Recent PsA diagnosis

Hi, I'm Mark.

I've recently been diagnosed with Psoriatic Arthritis, and to be honest I'm struggling to get my head around it all. I used to be very fit, largely cycling, and am employed as a primary school teacher, although I'm currently off work whilst I start treatment and manage flare ups and side effects. Oh, and I'm 37.

Has anyone managed to get back to their previous lifestyle with PsA and medication? It currently seems like a long, dark tunnel with no real end in sight, which is pretty demoralising. Trying to keep positive but it's hard.

Thanks

Comments

  • Tom
    Tom Moderator Posts: 450

    Welcome to the forum, @mholmes02.

    You report a recent diagnosis of Psoriatic Arthritis which has come as a justifiable shock to you. Here are some links to information to be found on our website:


    I wish you all the best. Let us know how you get on.

    Tom

  • CCM
    CCM Member Posts: 82

    It is a shock to be given a diagnosis like that. I was given mine at 34, but here I am at 73 still going (relatively) strong. I have found that it is better to rejoice in the things that you can do, rather than regret those that you cannot.

    Don't forget that any medication you are given, may take time to work and don't be afraid to ask for help.

  • I was diagnosed December 2020! I’m still in the tunnel atm !!

    I have given my job up at the moment (self employed hairdresser) pandemic diagnosis new medication ect ect !

    im Just concentrating on getting better atm I don’t think I’ll ever be doing what I did previously but I will eventually find a new way to enjoy things when I get out of this dark tunnel !!

    lots of lovely people on here very supportive!! I’m 44 years old previously very active !!

  • mholmes02
    mholmes02 Member Posts: 4

    Thanks for the responses. It's tough but I know I'll come through the other side. Just hopeful that the drugs kick in and the aches and pains subside soon!

  • DobbieD
    DobbieD Member Posts: 3

    Hi Mark,

    I'm also very recently diagnosed with it (this year). It is a lot to get your head around... especially in the middle of pandemic when life's already dramatically changed for everyone!

    My advice is to research it...diet, exercise, medication, sleep, etc, etc...but only for a short time whenever you are feeling ready to read about it.

    Ask your Doc/Rheumatologist to see a physio therapist if you haven't already, they'll be able to advise you best on exercise for you, you can also ask see an occupational therapist if you need advice on changing the way that you do day to day tasks - I don't yet (occupational), so haven't done that one.

    And make sure to write down questions for your next appointment (I get brain fog), and if you have any that you feel can't wait, do reach out to your doctor before then, they can always give you a call back.

    Personally, I've improved my diet (wasn't bad anyway - but even less salt, less sugar, more nuts, seeds, berries, fish, etc), stopped smoking (it was only ever 1-2 a day), cut down from a bottle of wine a week to two glasses (every little helps!) and am doing my best to do the exercises the physio gave me to do daily...I'm not perfect and forgive myself if I miss it occasionally...!

    I'm on Methotrexate (plus folic acid of course), I have had nausea (you can get medication for that too) and do get a bit of brain fog the day or two after a dose. I should add that you're not really supposed to have alcohol while on Methotrexate, but my Rheumatologist knows.

    I split my dose into two on the day - half in the am and half in the pm I'd read it helps, so checked with my Rheumatologist and he was fine with me doing that. A lot of people said they'd had upset stomachs (both ends) and I wanted to avoid that and splitting the dose seemed to help most people with that.

    I have no idea if any of this will be helpful to you, but knowing that you're not the only one on this journey does provide some reassurance/comfort of a sort - well to me at least!

    Enjoy the sunshine!

  • Chris_R
    Chris_R Moderator Posts: 547
    edited 25. Jun 2021, 19:09

    Hi@DobbieD

    Welcome to the online community ,its great you have found us and connected already by posting and giving your experiences is excellent, you seem to be well informed of your form of arthritis and have already changed a lot in your life to help with improvement of Psoriatic Arthritis also managing your medication.Research is up to the individual how they want to advance in finding information about their particular arthritis, and you seem to be very keen which is also great.

    I have a few links that may help you with exercise and pain managment.

