Psoriatic Arthritis at 31

sianheff
sianheff Member Posts: 7
edited 30. Nov 2018, 08:26 in Say Hello Archive
Hi All,

I was officially diagnosed yesterday with PsA and give a steroid injection (depomedrone) and told if it is eases my symptoms then I will be put on methotrexate and/or sulfasalazine.

I have had joint aches and pains since I was about 15 but always fobbed off and made to feel like a hypochondriac. It seems that every winter another joint begins to really ache. It used to always be my knees but last year it was my right foot (all along the outside was extremely sensitive to even touch and felt a bit like bad bruising). This year it is my hands...my left hand especially hard to even clench a fist. One of the knuckles on my left little finger has been extremely painful for weeks but recently eased off. I have had MRI's on both hips and sacrum but they didn't show anything. I had ultrasounds on my hands and feet. Bizarrely my left hand showed no inflammation and my right hand had grade 2 synovitis although not where I normally get the pain?! Other than my RF being very slightly raised at 20 all other bloods are fine except vitamin D being a bit low. The ultrasounds also showed plantar fasciitis. When I wake up in the morning I hobble around like I am 81 not 31 and get terrible pain in my feet. I also have very mild psoriasis in my scalp.

Finally getting a rheumatologist to diagnose PsA even when scans are either not showing anything or what they are showing is mild has been very overwhelming and I almost had a little panic attack thinking maybe I am imagining all these symptoms over the years...surely I can't actually have arthritis!! Has anyone else been diagnosed with PsA despite negative tests?? Am I imagining my symptoms??

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi sianheff
    Welcome to the forum,what a horrible time you are having at the moment,just to reassure you a doctor would not have diagnosed you with PsA if you didn't have the symptoms so it is definitely not imagined. This forum is full of lovely understanding and encouraging people who will understand what you are going through and they all have Arthritis of some kind so just choose a forum and get chatting.
    All the best Christine
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Hi there,

    I am similar and was diagnosed with PA in my late 20s.

    Even my recent scans and bloods I've been told are not showing up high levels to get on certain treatments even though I have swollen joints all over me and hardly being able to walk, use my hands etc are visible to see, I feel sometimes I am not being heard and it really frustrates me.

    Hopefully you get on some kind of treatment sooner rather than later, some didn't help me but obviously help others so if the first one doesn't work there are other options you should get to try.

    I feel your pain, good luck.

    Cheers,
    John
  • Weej01
    Weej01 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi

    You are definitely not imagining your symptoms. I myself have just been diagnosed at 38. I also thought I was just over thinking my symptoms and have to say when the rheumatologist said I had PsA (I have no skin psoriasis) I was a bit in shock. I honestly thought he was going to tell me there was nothing wrong with me and I needed to man up! I too will start on methotrexate and if it helps he hadn’t even seen my blood results to tell me this. He did this from my history and he did ultrasounds of my worst affected joints and there is already some damage. My hands particularly are affected. Not sure if it helps but people that I have spoken to who have had methotrexate, despite the side effects, often feel so much better. My consultant said the aim is to get me back to normal which would be amazing, even close to normal right now would be a bonus!

    Good luck
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Weej01 wrote:
    Hi

    You are definitely not imagining your symptoms. I myself have just been diagnosed at 38. I also thought I was just over thinking my symptoms and have to say when the rheumatologist said I had PsA (I have no skin psoriasis) I was a bit in shock. I honestly thought he was going to tell me there was nothing wrong with me and I needed to man up! I too will start on methotrexate and if it helps he hadn’t even seen my blood results to tell me this. He did this from my history and he did ultrasounds of my worst affected joints and there is already some damage. My hands particularly are affected. Not sure if it helps but people that I have spoken to who have had methotrexate, despite the side effects, often feel so much better. My consultant said the aim is to get me back to normal which would be amazing, even close to normal right now would be a bonus!

    Good luck

    Hi,

    Out of all the DMARDs I've tried methotrexate has been the best, and if people have psoraisis as well like myself this can also help with that. I didn't like the tablets and found the injections much better side effects wise, although the second time I tried this it was too much for me and had to try something else. As I am not on any treatment now (long story) I have asked to be out back on this!!

    It's amazing to hear all the different strories where some GPs/Consultants seem to help more than others.

    Hope it helps you get back to normal-ish.

