Hello people..

ColdFusion
ColdFusion Member Posts: 4
edited 10. Feb 2020, 06:49 in Say hello
A quick introduction... I have had psoriatic arthritis since I was 10 years old... the arthritis fist and the psoriasis later. My mother took me to the doctor one day when I couldn't walk because the pain in my right knee was so bad... the doctor said there was nothing wrong with me and I probably just didn't want to go to school.. and that continued for 50 years, seeing one quack after the other masquerading as medical professionals, until I finally got a diagnosis last week.. and everything fell into place. I have never met anyone with the same condition and have often felt utterly frustrated and very alone as none of the medical professionals I have ever seen understood the condition until last week of course. I'm right in the middle of a major flare-up, (left ankle, both knees and left wrist).. Its nice to be part of the group..

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi ColdFusion,

    welcome to the forum, it’s lovely to meet you. That’s a very long time to wait for a diagnosis- we are used to years but certainly not that many. Well the good news now (though possibly not for the flare) is that PsA otherwise psoriatic arthritis can be pretty well controlled for most folk, it might take a while to get the meds combo sorted but once it is you should be better off.

    As you are new to diagnosis I’m attaching a link to the information we have on PsA.

    https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

    I’m guessing you will have quite a few coping strategies yourself by now but if you have any concerns or queries please do post on here so we can help you.

    The one thing you are not is alone, so moans are fine, even encouraged because often there are things our nearest family even will struggle to understand, and honestly maybe that’s for the best too, but we do because we’ve likely been there or somewhere similar ourselves.

    I’m glad you’ve finally got your diagnosis, now you can move forward x

    Take care
    Yvonne x
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Hello and welcome. You are certainly not alone with your PsA on here, although I think you may take the prize for the longest wait for a diagnosis! It can be quiet here at weekends but in due course others will chip in to offer their support.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I just typed a long answer, pressed submit, it appeared on the thread then disappeared.

    Right, short version as I truly cannot be #)_:&+ to type it all again. My PsA began in 1997, I began meds with no diagnosis in 2002 and was officially diagnosed in 2006 which changed nothing. I inject weekly methotrexate and fortnightly humira which control diesease activity but nothing more.

    PsA is a sero-negative form of an auto-immune arthritis (AIA) so those not in the know read a blood test result and assume an AIA is not the cause of the trouble. It traditionally begins in the smaller joints so when it doesn't that further confuses the issue. It damages the joints differently to other AIAs in that it attacks the entheses, the bits where muscles and tendons attach to the bones.

    OA was diagnosed in 2011, for that I take the minimum of my pain dullers and focus on distraction. I know when it is going to be worse which makes it easier to live with. I exercise on a daily basis, focusing on joint mobility and resistance.DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ColdFusion
    ColdFusion Member Posts: 4
    edited 30. Nov -1, 00:00
    I don't think I ever really recovered from being told I was making it all up and there was nothing wrong with me, so its interesting to hear that others know that psoriatic arthritis is hard to identify. In 2007 I had all the tests at a rheumatology clinic and of course they all came back negative... the consultants view? No evidence of inflammatory arthritis.. or to put it another way.. I don't believe you, go away and don't come back, sorry if I sound angry, but if I'd had the correct treatment my joints wouldn't be so badly damaged now, especially my spine. In 2009 I spent three days in hospital because the arthritis attacked my right hip (my hips have been attacked many times) at first they suspected septic arthritis, then on the fourth morning the pain was beginning to ease, a consultant came round and said .. oh its just some form of gouty arthritis, you can go home now... Why is every medical professional is obsessed with fluid around the affected joint, I have plenty of swelling and no fluid, this is something they don't seem to understand, and the opinion seems to be what they don't understand they just dismiss as being of no consequence..

    You did say I could moan about it a bit.. well I suppose a lot really, but thanks for the understanding and supportive replies..
  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    ColdFusion, by my reckoning you have about 50 years worth of 'moaning' to work through so please feel free :D

    I'm glad you finally have a diagnosis. Which DMARDS are/will you be on? I take methotrexate and hydroxychloroquine for my RA. I've had it since I was 15 when it was classed as Stills Disease. It gradually morphed into RA over the (very many) years but new docs did keep getting excited about my mother's psoriasis although they always had to concede in the end that I didn't have PsA.

    My diagnosis was easy. I'd been laid up for 3 months aged 11 with 'rheumatic fever' – probably the onset. But that didn't make any difference because, back in 1961, DMARDS weren't around. As a result, I have an 'interesting-looking :wink: ' body, every joint skewed in its own preferred manner apart from the replaced ones though some of them have now shifted too :roll:

    In defence of docs (and I do seem to end up defending them a lot on here :? ) a sero-negative type of arthritis is difficult to diagnose precisely because the blood test that GP's do to check for the rheumatoid factor comes back negative. Rheumatologists have more tools at their disposal and your rheumatologist should have picked up on it but, if you read some of the posts on here, inflammatory arthritises are wily beasts which often defy categorisation. I confess, I don't understand swelling without fluid either. I thought that our bodies produced fluid to protect damaged joints. If there's no fluid what is swelling? Certainly, my own joints are all knobbly these days because of them fusing but, when it was all happening, I recall having lots of fluid drained off knees.

