Hi

lolajane
lolajane Member Posts: 3
edited 11. May 2017, 12:03 in Say Hello Archive
Hi I'm new and seeking advice and chat about Psoriatic Arthritis. :D

Comments

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

    Welcome to the forum, I am sure you will find support, advice, light relief and friendship here. There is at least one or more people on here with psoriatic arthritis and I am sure our questions can be answered,

    It would be better to go to the "Living with Arthritis" section as this is the page most of the people on here use. If you could enlarge on what you have put in this post, saying a little about your arthritis and yourself that would be good.

    On Arthritis Care's website, which you can get to from this site, there is a Living with Arthritis section which could be useful to you. The website is: www.arthritiscare.org.uk

    If you need someone to talk to about your arthritis, there is the Arthritis Care helpline, which is open from10am to 4pm and is manned by a lovely group of people. The phone no is: 0808 800 4050. They are unable to answer medical questions, but they can listen to you and make suggestions, give you some idea and help generally.

    I am one of the moderation team and we all have one or more of the arthritis "hanger ons" or look after family with the same.

    Best wishes
    ChrisK
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hi, I have psoriatic (PsA) but with very little of the skin trouble. I am twenty years in, I began in April 1997 when I was 37. I doubt that I can advise but if I can help I gladly will - what would you like to know?

    I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lolajane
    lolajane Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi ,
    Thank you for the warm welcome,
    Hi, My name is Lorna, I have The above, Psoriatic arthritis.
    I am (just turned 46) and have only been diagnosed 4 years ago with this condition.
    I had juvenile arthritis and lived with this as long as I can remember, but this is a whole new kettle of fish so to speak.
    I suffer (again as long as I can remember) with psoriasis, but it was never as bad as it was 4 years ago, it had always contained to my scalp and back, but 4 years ago I had it head to toe, and one morning after countless visits to my Dr about joint pain and my skin, I awoke, but could hardly lift my head off the pillow, it felt like I had the flu, without the cold and temperature part, just all aching joints and muscles, a bit like doing a heavy session at the gym…..yes I know what that feels like haha, anyway again I go to my GP and this time he said I’ll send you to the Dermatologist and Rheumatology! I was a little confused, I had been complaining about my skin and its complete irritation for months by this point and NOW he decides to send me to Dermatology but why Rheumatology? It was my muscles and tendons that were aching and stiff….. so I got the appointment October 2013.
    I had preliminary weight, height and medical records taken on my arrival, and when the nurse asked if anyone else had arthritis or psoriasis in the family I duly informed that that yes my dad was prone to skin conditions and that I must take after him,…..well that’s what we always thought anyway, but on further questioning, I mentioned my mum has crones disease, which I didn’t know was an autoimmune disease and then fund out so is what I have Psoriatic arthritis, so maybe it was genetic?

    When I saw the Dr. there was a student in the room, the Rheumatologist was explain to her that this was the perfect presentation and she seemed elated that she could demonstrate to the student about it in the flesh so to speak, while I was in the dark still….. I hadn’t a clue what that was at that point (nor now really) she pointed out my nails being pitted and scored examined my patches of skin and my knee which was particularly inflamed, offered me a steroid injection and gave me a booklet about the condition., explaining about a medication called Methotrexate and how it may also help my skin, so I was up for that. She then explained what Psoriatic arthritis was and that this is what I had and not to worry, it could be controlled….I felt overwhelmed and still a little confused as I was unsure why my GP had referred me but now this!

    The injection helped my knee and I started the medication and my skin was already clearing up, things were looking good, that was October 2013 and things improved (slowly) from then, but end of last year, beginning of this, my psoriasis has been getting more active again, my scalp is dry and flaky and I have patches at my groin Inverted psoriasis I now know! (not great for a relationship as well as the pain some days/weeks/months) also have other patches that cause problems and new issues to deal with, so I didn’t realise that having this would lead to other problems.

    I seem to have dactylitis and the tendons and muscles are always affected on a flare up, I had a sore hip/leg….and also my neck was really tight and soar and causing a headache and I saw the nurse (rheumatology) and she put in appointments for Occupational therapy, physiotherapy & podiatry and they all gave me exercises to do, but after things with my leg were getting better I had a sore toe (dactylitis) I hadn’t had this before and went to the JP as my whole foot was swelling up and painful, she didn’t know what it was although I had explained I thought it may have something to do with the Psoriatic arthritis, she didn’t think so and gave me antibiotics as she thought it may be an infection.
    I had an appointment (follow up) for physiotherapy and he took one look ad said it needs an injection, that definitely is dactylitis and now I had to wait till I had completed the antibiotics before I could get the injection arghhhhh!

    Fed up and in so much pain needed to find others with these issues and have joined facebook pages and with another UK member we have started up our own Facebook group as we couldn't find one for only NHS (UK) patients.
    I have learned a lot over the past week about this condition and can't believe some of the stories told ....my thoughts are will every last one of you!
    SO I vented and this is my suggestion....think I'll start a blog about it too!!!
  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi lolajane
    wow you have had one hell of a journey, and I hope things start to settle down for you now. A blog sounds like a great idea, please let us know if you do set one up as we can share it on our Facebook page for you.
    I hope the rheumatologist gets your pain levels under control soon. It would certainly be worth letting them know that you are still struggling as this may mean you need to change something in you present medicine regime.
    I am delighted that you have found our online community and please keep us updated with how you are getting on
    Best Wishes
    Sharon
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello and welcome :D

    My 'arthritis journey' was very different from yours. I was diagnosed, aged 15, with Stills Disease but, even back then in the '60s, they kept wondering if it might really be PsA because my Mum had very mild psoriasis. It wasn't and isn't but the question always cropped up.

    Which meds were you on as a child? I ask because methotrexate is the usual starting med, especially for children, yet you seem to have only fairly recently been put on it.

    Does your rheumatologist have anything to say about your current problems? How are your blood test results? It must all be very frustrating.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran