Newly Diagnosed with PA and Needing Help - Please!

paulaleatherdale
paulaleatherdale Member Posts: 7
edited 30. Aug 2011, 02:29 in Living with Arthritis archive
Hi
I have recently been diagnosed with psoriatic arthritis following more than 10 years of pain, rubbish anti-inflams and painkillers!
My bone scan showed inflammation in my entire spine, chest, shoulders, hips and feet but I didn’t ask what this really means… I was told that the good news was that I didn’t have bone cancer – the shock of knowing that this had been a concern made me forget to ask questions!
I have now been taking sulphasalazine for a month, I have had steroid injections and I am awaiting physio but I haven’t been given pain killers – is this usual?
I am struggling with the side effects of sulphasalazine, nausea, headaches, tiredness and feeling pretty low to be honest. I was told that the side effects would pass in time and so I have prepared myself for the long haul, however I am not sure how long I should be waiting – can anyone tell me how long this may last?
I seem to be spending my life with constant pain and stiffness, recently things have got so much more worse. I know that exercise helps but even when I try to do simple exercise such as a bit of housework or a short walk- I spend the next 2 days in severe pain and unable to get up off the sofa to even wash or dress, this causes further stiffness and pain – I seem to be trapped in a vicious circle and just can’t think of any way to break it….
I feel like my life is passing me by and I will never be able to walk without pain, tears, a limp or stoop again – I am also aware that I am not painting a pretty picture of myself here, I used to be a happy and motivated and not this miserable bugger moaning here – apologies for this!
I am aware that the sulphasalazine may take up to 6months to “kick in” but I am hoping that someone may have some advice, please!
Should I be asking for painkillers and can you take them with sulphasalazine?
I hate to moan at the GP, I always try to be upbeat as I am sure that after 10 years of moaning, he thinks I am a hypochondriac! My rheumatologist is lovely but I dont see him often!
Anyway, any advice regarding psoriatic arthritis and its management would be appreciated massively…. Did anyone else have to so long for a diagnosis, Im so worried that there has been horrendous joint damage due to the long wait – Im worried that this will never get better and constant pain and stiffness is now my life.
Again, apologies for moaning but its so hard to explain to others the huge impact that this has had upon my life, that I had no choice but to come and moan to those that know!
Thanks lots and lots
Paula x

Comments

  • frogmorton
    frogmorton Member Posts: 28,076
    edited 30. Nov -1, 00:00
    Oh Paula :sad:

    You poor thing!!

    Og courseyou must ask for painkillers and anti-inflammatories if you dont have those. GP will be able to prescribe those for you straight away. He/she may also be able to prescribe you with something for your nausea side effect of the sulfa...certainly worth asking.

    I understand how you feel that panic that life will always be like this and its all over for me.

    BUT honestly it isn't it will be better than this - maybe sulfa is the one for you - maybe not and you will need a different medication or another added to the sulfa. Time will tell, but in the meantime please get some pain relief.

    Finally can l say l am so glad you found this forum and will be able to get support and help from us lot and at the very least let off some steam.

    Keep posting - trust me it helps....more than you can imagine :wink:

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi Paula, it's nice to meet you but I am sorry you have had to find us. I too have PA, I am into my fifteenth year of it (undiagnosed for nine so you beat me!) and I too am on sulph, plus methotrexate and humira. To be honest the PA is having a go at me today (it's been dormant for a while) so I am about to log off and go for a snooze, but I will be back, if not later today then tomorrow, and I will try to answer any questions that you might have. I wish you well and I hope today isn't going too badly for you. DD
  • paulaleatherdale
    paulaleatherdale Member Posts: 7
    edited 4. Sep 2011, 13:01
    ...
  • frogmorton
    frogmorton Member Posts: 28,076
    edited 30. Nov -1, 00:00
    [.
    I wish I could give you both a “high five” but I can’t lift my arms that high!! ;)
    Hope to speak soon
    Paula x[/quote]


    We'll take a low high five in lieu!!!

    Things will get better Paula - just got to get sorted out and you know pain and nausea are two of the worst things anyone can have to cope with. On teh phone first thing tomorrow eh?