    Cheers,
    John
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Welcome to the forum Weej01 and thanks for adding your recent experiences to this post. I hope the methotrexate works well for you - do keep us posted with how you get on.
    Sianheff, your experiences with the difficulties of diagnosis and test results sound similar to mine. It can be so frustrating and confusing. Finally getting a diagnosis after years of being dismissed is a big deal emotionally, no wonder you are feeling overwhelmed.
    As John says, some GPs/Consultants do seem more willing to take symptoms seriously and look at the bigger picture, even when some test results might be inconclusive.
    Good luck to you both!

    Ann
  • sianheff
    sianheff Member Posts: 7
    edited 30. Nov -1, 00:00
    Thank you all. It makes me feel better to know I am not the only one with these feelings. Weej01 I definitely thought I was going to be told to man up!! When I get the pains in my feet first thing in the morning and the achey hands that hurt to clench I just started to think everyone must have this but don't moan about it like me!! I just thought it must be normal but apparently not. I don't know what to make of it all really. I had the steroid injection on Tuesday but I don't think it has kicked in yet because everything was still painful this morning. As there is nothing on any tests results that give a certain answer I still think I must be imagining the pain!! The only relevance was a slightly raised RF (20) and the grade 2 synovitis in my right hand but that's it! My right hand is not even too painful it's my left hand that is worse and that didn't show any inflammation.

    Thanks again everyone.
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Hello and welcome to both of you though, as we say in these parts, sorry you had to find us.

    I have RA and OA, the OA being the result of no Disease Modifying Anti-Rheumatic Drugs (DMARDS) being available back in 1961. (Yes, I'm ancient :wink: )

    Sian, psoriatic arthritis always (I think) tests negative for the rheumatoid factor. Even rheumatoid arthritis does sometimes. Rheumatologists don't rely on just one test.

    Have a good look around the forums, both of you, and, if you've any questions, just ask away, preferably on the Living with Arthritis forum as more people look on there. And just join in on any thread anywhere. We're a friendly lot :D
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I have PsA too, I began aged 37 and am now 59. I've replied recently to new ones with PsA and other stuff so please read their threads because I am not up to typing it all again. :| DD
  • Weej01
    Weej01 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi all

    Thanks to all for your help and encouraging comments.
    Sianheff I got my steroid injection on Monday and only really feel some of the ‘fluey’ Symptoms have lifted. I spoke to the nurse specialist and she said it can take a few days for it to kick in. I feel like an 80 year old in the morning and at night. It seems most of my joints are affected including my back, but some days are better than others. I hope you start to feel better soon.

    Stickywiclet thanks for the advice re the other forums, I will definitely ha e a good look around.

    Thanks
  • sianheff
    sianheff Member Posts: 7
    edited 30. Nov -1, 00:00
    Oh wow it’s like we are at the exact same stage of treatment!! I am still hoping to wake up tomorrow and feel fresh as a daisy!! Come on steroids!!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I hope the steroids help you to feel better but they are a con: they only mask the disease, they do not address the root cause and, if over-used, cause more health troubles. They work by thinning all body tissues, not just the dodgy ones, personally I never found any benefit from the injected versions but when they work they do make a huge difference. Then they stop working and it all comes back . . . . DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello weej, I would give anything to feel like my 80 year old neighbour: she complains that she cannot garden for 90 minutes any more, can kneel with ease, walks her dog twice a day and has not one single twinge of anything arthritic. I reckon I'm doing the 'classic' old age stuff for her which is very kind of me. :lol: I began with PsA aged 37, I am now 59 and have that plus OA.

    I apologise for not saying hello to you properly but I missed you as you came on someone else's thread. DD
  • Weej01
    Weej01 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi DD

    Thank you for your insight as you have obviously dealt with your arthritis for a lot longer than me. Having both PsA and OA must be tough. The steroids have given me a very slight relief for now, but appreciate it won’t last.

    Sianheff yes I think we are at pretty much the same treatment stage. Good to know I am not alone. I hope you are maybe getting a little relief from your steroid injection?

    Thanks

    Jen
  • sianheff
    sianheff Member Posts: 7
    edited 30. Nov -1, 00:00
    Nothing yet Jen. Maybe tomorrow I will get up without excruciating pains in the bottoms of my feet!!

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