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Diagnoses but no treatment

Hi all,

I hope you're doing ok today 😀

I finally received my diagnoses this afternoon as having psoriatic arthritis in my hands.

Alongside swelling I have experienced severe fatigue, chronic pain and my hands turning blue on occasion.

My rheumatologist said my arthritis isn't bad enough to cause these symptoms and added fibromyalgia to my diagnoses.

I probably do have fibro as I have pain in lots of places, so I'm happy to try treatment for it, but my question is this:

Is it normal to have a watch and wait approach on psoriatic arthritis in your hands? Everything I have read suggests that early treatment is what stops deformities and my middle finger is already changing shape. Should I be advocating for myself on this one and pushing to be treated for my hands?

Thanks in advance for your thoughts and experiences,

Rom

  1. Hi @rom1987, I'm pleased to read that you have finally got some answers. If I remember correctly, you have been waiting for a diagnosis for quite some time. How are you feeling about all of this?

    I am not sure what the norm is, but I have been diagnosed by two rheumatologists and both had very different approaches. The first, in 2012, told me that my PsA was not bad enough to be treated and discharged me. Looking back, I'm kind of surprised because I could hardly walk and was in bed for 23 hours a day with fatigue ! The second, in 2017, was quite insistent that I start medication as soon as possible, to get the inflammation under control and prevent joint damage. I did by this point have PsA in some of my fingers, although I'm not sure whether that specifically had anything to do with him wanting me to start treatment straight away.

    Are you due to check back in with the rheumatologist again at some point about how you're managing? I think if you have these questions, and are noticing changes in your fingers, it's definitely worth a conversation with them.

    I hope that you'll get some input on this from other community members. Please keep us updated on how you're doing if you can. Sending gentle hugs! -Catherine, Community Moderator

    1. Hi @CathyD

      Yes thats me... to be honest, relieved I have answers and can move forward with life a little bit! I don't cope well with not knowing the problem.

      Thank you for your insight... I do have a follow up in 6 months so will write down my questions. Good to know there are multiple approaches/no one right way!

      Thank you

      Rom

    2. @rom1987, I am exactly the same - It does help to have a name to explain what's going on. I'm glad to hear that you have a follow-up appointment later this year. Good call on writing down your questions - I usually forget everything I wanted to ask as soon as I see my doctor, argh!! Feel free to reach out if you have any more questions. Hope this weekend has been kind to you! -Catherine, Community Moderator

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