    Love

    Toni xx
  • paulaleatherdale
    paulaleatherdale Member Posts: 7
    edited 30. Nov -1, 00:00
    Hi Toni
    A "low five" it is then!
    Thank you so much..... I will absolutley be on the phone first thing, the GP receptionist doesnt scare me....much!
    Speak soon
    Paula x

    P.S Can the GP alter your meds or do have you to wait to see the rheumatologist again?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My GP has nothing to do with the 'hospital' meds, ie the meth and humira, she only supplies the others I need to get me through the day. She cheerfully admits she knows very little about the M and H and prefers to leave that to the hospital. Mine has a rheumatology helpline, does yours? I seee my consultant once every six months, in between those times it's a rheumatology nurse.

    When I began the sulph I had mulitple bruising for a while but that faded. Sulph keeps the P bit of the PA at bay, so well in fact that I am rarely troubled by the skin side of things. I have been on the maximum dose for nine years now and have aquired tinnitus but that is manageable inasmuch as it doesn't hurt. I have been on injected meth for at least three years now and have no trouble with that, the same with the humira (just over two years). It can take a while to find the right combination of meds to suit, which is frustrating while it is going on. Right, off to battle with cooking dinner. I am so not in the mood for this. :lol: DD
  • paulaleatherdale
    paulaleatherdale Member Posts: 7
    edited 4. Sep 2011, 13:00
    ...
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I've never googled anything medical that is relevant to me and never will. I now cook sitting down, it takes longer but I can do it, the same with washing up, ironing and hoovering. Having arthritis doesn't necessarily mean you can't do things around the house, it means you have to adapt how you do things. It's a pain today (literally) as the hands are going for it, elbows and shoulders too (that is what tells me it's a flare, usually it's just the toes, ankles, knees and sacro iliacs that twang). Neve rmind, it will pass, all things do.

    Re the meds, I think it's safe to say that you will be on medication of one sort or another for the forseeable future and I hope you can find the magic combination of pills/injections that works for you. Once they work the usual procedure is to stay on them to keep things under control. DD
  • paulaleatherdale
    paulaleatherdale Member Posts: 7
    edited 4. Sep 2011, 13:02
    ...
  • kellerman
    kellerman Member Posts: 741
    edited 30. Nov -1, 00:00
    Hi Paula,
    I'm sorry I can't help.I'm new myself and my GP says OA but who knows,certainly not me.
    Dreamdaisy is right about looking up things on the internet. I've had cancer twice and I'm so glad I didn't Google the type of chemo I had. Would of petrefied me.
    There are some great folk on here.I always feel better when I post and know that the people I'm talking to understand.
    Keep posting and take care
    May
  • paulaleatherdale
    paulaleatherdale Member Posts: 7
    edited 4. Sep 2011, 13:02
    ...
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Paula,

    I also have pa and its not really that easy sometimes eh? I have had oa since my teens so originally it was just lumped on to that. Then they said ra but the rf wasn't there so it got ignored for a few more years.

    Thankfully I see a rumo for other things and one day had the sense to ask what was wrong with my wrists. Its gone after them, the feet and the fingers as well as sharing with the oa in my neck and who knows where else really.

    I get swelling, heat, redness and lack of movement.

    I so agree don't google but if you contact the helplines here they will send you out an info pack which will help you to understand it better. You can ask for one either via email, pm or with the phone number at the top of the page cus your consultant is right the more you understand it the easier it is, just not the scare storied.

    Glad your going to asking for some pain killers, really sounds like you could do with some. Its a shame you have got to ask but.

    It gets easier the more your understand it, the better controlled both the inflammation and the pain is and well hang in there. Nice to meet you. Cris x
  • frogmorton
    frogmorton Member Posts: 28,076
    edited 30. Nov -1, 00:00
    Paula

    googling can be a big mistake!!!


    But coming on this site is not they have plenty of really useful leaflets you can download and have a read. they are not contradictory or biased nice and clear and objective. :smile:

    I hope that you now feel you are getting somewhere???

    Oh by the way kids and food.....you can make your own stuff and freeze it on good days then at least they only have to defrost and warm stuff up for the bad days. YOU will then feel a 'better' mum like we need to at times! Guilt is not something you want to add to your worries!! :wink:

    Love and hugs

    Toni xx

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