experiences, not quite so scary now, tom has had a good day today, seems a bit brighter this evening.


thank you for all your kindness
clare xx

wibberley

Hi Clare,

Sorry, I don't take mtx but have heard many success stories so hope Tom will be another.

I have JIA - am now 44 but was diagnosed age 7. The treatments available these days are great, when I think back to the horrible stuff I had to take (mixed with milk and jam to help it stay down!), I cringe.

I second the hydrotherapy advice. Even in my most painful days, I felt so good in water. Good luck to Tom with the treatment - I hope he feels much better soon.

Lois x

dorcas

Hi Clare nice to meet you.

I'm coming in late to your thread but just wanted to say I hope Tom continues to feel a bit better today and that the docs find the effective dose for Tom to control arther without making him feel unwell.


Irisx

dreamdaisy

Hi lare, how's Tom today? He's facing a tough battle, poor lad, I'm not surprised he's a bit down about it all, as I'm sure you all are. Thinking of you. DD

lare73

hi,

toms not too bad today
but any tips on how to motivate him??? he's lost his get-up-and-go, which is sad to see.

he wants to just lay on the sofa and watch tv all day. we have taken him swimming and had days out, but i think he's frightened of over doing it then getting more pain then have to have more injections, which he really didnt like.

clare x

dreamdaisy

It's hard to motivate someone to do things which they know will hurt them later on. I can cope with it but I'm an adult. He has a great deal with which to come to terms, don't push him too hard. Imagine that you have constant toothache - you know the misery of that. Now imagine that sort of feeling in your joints that match his affected joints. Would you want to be doing things that will make the toothache worse? Arthritis is also tiring: he may well lack the energy to do stuff - he may know that too but can't articulate it. Give him time. Let him rest. DD

marion1952

Hi Clare

The swimming will be good, if he's up to it. The fatigue that comes with arthritis is a blooming problem... it's a bit like that overwhelming tiredness you get in early pregnancy..

Perhaps some of his friends could come round for a DVD night? (sorry - that's probably stating the obvious) ..

I'm sure Speedy will be able to give you some ideas - she will probably be on the forum tomrorow.

Is he going back to school at the beginning of term?

Sorry - I know this is such a worry for you - really wish I had a magic wand Clare..

Marion x

woodbon

I agree with DD, it is hard to do things that you know cause pain, even as an adult, I find it hard sometimes, to do my exercises, even though I understand the need and the good they do.

Sorry, I can't remember, but did you say you'd spoken to the physio about this? I know that some of the exercises I do have been changed slightly and pillows and stuff used to make them more comfortable and some of them stopped for now, or changed. Physio has to be adapted for the person, as some of us arn't built to do some of the exercises. The physio won't mind you questioning her and it may help motivate your son if he can be helped to be more comfortable. JUst a thought.
I wish you both well and hope he finds a way of actually feeling some good from the exercises, that would make him motived! Lots of love Suexxx

lare73

morning,

thanks for the replys, i agree with you all, i dont want to push tom to do things, but have to admit im a little scared that if i allow him to just rest all the time he will get worse as he isnt using his muscles etc, he has lost over 2 stone in the last 3 months.
we are waiting for physio appointment to come through so hopefully that will help and i will be asking the doctor about hydrotherapy as he is most comfortable when hes in the water.

he is laid in bed today as he's feeling rubbish today, shoulders, knee, back of his neck and ankle.
everyday is hard and after the shock of the diagnosis, its trying to establish a routine for him, which is mostly impossible as i dont know how hes going to be from one day to the next
he is due to go back to school next week and i am concerned about it, but mot showing it outwardly,
sorry to be a bit negative today, clare x

dreamdaisy

It's a lot to get to grips with: none of US know how we are going to be from day-to-day and I think you have the worse end of the deal - you can see he is in pain and can do nothing to stop it or ease it. I feel for you, and I feel for him too: the injustice of this gets my blood boiling. Leave him be: arthritis is wearing, it saps one's energy, drains one's enthusiasm. I know there are concerns about losing muscle strength but just doing some basic isomettric exercises will help to keep some strength in them. Give yourselves time to learn how to cope - none of you will manage that overnight. Be kind to yourselves. DD

lare73

hi everyone.
thought i'd give you all a tom update - wish it was better news,
the arthritis is now in his neck and back, he has been put on prednisolone, and going to physio, he goes back in 3 weeks to commence methatextrate and have steroid injection in his hips,knee,ankle and shoulder under a general anaesthetic.

please excuse my spelling errors but i am very upset, tom is quiet and low. he is to stay on his current meds also.
this is a blow as we were just coming to terms with things and feel this is a major step back.
he goes back to school next week so need to meet with teachers to explain his condition, have also been advised to claim DLA, which appears to be a mindfield!
not sure what else to say except hope you and yours are all feeling better than we are, we appreciate some people are much worse off than us, but having a feel sorry for ourselves day, xx

dreamdaisy

Oh lare, I am so sorry. This is awful. Poor Tom and poor you. I cannot do or say anything that will help, but I am thinking of you both. Feeble, I know, but that's it, that's my offering. I am so sorry. DD

marion1952

Hello Clare

I'm really sorry that Tom's arthritis has now gone into his back and neck.. inflammatory arthritis can/does move around and come and go in various joints.

The prednisolone WILL get it under control pretty quickly in the short term though. It's good that the rheumatologist is starting him on a DMARD (eg methotrexate) in 3 weeks, as research now shows that patients do better if they start a DMARD soon after diagnosis.

It is going to take time to 'get used' to the diagnosis though...

Please let us know how he gets on with the Prednisolone.

Marion x

dorcas

Hello Clare

so sorry Tom...and you...have got so much to deal with. this is an awful condition and so unfair especially when it affects children. :roll:

I hope the combination of steroids and Mtx bring things under control quickly. x

Applying for DLA is a good idea. Try contacting CAB in your area...they are very skilled and experienced in completing the forms.

please keep us updated. even though we can't change things (wish I had a magic wand) we can at least listen and offer you support.

(((hugs)))

Iris x

dreamdaisy

Morning lare73, and Tom. I know the world will not be a brighter place just yet - I am thinking of you both, be kind to yourselves and have some thorough, proper grumpy time. It is necessary, occasionally. DD

marion1952

Hello Clare

How are things with Tom?
Any signs of the prednisolone kicking in yet?

Marion

lare73

hi there,
just update on tom.

he has been on the steroids for 6 days and i cannot believe the improvement!!
he is moving well, still stiff in the morning but much better than before, he has gone out today with friends,

the side effects we have noticed are he gets very tired early evening, and his appetite is massive! which is lovely as the past few months it has been nonexistent and he's lost over 2 stone, so seeing him enjoy food is great, we will monitor it though as dont want him gaining too much weight for obvious reasons.
hope he takes as well to the mtx in a couple of weeks.

hope everyone is having a nice day
clare x

dorcas

Hi Clare

how lovely to hear how well Tom is doing on the steroids.

being able to go out with his friends again must be such an uplift for him...and you.

thanks for keeping us updated. hope Tom continues to do well and I'll keep my fingers crossed the Myx helps him without side effects..... some people don't suffer from any side effects so maybe Tom will be one of them.

(((hugs)))

Iris x