Sarah new here

Sarahb181279
Sarahb181279 Member Posts: 18
edited 2. Apr 2018, 12:49 in Say Hello Archive
I am in process of diagnosis at moment the rheumatologist is thinking psoriatic arthritis. It started August of last year I am 38 and I must say I have never experienced pain like this in my life. Today it’s been a bad knee day the burning the throbbing the constant fatigue well it’s like this most days and seems to be getting worse to be honest. I have joined here to hopefully share stories get advice and chat to people who get how I am feeling look forward to chatting to you all x


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Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hi Sarah welcome to the forum,sorry you are in a lot of pain,but you have come to the right place to chat and exchange stories, there are lots of friendly and sympathetic people who will understand what you are going through.
    The forums that are most popular forums are Living with Arthritis and Chit Chat.
    All the best Christine
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I too have PsA but for considerably longer - my story is therefore of no relevance because everyone is different in how they are affected. Like you I bucked the trend with it starting in my left knee, it more usually starts in the smaller joints of the body such as the fingers and toes. A friend of mine also has PsA , he was diagnosed quickly and is wonderfully controlled on six tablets of sulphasalazine per day - he is ten years or more in, it affects only his hands and is still able to do everything he did pre-diagnosis.

    For me it was no great surprise when this nonsense started, I was born with eczema, developed asthma aged seven (both auto-immune conditions) so this is more of the same. If you do not have a history of auto-immune troubles then it must be a real shock. People associate arthritis with the elderly and think there are two kinds, RA and osteo none of which is true, I started mine aged 37 but it can also affect children as young as eighteen months old. People also do not understand how tired an uncontrolled auto-immune arthritis can make you feel - and it's not a nice 'tired' is it? We, however, do understand, we get it because we've got it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Sarahb181279
    Sarahb181279 Member Posts: 18
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, it's nice to meet you but I am sorry you have had to find us. I too have PsA but for considerably longer - my story is therefore of no relevance because everyone is different in how they are affected. Like you I bucked the trend with it starting in my left knee, it more usually starts in the smaller joints of the body such as the fingers and toes. A friend of mine also has PsA , he was diagnosed quickly and is wonderfully controlled on six tablets of sulphasalazine per day - he is ten years or more in, it affects only his hands and is still able to do everything he did pre-diagnosis.

    For me it was no great surprise when this nonsense started, I was born with eczema, developed asthma aged seven (both auto-immune conditions) so this is more of the same. If you do not have a history of auto-immune troubles then it must be a real shock. People associate arthritis with the elderly and think there are two kinds, RA and osteo none of which is true, I started mine aged 37 but it can also affect children as young as eighteen months old. People also do not understand how tired an uncontrolled auto-immune arthritis can make you feel - and it's not a nice 'tired' is it? We, however, do understand, we get it because we've got it. DD
    It’s a horrible tired I feel so weak. I got two boys and I am on my own living with them I just struggle to get through the day x



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  • stickywicket
    stickywicket Member Posts: 26,251
    edited 30. Nov -1, 00:00
    Hi Sarah. You'll see there are a lot of us on here with various forms of arthritis and we're glad to help any way we can. I have RA and remember the days when my sons were young. They were utterly exhausting and painful.

    What medication have you been prescribed? Is it helping or have you not been on it long enough yet?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Sarahb181279
    Sarahb181279 Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi Sarah. You'll see there are a lot of us on here with various forms of arthritis and we're glad to help any way we can. I have RA and remember the days when my sons were young. They were utterly exhausting and painful.