    I find myself wondering if, given that you've not been on DMARDS, you've actually also developed OA (osteoarthritis). I have it because DMARDS weren't available in my early years; some have it because their inflammatory arthritis wasn't treated quickly enough. But, if you do, that could cloud the diagnostic picture even further as the OA damage might be more obvious than the PsA damage. I admit I find it amazing that you've managed for so long without DMARDS. I was without them for my first 20 years of RA and, by then, I needed new knees. The new hips came later and the many self-fusing joints added themselves to the mix. What I'm saying is that, in my experience, 50 years worth of no DMARDS would, I imagine, have rendered me totally rigid :shock: so, if yours aren't, I think that might be another factor complicating diagnosis.

    The good news is that you are now diagnosed and the PsA can be treated and, hopefully, deterred. You may get a new lease of life. I know my life changed for the better with the arrival of methotrexate and hydroxy. And we, on here, understand the frustrations and limitations, not to mention pain, and are always here to share moans and triumphs. (check out Living With Arthritis's 'Triumphs' thread)
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • ColdFusion
    ColdFusion Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks for your comments, in 1970 after my first visit to the doctor, where I was dismissed as making it up, my right knee became so bad as to be almost locked in position, the GP having proved worse than useless, my father took me to the hospital, after ten days lots of poking and prodding innumerable x-rays and no treatment whatsoever, they decided I had either juvenile RA, or this mysterious rheumatic fever that you mention, it just means they didn't know and didn't want to admit it. I recovered on my own and was discharged, no follow up, nothing, I suppose there just wasn't then, especially if you were a child. fortunately repeat attacks were not often perhaps only once a year until my twentys when things went really array, by that time I often used to work through the pain, what I couldn't understand was that other people with "arthritis" just seemed to get on with it, and I could barely move, the pressure was on me to stop being so pathetic and grin and bear it. Fast forward to the age of 30 and the GP decided I had gout and OA, I certainly did develop gout, even though my urate level was not overly excessive, but it was completely different from anything else I had to endure, so I knew the difference even though my GP insisted everything was down to gout and OA, which I also have. I was treated with Colchine, Allopurinol and Febuxostat. Sadly nothing happened and of course it wouldn't, in fact allopurilnol made everything much worse. Fast forward a bit and my GP told me there was one other thing I could try as a last resort even though it was expensive, and that was Etoricoxib. Curiously he had accidentally hit on the one thing that actually worked and improved my quality of life no end. Everything finally came together when I asked for some more Elocon for my psoriasis, (I have the inverse form) that was the beginning of the journey to a proper diagnosis, it was like the light being switched on, both for me and him.. and that's where I am at the moment.. The cumulative effect of a low dose of etoricoxib certainly lessens the severity and frequency of attack, but as I mentioned above I am going through a major attack at the moment, my right wrist and all my fingers have started this morning and even though I can take 120mg of the stuff for 8 days, that time is up tomorrow, and it makes me really sick too without cyclizine hydrochloride.. so I can see a lot more trips to the surgery in the very near future..

    The fluid I refer to is within the joint itself, I never actually have fluid inside the affected joint, all the swelling (consequently fluid) is on the outside, this is what the "professionals" can't understand

    I'm interested to know if anyone has anything notable proceeding an attack, I have noticed I become very tired and my mood is low about five days before ... anyone else..?
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    When I had the first sets of blood tests my inflammatory markers (ESR and CRP) were up in the 160s - 170s which led to the first stabs in the dark at treating an AIA. What have yours been? Auto-immune inflammation is a dfferent beast to that which arises in OA, that is localised and disperses with rest whereas the auto-imune affects the whole body and needs more than a mere anti-inflammatory to control matters.

    You undoubtedly have some auto-immune inflammatory stuff going on but whether an AIA is also present is uncertain. In my case I needed a synovectomy to remove five years' worth of fresh and solidified inflammation which had increased my left knee to 27" in circumference. At this point (2002) I was still being bounced gently between rheumatology and orthopaedics. Due to rheumatology not being fully satisified I was one of their gang the op had to be repeated 18 months later then done on the other knee a few years later.

    There are around ten million arthritics in the UK with the majority having OA: I am ofnthe opinion that its ubiquity works against it. I know when the OA is going to be beastly but the PsA marches to the beat of a very different drum, an invisible and inaudible one. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    If you've read the exxcellent link which Mod Yvonne provided you'll see that PsA is easily confused with gout. Unless we present with classic symptoms inflammatory forms of arthritis can be tough to diagnose.

    I'm glad the etoricoxib uis helping but it's only a Non-Steroidal Anti Inflammatory Drug (NSAID). This will help with inflammation but won't slow down the progress of the disease. For that you need a Disease Modifying Anti Rheumatic Drug (DMARD) and for those we need a rheumatologist. GPs can't prescribe them except as directed by a rheumatologist.

    Rheumatologists tend to have long waiting lists so, if you're going to be on NSAIDS for any length of time, you'll need a stomach-protecting med to go with them - omeprazole and lansoprazole are the usual ones.

    The fatigue is usually caused by the disease. Once on DMARDS you should be much better.

    By the way, I still don't understand the inflammation thing. Certainly, RA destroys the synovial fluid which lubricates healthy joints but, when flaring, I've had huge knees, sausage fingers etc due to the inflammation.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran