Methotrexate sickness and how to cope with family life

Lollipop51
Lollipop51 Member Posts: 7
in My child has arthritis

Hello All,

We have a 14 year old son with JIA. He's been on Methotrexate for over 18 montha now. The sickness + anticipatory nausea lasts from Sat eve through to Mon lunchtime. Sundays are particularly bad- he doesn't leave the house+ just about manages breakfast. Even the smell of us cooking a meal is hard for him to tolerate.

How do other families cope with life when it is like this? We find it tough.Anyone got any tips on how to cope+ keep the morale up? Thanks, Lorraine.

Comments

  • chrisb
    chrisb Moderator Posts: 748

    Hi @Lollipop51  

    Welcome to the Versus Arthritis forum. 

    I see that your son has JIA and is suffering with the side effects of being on Methotrexate. You’d like to know how other families who have been in a similar position have managed to cope. 

    Well you’ve some to the right place to ask the question and I hope that other forum members are able to offer some useful advice. 

    Whilst our main website has a sections on JIA and Methotrexate this doesn’t really address your question which is more about how families cope with the symptoms, however, just in case here are a couple of links which you may find useful: 

    https://www.versusarthritis.org/search?query=JIA

     

    https://www.versusarthritis.org/search?query=Methotrexate


    I’m sure you’ll receive some useful input from forum members who have found themselves in a similar position. 

    Best Wishes

    ChrisB (Moderator)

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Lollipop51
    Lollipop51 Member Posts: 7

    Hi Chris,


    Thank you. It's a hard situation to be in.


    Best wishes,

    Lorraine.

  • stickywicket
    stickywicket Member Posts: 27,764

    Hi Susan,

    I'm fortunate that I've never had any problems taking my methotrexate but lots of people on here have. The usual solutions are:

    1. Take it at night time to get the worst of the nausea over with while asleep.

    2. Split the dose ie half in the morning and half in the evening.

    3. Take folic acid every day except methotrexate day.

    4. Take the methotrexate by injection not orally.

    The rheumatologist would have to be involved in 3 and 4 and it would be wise to ring the rheumatology helpline whatever you were thinking of doing but, as a mother of two adult sons and grandmother to a 14 yr old and 12 yr old, I think your son is being very mature in simply continuing under such difficulties. Many wouldn't. I assume he always take it with food.

    I do hope you can resolve the issue but remember methotrexate isn't the only DMARD available.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Lollipop51
    Lollipop51 Member Posts: 7

    Hi,


    Thank you- these are some helpful tips.

    Our son has his Methotrexate injection at 8pm and takes his first anti- sickness medication at 4pm. This does help a bit. We've been told by a few people including the Rheumatology team that he can take the folic acid every day apart from Methotrexate day,but he can only face it the day after and once a week. It is a good point you make that it is not the only DMARD.

    I have total respect and compassion for those who live with arthritis and experience Methotrexate sickness.

  • frogmorton
    frogmorton Member Posts: 29,915

    Oh dear.

    Anticipatory nausea this is not good. When my daughter was on chemo she was the same even the thought of some of the chemos was enough to make her sick.

    The only thing I can suggest is taking it at night before bed so some of it is 'slept off'.

    Other than that you must speak to his rheumatology team. Sending ((()))

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