Newly Diagnosed - Hello everyone!

Zibbydoo
Zibbydoo Member Posts: 7
edited 28. Nov 2023, 14:09 in Living with arthritis

Hello,

I've been recently diagnosed with Psoriatic Arthritis, It's been quite scary how quickly it progressed with first symptoms of stiffness in mid October 2022 for which the GP receptionists refused me a GP appt and booked me a physio appt, thankfully the physio took a brief look and wrote to the GP that I needed to be urgently assessed and likely referred. Early Nov GP prescribed Naproxen and requested a referral to Rheumatology, but by mid November I could barely walk and do stairs with more joints becoming painful and I was pretty terrified not knowing what would be impacted next and how my mobility and quality of life would be affected.

The info pack I got from the hospital prior to my appt was really useful giving info on symptoms, the likely treatment options if diagnosis confirmed and advice regarding diet and activity and other resources. I did some research and this really helped me be a lot more optimistic and hopeful

I saw the Rheumatologist yesterday who confirmed Psoriatic Arthritis and Sjogren's syndrome with 11 joints currently impacted, immediately injected my worst joints with steroids with an additional shot in my bum. They also prescribed Methotrexate which I'll start under supervision of a nurse practitioner after I get some baseline blood tests and x-rays done. She also recommended Versus Arthritis as a good resource.

I'm still trying to come to terms with having a chronic disease both the pain and fatigue are pretty full on, but feel better that there is a treatment plan, hopeful that the steroids kick in and help with the immediate pain and grateful that there are things that I can do to help myself (diet and exercise).

I'm looking forward to joining this community to share support and experiences


Thanks

Comments

  • Tiffany33
    Tiffany33 Member Posts: 4

    I'm also new to having Psoriatic Arthritis and it's been hard going, I'm on metoject injection and have been for 10 weeks or so it has helped. I hope u get better soon and know you're not alone.

  • Woofy
    Woofy Member Posts: 254

    Hello Zibbydoo.

    sorry you are going through this. You are in good company here.

    i have found this site fantastic, and everyone really friendly, and happy to share their stories.

    it does make you feel less alone.

  • movingslowly
    movingslowly Member Posts: 64

    Hello @Zibbydoo 👋🏻

  • jamieA
    jamieA Member Posts: 667

    Hi @Zibbydoo

    I was in a similar position - from a single swollen knee to full blown PsA in multiple joints in 6 weeks. From some of the comments I've seen on here in the last 2 years I think there's quite a few of us on this forum that have experienced a rapid progression of inflammatory arthritis. With me it took 8 months from diagnosis to finding the right drugs - in my case a biologic - and then another 2 months for that to fully kick in. During that time I was dependent on steroids and opiates but since the adalimumab biologic started working I've not really needed much if any of either. I was referred to a pain management clinic, an occupational therapist, a rheumatology podiatrist and rheumatology physiotherapist which have all helped get me functioning again.

    One thing I've learned is not to be passive in my dealings with medical staff and to put any concerns in writing. I'd also suggest keeping a diary both of your symptoms and treatments. I went from 1 pill a day for mild hypertension before PsA to almost 200 pills a week at one point in 2021. 2021 is pretty much a blur to me so having my daily diary detailing my progression - good and bad - is helpful.

    I'm now back to being able to walk 50-60kms a week with my dog, back to cooking and starting to get back into amateur photography.

    I hope you get sorted and stabilised soon.

  • Zibbydoo
    Zibbydoo Member Posts: 7

    Hi @jamieA,

    Thanks for sharing, I had started keeping a log of my medication, joints affected, weight and a commentary about pain or any changes, the rheumatologist wasn't super interested in it. but you've given me confidence to keep going, but I'll probably drop it down to weekly + anything to highlight, so it's easier review.

    My pain is constant just in varying levels, maybe it's not something just to accept and I should be more assertive in requesting support. I've gone from the occasional Beroca if I'm feeling under the weather to a bunch of pills which has meant I've needed to get organised.

    Hearing that you are back walking 50-60 kms a week is giving me some hope as the stairs in the house are currently my nemesis which has been hard to get my head around as only a few short months ago I would be choosing to take the stairs up 6 levels instead of the lift.

    Hope and patience with modern medicine with a side of self advocacy is my current mantra! :)

  • LauraL
    LauraL Member Posts: 4

    Hi,

    I’ve been diagnosed today with Psoriatic Arthritis which has come as bit of a shock. Symptoms came on very suddenly in the summer of 2022. I was referred to physios and have yet to be seen by my GP face to face. Blood tests came back negative and just kept being told as the blood tests are negative there is nothing they can do. In the meantime my company introduced a new employee benefit where I got access to a private GP and private healthcare. Within 4 weeks I’ve seen the consultant, MRI scanned and diagnosed. I have inflammation in both ankles, wrists and hands along with my lower spine and hips. I thought I was going mad. I’ve been put on a 3 week course of steroids to firefight the inflammation and then go back in 3 weeks to begin treatment plan which apparently needs to go back to the NHS due to their excellent wrap around care. I’m happy with that decision. what I’m concerned about is all the blood tests that are needed. Any advice on treatment start up and how it worked? I’ve not had much information so far.

  • stickywicket
    stickywicket Member Posts: 27,687

    Your blood tests came back negative as PsA is sero-negative whereas most autoimmune forms of arthritis are sero-positive. Unfortunately, not all GPs are aware that you can have an inflammatory form of arthritis despite their negative bloods.

    Anyway, you're there now and that's good. As for DMARDS (Disease Modifying Anti Rheumatic Drugs 0 I'm afraid they all need blood tests. They are powerful meds to treat powerful diseases and they can occasionally cause unwanted side effects. The blood tests pick up on potential problems before they become actual ones. Most of us don't get them though. To startw ith the tests are frequent - about every two weeks, I think - but, once it's clear the disease is stabilising and with no unwanted problems with the meds, then the bloods will be reduced. I've been on three monthly for years.

    It's so long since I started treatment I can't really remember how things were. But I do hope you get sorted quickly.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • LauraL
    LauraL Member Posts: 4

    Thank you for your reply. Blood tests are fine. I’m a regular donor and fine with needles. Im just looking forward to getting symptoms under control and being able to get back to the sports I enjoy. Thankful for all the information on this community. Im sure I’ll be posting more questions once I get treatment underway.

  • bernie
    bernie Member Posts: 2

    im new to psoriatic arthritus aswell , im on methotreate injections. i was wondering if anyone else finds that the sun sometimes makes me hurt as much as the cold does. somedays its an effort even to get started