lare - how's Tom?

dreamdaisy
dreamdaisy Member Posts: 31,520
edited 15. Jun 2011, 13:16 in My child has arthritis
Hi lare, I am sure you are rushed off your feet at the mo but I have been wondering how Tom is doing: I hope he is as well as he can be and that the recent harsh weather didn't impinge too much! Thinking of you both. DD

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Still thinking about you both. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi DD, how are you??? happy belated new year :oops:

    i havent been on much due to illness, i am a lot better now and things are getting back to normal, i never fogot about everyone on here.

    tom is not too bad, hands are sore and knees and ankles flare up, his mood is quite low, we are wondering if after 3 months on mtx it is affecting his mood, obviously he is entering the teenage years so this could also be a factor. what worries me is has gone from a placid quiet boy, to an impatient, intolerant and sometimes aggressive boy. this is unusual for him and is becomming more apparent as each day goes by. he hates taking his mtx and we have a face pulling session, then he suffers with tummy ache and fatigue, this passes after 2 days. he does pe again, but keeps falling then takes an age for his cuts to heal. at present he has a cold, he has a mouth full of ulcers and bruises all over. he immune system is shot. his inflammation markers have come down with the mtx so doctors are happy, he still has physio for muscle weakness, but they arent that interested in the mood side of things. so, some good news in there if you look hard enough lol.
    so, hope you are well and hope to catch up soon, clare x
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Hi Clare - good to hear from you as I have been wondering how you both have been getting on. I am sorry it is not all good news. Just a thought on the stomachs ache and sickness - I do know someone who found drinking coke helped when taking mtx orally. Just a suggestion. Take care both of you.
    Lucy
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Meth is an absolute **** of a drug. If one is inclined to the side effects (as Tom appears to be, he has the classic ones) then life is rendered totally miserable for a couple of days (or longer) whilst the body processes it. Meanwhile the arthritis jaunts along, completely unaffected by the dross we throw at it - your boy is struggling with a foul disease, foul meds and is generally being cheated of a decent life. Is it any wonder he is grouchy? OK, his inflammation markers may be reduced (mine are basically not registering they are that low) but the pain persists, the discomfort is always there, life is a struggle. Of course the docs are pleased but they are not living with the fall-out. I am an aged old crone of 51 with a remarkably short temper which I can control - he is 13 now, yes? The control mechanisms are not yet established, and won't be for a while yet. I think you are right, you can probably add in the surging testosterone to boot, so no wonder he is grumbling.

    I am amazed he is still doing PE. Is this because he wants to or he has to? Meth does reduce the immune system and cuts etc do take longer to heal. The mouth full of ulcers is definitely the meth, the bruising, well that could be a combination of PE and meth. Your poor, poor boy, what a deal to contend with, and for little reward. I truly feel for him - and for you as you are on the receiving end of all the grief. This is your struggle as much as it is his.

    The coke tip is a good one, I have a can of full fat (diet just DOES NOT cut the mustard) after my alendronic acid pill (I take that weekly, on an empty stomach and it causes some nausea for a while - the coke helps that). Try that with Tom, see if it helps. Ring the helpline, perhaps, they have a wealth of experience and will happily listen to someone crying down the phone. (I know that 'cos I know someone here who did just that, rang and cried and not one word of censure was uttered.) Don't forget you need as much support as Tom, possibly more. I wish you both well. DD

    PS It might be worth your while finding out if he can increase the amount of folic acid he takes: that is supposed to support cell renewal etc and could help with the ghastly side effects he is having.
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi all,

    sorry not been on for ages, life has been bedlam to say the least.

