Hi, looking to help 19 year old son

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liz4999
liz4999 Member Posts: 5
edited 20. May 2015, 09:36 in Say Hello Archive
Hello,

I found you while looking for my son who in September last year - working as a landscape gardener was bitten, we think it was a snake. He started with huge rashes and eventually swelling to joints. After 3 months he was told he had 'Sero negative inflammatory arthritis'. After trying Methotrexate (liver nearly stopped working) he is now on 4 x 500 of Sulfasalazine and 4 x 5mg prednisolone...he has been told to reduce the steroids but his symptoms don't seem to be any different and will get worse if he does....should we expect them to get better the longer he takes sulfasalazine??
He has had to stop working as he can't do the heavy work and at the moment we are supporting him, we are now looking at his options - which seem to be few. Does anyone else have experiences similar to ours? I would love to hear from you.

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Welcome to Arthritis Care Forums liz4999 from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Mod JK
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    Hello Liz and welcome from me too. As a mother of two adult sons, and two young grandsons, I really feel for you.

    I have no experience similar to your son's, I'm afraid. I started with RA when I was 15 but in a very ordinary way with painful lumps and bumps on my finger joints.

    The good news is that DMARDS (of which methotrexate and sulphasalazine are two) are now available and your son has been started on them quickly. That makes a big difference to his future outlook.

    I have never heard of anyone getting any form of arthritis from a snake bite or, indeed, any other insect bite though there is something called Reactive Arthritis (ReA) which can result from an infection and later clear up. Inflammatory arthritises are all, to the best of my knowledge, auto-immune diseases. Usually, but not always, there is a genetic component then a trigger. You might like to check out some of Arthritis Care's info on different types of arthritis. http://www.arthritiscare.org.uk/PublicationsandResources/Listedbysubject

    I'd guess the prednisolone was prescribed to tide your son over until the sulphasalazine started working. (It can take up to 12 weeks.) Although pred can seem like a miracle drug it doesn't really do much for the disease itself: it just masks the symptoms and, taken long term, is not a good idea. But it can be very hard to get off it especially the last few.

    I guess landscape gardening will not be an easy option for him. How interested is he in the planning side? Might there be something he could do more on a computer?

    I'm afraid there are no easy, one-size-fits-all answers with arthritis. He might find the sulph works really well. He might not. Other options might be needed but it all takes time and, sadly, pain.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
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    Hello Liz, and welcome.

    Like Sticky, I have two adult sons & two grandsons, so I very much sympathise with your son`s misfortune. It normally takes anything up to 12 weeks for any of the DMARDs, such as MTX, Sulphsalazine, to take effect. Neither of them worked for me, but nowadays some rheumatologists seem to prefer a combination of meds - up to three for what they call Triple Therapy, so your son may get another drug to work alongside the SLZ.

    Steroids are very helpful in reducing inflammation, but bring their own problems if taken long term. I`m not sure if you have access to a rheumy nurse - if so, now might be a good time to speak to him/her for advice, or earlier access to a consultant.
  • liz4999
    liz4999 Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thank you for your replies, Stickywicket we expected him to be diagnosed with Reactive when we knew it was arthritis but they said that they couldn't be sure that it was the bite that caused it.....although they have said that his auto immune system has gone it overload fighting 'something'. We have been told it may be 'short lived', a couple of years and the fact that its very aggressive - he regularly can't move, is a good sign apparently, but they don't know for sure.
    It's all very frustrating for a 19 year old who was extremely strong, fit and working up to 50 hours a week.
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    The diagnosis does seem a bit uncertain as to which type of arthritis he has. Many people live for years with the imprecise diagnosis of 'inflammatory arthritis' until / unless something or other clears up which type it is. As far as treatment goes, though, it's much the same whichever so nothing is lost by that.

    I think the only kind of arthritis that is short lived is reactive so maybe they're still hoping it's that. I presume, given his job, they've ruled out Lyme Disease (caused by tic bites). We've had more than one person on here who initially thought they had arthritis but it proved to be Lyme.

    When you say he regularly 'can't move', how literally do you mean that? All of us with an auto-immune form of arthritis have days and times when movement is excruciating but I think I only recall once or twice when I literally couldn't move. My medication was changed because moving is important (as Arthritis Care is pointing out during this week). Many of us are on double or triple therapy and, depending on how long he's been on sulph, the rheumatologist might want to chuck something else into the mix.

    As for his age and former fitness – I hope the latter will return but arthritis is oblivious to all that. It moves in at will and leaves us to deal with the consequences.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 29,414
    edited 30. Nov -1, 00:00
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    Hi Liz

    A quick hello from me too and welcome to our forums.

    I can see you have received plenty of advice and support already.

    I have girls myself (17 and 20), one of whom is fighting leukaemia so I know how awful it is when one of our kids is ill and we can't fix it :(

    In your shoes I would keep hassling rheumatology until they can sort out his medication so that it actually helps a bit more.

    Sending you much love and ((()))

    Toni xxx
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