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superlauren321
superlauren321 Member Posts: 2
edited 5. Mar 2014, 14:14 in Say Hello Archive
hi everyone,

just thought I'd pop on here and say hello and introduce myself.
im 26 and my husband is 25. we have 2 children age 6 and 1.
my husband has had back pain persistently for 2 years, and after a lot of pushing with the doctors for adequate pain relief, he was diagnosed with ankylosing spondylitis and couple of weeks ago, which was a relief, plus he felt like people were finally taking his pain seriously.
only thing is, he had a really bad day on Tuesday, and after being literally unable to walk all day, I took him to see the out of hours gp who prescribed tramadol (he had been averaging 3 hours sleep a night for about 6 months). this made him incredibly sick, so I spoke to his consultants secretary on Wednesday, who offered us an emergency appointment for Thursday for a steroid injection.
on Thursday we spent 2 hours with the specialist nurse, who after giving him an injection, started explaining about tnf injections. I don't know if its standard procedure elsewhere but our nhs trusts referral system for this is 3 months, and it was put through that day. obviously im thrilled that we're getting some treatment for him, but the sudden seriousness of it all has floored me. we saw the consultant long enough for her to say that his mri scan shows 'significant erosion of the vertebrae' and the nurse said that she wasn't prepared to elaborate, but we needed to get him started on this treatment or he'll be in a wheelchair before long.
has anyone else experienced this? my husband is taking it all in his stride as hes grateful for the treatment, but to be honest im really scared, and I don't know whether its about the damage that has already been done, or the long term implications on our life (we've already had to get a different car to help him get in and out of, and its even dawned on me that we'll have to get him extra leg room on the plane when we go abroad)
im really sorry for the ramble, if you've got this far then thank you for reading, its nice to get this off my chest x

Comments

  • stickywicket
    stickywicket Member Posts: 27,712
    edited 30. Nov -1, 00:00
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    Hello superlauren 321. It's good to meet you but I'm sorry to hear of all your husband's problems. He's certainly been struggling for some time but I'm still amazed that he's been referred for anti-tnfs so quickly. Perhaps the system is different for AS but, for other auto-immune forms of arthritis, one has to fail on 3 DMARDS before getting an anti-tnf referral. Anyway, your man is on his way and I hope he derives great benefit from whichever one he is prescribed.

    I also hope the fears about him otherwise being in a wheelchair soon prove exaggerated. I was told in my early 20s that I was likely to end up in a wheelchair before I was 30. I'm now 67. I do use a wheelchair for long country 'walks' but not for day to day use. Having said that, mine is RA and I do have 2 replaced hips and knees.Spines are not as easily fixed.

    It must all have come as a shock and I can well understand your fears for the future but I suggest that, while keeping an eye on the future, you concentrate on the present. There are lots of aids and adaptions that can make life easier. As for plane travel – if you contact your airline in advance you can explain his difficulties and ask for a seat with more leg room. This usually means a bulkhead seat. I like them but my husband doesn't as, despite the extra leg room, the seats themselves are slightly narrower as the TV screen and tray fold down into the side. If you know what type of plane you're on you can research the best seats at www.seatguru.com If your husband finds the standing and queueing difficult, your airline will also arrange wheelchair assistance at the airport again if asked in advance. I hope you manage a good holiday. I guess you'll both need it :)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Lauren and a warm welcome to the forum
    I have Arthritis in my back and a few other places..so I do feel for your husband, he does seem to have a good team going there and getting what treatment there is..sorry I know nothing of the TNFs..I hope he get some relief very soon..like you say you feel better now you have got this off your chest, I always say its the best way of coping with things..you will get lots of info and support off the forum so I do hope to see you posting more very soon..x
    Love
    Barbara
  • Silvertortoise
    Silvertortoise Member Posts: 14
    edited 30. Nov -1, 00:00
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    Hello Lauren 321
    Welcome to the forum, i have osteoarthritis in my knees , i was diagnosed after christmas, not long , so like you i am new to all this and although i cannot give you much information i just wanted to welcome you to the forum.At the beginning i worried so much about how much pain i would be in a few years, how much i would have to wait for a knee replacement..etc...it got very stressful!!! I just think about the present now and how to manage everyday, joinning the forum is been very helpful too.You will find lots of information and very caring people .
    I hope things get better soon.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi Superlauren
    Welcome to the forum.......there are lots of people that know more about your husbands meds than I do.
    I have OA in various joints but also spinal problems.
    Please don't think about the future........think about the here and now.
    Everyone is different and everyone's arthritis progresses at different speeds.
    It's easy enough to get extra space on a plane and any help your husband needs to get onto the plane and off again..You just have to ask....ring them in advance.
    You say your husband is taking it in his stride......that's great......you try to go along with him. If he was worried about it you would have a more difficult job :wink:
    Most things are possible to do only in a different way.......its harder for woman I think because we have the housework to contend with. :lol:
    I don't mean to lecture.....just giving you my experience of arthritis and spinal problems {although I know nothing about those drugs...sorry} Plenty will :D
    I have a car and drive so I'm blessed.....because I cant walk very far. I have a scooter {rarely used} but I'm recovering from a hip replacement and it is great...... weeks post op I fractured that hip so a lot more recovery :cry:
    Normally.....I use the car, I have a 4 wheel rollator and also use crutches for longer distances. So it's do-able.....try to take things as they come please
    Keep in touch and just ask anything you want to know

    Love
    Hileena
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