    Tom is not good, knees and fingers bad again and neck is very sore, it seems we are going full circle and getting back to square one, each joint is flaring up.
    I feel so dejected and sorry for my son who is so trying to be 'normal', PE is now getting too much again, writing is hard and his mood is very low.
    He asked me 'do you think people will think im a nerd if i go to the library at lunchtime because i cant play football as i get pain?' this broke my heart.

    i thought the mtx had cracked it there was even talk of reducing the dose due to the sickness he suffers when taking it, i fear this may not happen now. he bruises terribly and heals so slowly. he is back at the hospital in april so will see what they say.
    My house is very stressed at the moment, my oh is stressed, my oldest has exams, my youngest is having 'terrible twos', i am having tests at the moment for crohns disease and rheumatoid arthritis, i know there are people much worse off but feeling very rubbish at the moment.

    Thanks for reading my moan xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh you are all going through the mill at the moment, aren't you? Has anyone suggested injectable meth for Tom? The liquid is stronger than the tablets so a smaller dose is required, and this usually helps a fair bit in curtailing the side effects. It could be an option to discuss with his care team.

    As for you, oh lordy lordy - RA? Do let us know what the results are for you - I hope it isn't. There are others on the forum who have both Crohns and RA so you may well find some help and support from them, if needs be. I wish you all well. DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi lare, is there any news about you and your health? I hope that both you and Tom are as well as you can be. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    Hi,
    Thanks for asking, awaiting appointments.
    Tom as his next week, so see what they say, hope your well x
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi tom is going back to physio and is wating for more ultrasound on knees and ankles, as these are the worst joints this time.
    doc wants to put him on mtx injections instead of tablets as the sickness is getting worse not better and he is becomming reluctant to take it anymore and fridays are becomming a battlefield :roll:

    and to add, i have been diagnosed with arthritis this week and crohns disease so awaiting ct scan and then treatment to start, rheummy wanted to give me steroid im injection but said we should wait for all tests to come back, my eyes are inflammed too so having them looked at too!

    Tom said to me ' i rememeber when i was in hospital you said to me i wish i could have it for you, and now you have as well'. mine is nowhere as severe as toms, but hard with no medication, we now have a giggle about it at home and say when a chore needs doing 'we cant we got a disease!' humour works for us :grin:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh lare, I am so sorry to read this. I hope the injected meth works for Tom - I am on that and have had no trouble with any side-effects so I hope the same comes true for him. I do my own jabs (in my tummy, fewer nerve endings there!) and it's quite straightforward.

    As for you, well I am so sorry you have joined our creaking club. If you do have a steroid jab I hope it works for you - they can be wonderful things I am told - and I guess you'll be on the tablet meth etc? Let us know how you get on, please.

    As for me, well I am in week two of the flare from hell, I am right back to where I was four years ago which is hugely dispiriting. I suspect the last twenty one months have been a complete waste of my time and the hospital's money viz the meds. :roll: Never mind, eh? It matters not. You look after yourself and your lovely lad and I hope you both find that things start improving soon. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    Hi dd, hope your ok and your flare has gone on holiday! Well tom had his first mtx injection this week, he felt sick but think its the thought of it. He is handling things really well.im very proud he is truely stoic.
    Asfor me, well i had a miscarriage a few weeks ago, so been tough, the crohns is bad at the mo and hands and knees hurt, can have meds now ad they were reluctant to start amy due to the pregnancy.
    So, there you go,lifes still testing, but, we are still here and enjoying what we can.
    Hope your well
    Takecarex
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh lare, I am so, so sorry to read your latest news about you. How very sad but sometimes things are not meant to be - yup, I know, very cold comfort but I am bereft of words.

    I am glad that Tom has moved to injected meth, I hope that makes the difference to him re the sickness and the arthritis - my fingers are crossed.

    As for me, I note that I answered you on 18 April. I found out the next day that I have OA in my knees and that that has caused some damage, hence the pain. The bone growths are amazing - I swear you could hang a coathanger on them (with or without a garment) . I am waiting to hear from orthopaedics.

    Ghastly: my longest answer is about me. :oops: Look after you, keep looking after Tom and please, keep in touch. I wish you both well. DD

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