    Our Let’s Move with Leon programme launches to rave reviews (versusarthritis.org)

    Managing your pain | Treatments and self-help (versusarthritis.org)

    Hope these links help in some way.Enjoy chatting on our forums and getting more information from others.Please keep in touch and tell us how you are getting on.

    All the Best Christine

  • DobbieD
    DobbieD Member Posts: 3

    Hi @Chris_R,

    My head’s been all over the place since I was diagnosed (had a few I don’t want to do anything or see anyone days) - no one I know had ever heard of PsA!

    Thanks for the links and I’m glad to have the forum/community to lean on and learn from.

  • bosh
    bosh Member Posts: 1,774

    Hi @mholmes02 , nice to meet you, I too have PsA, I was diagnosed about a year ago and am in my forties. It is v shocking to get the diagnosis, I agree, but with physio and meds I can walk without a stick and although I can’t walk the distances I used to (although I’ve never been athletic) and although the methotrexate has strong side effects and I don’t like taking it, things are better than they used to be.

  • mholmes02
    mholmes02 Member Posts: 4

    Thanks @DobbieD and @bosh that’s really useful. I’m on Sulfasalazine and have worked through the initial side effects. Just waiting for them to kick in really, especially now my corticosteroid injection has well and truly worn off. It’s just so very up and down, it’s as much a mental battle as a physical one.

    Diet is a good shout and I’ve been trying to eat as well as I can. Is there anything specific you can recommend or somewhere I can research further? I’ve mostly cut out alcohol - non-alcoholic stuff is so much better than it used to be!

    I’ve also started using the Wim Hof Method of breathing, stretching and cold water immersion. It seems to help and feels good to feel as if I’m doing something positive. Everything just seems so much out of my control!

  • aecvelo
    aecvelo Member Posts: 2

    Hi Mark,

    I'm recently diagnosed as well. It is hard to wrap my head around. Because of the pandemic a lot of in person resources are closed I feel a bit lost. I am also at the point where my meds haven't really started working and it seems like a long road with more side effects than benefits, but I am still taking them. I started on NASID and it didn't really work, so we kicked it up to methotrexate and Adalimumab. I don't like needles, so injecting myself has been a real ride, but supper proud that I am able to do it.

    Like you I am pretty active (cyclist, mountain climber) and my job requires me to use my hands a lot which has been a bit of a challenge. I hope like you I get my life back, but for right now I am just taking it one day at a time.

    Good luck with everything.

  • chrisb
    chrisb Moderator Posts: 494

    Hi @aecvelo, welcome to the Versus Arthritis forum.

    I see that you've got involved straight away in this discussion, which is great.

    I hope you find joining the forum beneficial.

    Best Wishes

    ChrisB (Moderator)

  • DobbieD
    DobbieD Member Posts: 3

    Hi @mholmes02 - and all 😁

    Here are some websites I've read a lot on (as well as this one) and signed up to newsletters...

    https://psoriatic-arthritis.com/ and https://www.arthritis.org/search/results?query=psoriatic%20arthritis

    Also, re: diet, there are anti-inflammatory diets ...https://www.medicalnewstoday.com/articles/320233 - basically, cut out processed and fast foods, red meat, white-bread/pasta/rice, alcohol, sugar, salt - everything we all already know is bad for us 😁 https://www.arthritis.org/health-wellness/healthy-living/nutrition/anti-inflammatory/anti-inflammatory-diet

    Some people say cutting out or down on gluten can help too...I'm not ready to try that yet...I've made so many changes already, I want to see how they go first!

    You'll also no doubt pick up on a group of vegetables called nightshades (white potatoes, aubergines, tomatoes, peppers...) that some articles say to avoid if you have inflammatory arthritis, however it doesn't appear to be backed up by science...and l love tomatoes, peppers and potatoes!

    On the plus side...dark chocolate with a minimum of 70% cocoa solids and red wine (particularly malbec and pinot noir) are shown to have anti-inflammatory properties (in moderation) too!

  • bosh
    bosh Member Posts: 1,774

    Thanks @mholmes02 , it is definitely a mental battle too, I agree, I’ve been told that turmeric is good for arthritis, I try and buy turmeric tea bags when I can, also eating turmeric-rich foods, like homemade curries, for example, could help.

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