Spondidlyo....what??? Advice please :)

chrissiewissie
chrissiewissie Member Posts: 75
edited 20. Apr 2013, 06:21 in Living with Arthritis archive
Hi Folks
After a bit of advice if possible from anyone who has experienced anything similar. I went to see the rheumy on Thursday and he has diagnosed spondyloarthropathy in my back, not a big surprise really, I was sort of expecting it as I'd seen him query it on correspondence over the past year so I'd googled it. I know, naughty!

He didn't want to call it AS because he says it usually affects men, but I've done a lot of reading and women can get it too just not as many of us. Maybe he didn't want to label me or something. Anyway, at least I know what group of diseases I belong to lol! I never seem to fit into a nice neat tidy little box for him to diagnose!!

Being allergic to most NSAIDs like diclofenac means he can only really start me off on the highest dose of slow release ibuprofen (3 x 800milligram a day) which I seem to be ok on and refer me for some heavy duty physio.

Has anyone else had problems getting a diagnosis or even had this diagnosis? It sucks that the only medication he would give me for this I'm not able to take!

I don't really know what to expect and I know everyone is different. I'm trying to stay positive as I'm an optimistic cup-half-full kinda gal by nature, but it is a bit of a kick in the teeth if I'm honest.

I already have OA in my feet to be getting on with and obviously didn't want to have something else to deal with at the same time.

Any advice or guidance would be appreciated.

Cxx

Comments

  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    I'm similar to you I have OA in hands feet and left knee but also have Inflammatory Arthritis and there does not seem to be a reason for mine
    I don't have RA or psoriatic or any of the others
    I would like a slot to fit into so I can say this is the type of inflamm Arthur I've got
    My nxt rheumy appointment is in April with a new consultant so think its time to ask more questions rather than just accept what I've got
    It's a minefield out there I keep looking but seem to go off at a tangent and start looking at other things Due to my useless hands I can't use computer for long
    I know none of this helps you as I'm confused with it all too
    Hope you get the answers you need
    Maria
  • chrissiewissie
    chrissiewissie Member Posts: 75
    edited 30. Nov -1, 00:00
    Hi Maria
    Thanks for the reply, it is a bit frustrating isn't it, but we're human beings not jigsaw pieces I guess!
    It's taken me 18 months to finally get a bit of an idea of what is going on with me, and part of me is just relieved that at least I know something.
    Cxx
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    I've had 10 yrs if this and still finding new problems
    Hope you get your answers you need
    Maria
  • spacey
    spacey Member Posts: 126
    edited 30. Nov -1, 00:00
    Hi I was diagnosed last year with inflammatory spondyloarthropathy although have been having problems since 2000. I currently take sulphasalazine, amitryptiline and celebrex and for me this combination is really helping and while it hasnt taken away my problems it is better than it was without. I also have a steroid injection when needed which does provide some further relief.
    I hope you find some relief too.
  • frogmella
    frogmella Member Posts: 1,111
    edited 30. Nov -1, 00:00
    Hi,

    I don't know how similar the two are but I have had facet joint arthritis - which is arther of the spine so I guess pretty similar? I know it can cause awful pain - in fact I have just had spinal fusion to deal with mine rather than keep coping with the pain. What pain do you have - "just" mechanical back pain or nerve pain too? I had both. There are different medications to deal with the nerve pain - I was on gabapentin and it helped a lot. I didn't find much helped with the back pain, I just upped my cocos and carried on! I did physio and also had diagnostic injections in my spine that provided a few months relief as a bonus. I have had spinal problems for years now - if you want any more info just ask and I will be happy to provide and advice/info that I have!
    Helen
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    yep i have seronegative arthritis, its taken a year to get people to believe me, and theyr still saying its query arthritis even though im on methotrexate. grrrr. im seeing a top specialist soon though so hopefully hel finally give me a proper diagnosis.
    I cant say ibuprofen/NSAIDs ever helped me.
  • chrissiewissie
    chrissiewissie Member Posts: 75
    edited 30. Nov -1, 00:00
    Thanks everyone
    It's definitely taken about a year for me to get the diagnosis and he's still only called it the group of diseases rather than the specific, But I did ready somewhere that they don't tend to call it ankylosing spondylitis anymore, but just spondyloarthropathy so maybe that was it. Who knows!
    Either way, my back hurts when I stand for too long, or sit for too long, or lie down for too long. It's different from mechanical back pain as it eases when I get up and move around. Am determined to stay as mobile as possible and to do the physio exercises they give me.
    Cxx
  • frogmella
    frogmella Member Posts: 1,111
    edited 30. Nov -1, 00:00
    That doesn't sound like fun - at least my back pain would resolve itself after a good few days doing nothing (only found that out when I had norovirus!). I think doing the exercises/physio is a good idea. I do as much as I can - if nothing else the endorphins released help a bit. Can you swim? I found that the best thing to do for me. Or walking?
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Oh chrissiewissie I do think that these consultant should get together to make sure that all test are done and not with months in between them... till we get a diagnosis..it so blinking frustrating having to wait sometime years to get answers..I have asked my GP again for another appointment to see a rheumy..the one and only time I saw one he was in an hurry to go to a funeral :o
    I have arthritis in my lumber so I do sympathies with you..hopefully they will come up with something you can take to ease it...please let us know how you get on xx
    Love
    Barbara
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    I'm the same as spacey medication wise but also on methotrexate since Jan but as yet its not started to help
    Pain wise im no different in fact \m worse than I was a year ago
    keep warm in this nasty weather
    Maria
  • chrissiewissie
    chrissiewissie Member Posts: 75
    edited 30. Nov -1, 00:00
    I would love to walk more but I also have OA in my feet so can't walk too much. Thinking of facing my fear and learning to swim!
    Cxx
  • chrissiewissie
    chrissiewissie Member Posts: 75
    edited 30. Nov -1, 00:00
    Quick update - got my letter from the rheumy after last week's appointment. He has confirmed AS. Not sure why he didn't just say that in the appointment but heigh ho!!
    He is referring me to a rheumatology physio. Stupid question but I'm wondering what sort of physio "intensive physio" means!!
    Cxx
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    glad you got your diagnosis, i dont know why they always say something different to your face, to what they put in the letter to your gp etc. i got told by a different medical specialty consultant that i didnt have something, and then he wrote to my gp and said i did and it was the worst sort! :roll:

    intensive physio just means a lot of physio/frequently.
  • chrissiewissie
    chrissiewissie Member Posts: 75
    edited 30. Nov -1, 00:00
    Thanks Lizzy, thought it was but always worth checking!!
    Doctors are funny creatures aren't they! He did note in my letter that I had stiffened up considerably sitting in the waiting room waiting to see him, so he was listening to what I said. Probably felt bad after my appointment being delayed by over an hour!
    Cxx
  • Pherstun
    Pherstun Member Posts: 96
    edited 30. Nov -1, 00:00
    Hi Chrissy

    I'm in a similar position to you in that I have AS symptoms but not all the tests are conclusive - they've told me it's undiagnosed spondyloarthropathy.

    I've recently joined the National Ankylosing Spondylitis Society and they published this article, which may help: http://www.nass.co.uk/about-as/getting-my-diagnosis/axial-spondyloarthritis-axial-spa/?keywords=axial+spondy

    I fall into the non-radiographic axial spondyloarthritis group (phew what a mouthful!). The article also says they are looking at adalimumab (Humira), a bacteriological injection, being prescribed for the condition - I have been on it for over a year, as they don't know quite what's wrong with me, and I have noticed a massive difference. I'm still in some pain and have bad days but it's a lot better.

    Debbie