    What medication have you been prescribed? Is it helping or have you not been on it long enough yet?
    I am on naproxen and MST I am not getting much benefit I am not on the other meds yet I am waiting to see rheumatologist x


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  • stickywicket
    stickywicket Member Posts: 26,251
    edited 30. Nov -1, 00:00
    Naproxen is an anti-inflammatory med. I've never heard of the other one. If the rheumatologist thinks you have PsA I wonder why you've not been put on a DMARD (Disease Modifying Anti-Rheumatic Drug) such as methotrexate. When do you next see the rheumatologist?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Sarahb181279
    Sarahb181279 Member Posts: 18
    edited 30. Nov -1, 00:00
    Naproxen is an anti-inflammatory med. I've never heard of the other one. If the rheumatologist thinks you have PsA I wonder why you've not been put on a DMARD (Disease Modifying Anti-Rheumatic Drug) such as methotrexate. When do you next see the rheumatologist?
    Well I was supposed to see them last Thursday unfortunately I was snowed in and all appointments were cancelled in hospital. So have to wait a few weeks again now my first appointment I paid privately cause I couldn’t wait the 9 months so I am basically waiting for second appointment. He wanted me to have x rays of my knees and a spinal mri before taking next steps xx


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  • stickywicket
    stickywicket Member Posts: 26,251
    edited 30. Nov -1, 00:00
    I'm afraid the weather played havoc with many things but it must have been very disappointing to miss your appointment and have everything put back.

    I'm not quite sure why the private rheumatologist didn't prescribe a DMARD if he thought you had PsA. Did you get the scans done?

    If your rheumatology appointment doesn't come through soon you could always go back to your GP. Naproxen is just an anti-inflammatory which GPs can prescribe. There are others which you might find more helpful though many rheumatologists dislike their patients being on them when they first see them as they can lower inflammation and so make diagnosis harder. I'd guess that your other med is some sort of 'painkiller'. Again, others are available.

    Unfortunately, even DMARDS don't work instantly so you might have to wait for things to improve after seeing the rheumatologist. But sometimes they prescribe a short course of steroids to tide patients over.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Sarahb181279
    Sarahb181279 Member Posts: 18
    edited 30. Nov -1, 00:00
    I'm afraid the weather played havoc with many things but it must have been very disappointing to miss your appointment and have everything put back.

    I'm not quite sure why the private rheumatologist didn't prescribe a DMARD if he thought you had PsA. Did you get the scans done?

    If your rheumatology appointment doesn't come through soon you could always go back to your GP. Naproxen is just an anti-inflammatory which GPs can prescribe. There are others which you might find more helpful though many rheumatologists dislike their patients being on them when they first see them as they can lower inflammation and so make diagnosis harder. I'd guess that your other med is some sort of 'painkiller'. Again, others are available.

    Unfortunately, even DMARDS don't work instantly so you might have to wait for things to improve after seeing the rheumatologist. But sometimes they prescribe a short course of steroids to tide patients over.
    I have had the scans done just after Xmas but I got to wait to see the rheumatologist for result and yes MST is slow release morphine on a very low dose as I have been on co codamol for years for other health reasons and this was next step for pain xxx


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  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I am so sorry you were not able to see the rheumatologist on the day, that will indeed set things back. Over my rheumatic years I have noted that GPs are far quicker off the ball to refer people to rheumatology because they are more aware of auto-immune arthritis; this can only be a good thing. I was finally referred by the physios at our local football club (the reasoning behind my seeing them being if anyone knew about dodgy knees they would) not to rheumatology but to orthopaedics which finally gave me the 'in'. Mind you they referred me in late 2000, I saw ortho in early 2001 who referred me to rheumatology who bounced me back to ortho all of which wasted a year. :roll: I assure you things are far better now.

    I never had much success with naproxen (I assume you have also been prescribed a stomach protector) but it works well for my husband's gout: one man's miracle med is another's waste of time. I have been on 30/500 cocos for years and am happy enough with what they offer, I get by on usually four per day but I am older than you, used to it all and nowhere near as busy. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Macbee
    Macbee Member Posts: 12
    edited 30. Nov -1, 00:00
    "I must say I have never experienced pain like this in my life. Today it’s been a bad knee day the burning the throbbing the constant fatigue well it’s like this most days and seems to be getting worse to be honest."

    Hi, I remember that horrible level of pain and fatigue I had pre treatment, and the anxiety if things just getting worse day by day but not knowing why. It is awful. Sorry you're going through this too. Wondered if you've seen that rheumatologist yet or got any closer to a diagnosis or an answer?
    If his suspicions are right, I hope you'll be started on more effective meds soon.
    Macbee