Hi all

daniivca
daniivca Member Posts: 30
edited 2. Feb 2016, 10:05 in Say Hello Archive
Hi there I'm a 25 year old female who was eventually diagnosed with palindromic Rheumtism after 24 years! I'd love to meet new people who possibly also have this and have any tips on how I can help myself when in flare ups. Also I don't know if this is on the correct part but I'd love to one day start a family, I was just wondering if anyone has any experience on how pregnancy affected their symptoms of their arthritis as I don't think my other half could cope with a grumpy hormonal painful women! Thanks in advance :D

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums from the moderation team Daniivca.

    As moderators we are here to help with any problems you may have using the message boards so feel free to send us a personal message if you need to.

    We have lots of lovely members using the forums who have several different types of arthritis. Between them there is a wide range of experiences and I am sure you will receive lots of support and advice.

    Please do join in wherever you like, you will be made very welcome.
    I look forward to seeing you posting on the boards.

    Best wishes


    Moderator AC
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello and welcome from me too daniivca. You've had palindromic rheumatism since you were 12 months old :o Blimey, that's young. How difficult both for you and your parents!

    We don't actually get many people on here with your disease but we all face similar problems so posting any questions you have on the Living With Arthritis forum will probably get you some relevant replies.

    I guess pregnancy will depend on which meds you take. Most DMARDS can't be taken in pregnancy or while trying to conceive but I believe palindromic rheumatism is often just treated with NSAIDS which I think are considered OK these days (but don't take my word for it). I have Stills Disease (a sort of junior form of RA). It cleared up during my first pregnancy and was a nightmare during my second. I flared badly for months after both babies were born. Was I grumpy? Naturally :lol: However, Mr SW had long been used to living with a grumpy woman who was constantly in pain. He's still here so I must have got something right :wink:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • daniivca
    daniivca Member Posts: 30
    edited 30. Nov -1, 00:00
    They think it started when I was 6 months old but they've only recently diagnosed me because they wouldn't at first and it has been difficult and I'm on Celebrex which is the only NSAID that actually works for me and relieves the pain a little bit and I'm on hydroxychlorquine (I can't spell it properly!) which I think the consultant said was fine but it's the Celebrex that I've been told I can't take, I'm not planning on conceiving just yet but maybe in the next year or so I just don't know if I can manage the pain and I'm worried that I may pass on arthritis as a lot of my family have it and I'd feel awful for passing it on knowing how much it has affected me
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I am 56 and have two kinds of arthritis (psoriatic and osteo) but made the decision, aged 16, not to have children because I was told by a GP that something would be passed on, either to them or the next generation. I was fortunate in that medical knowledge was then increasing about the reasons why these things 'run' in families (although it seems very obvious now!) and I don't regret my decision for one moment.

    There is, however, a plus on your side: there are now the meds to help control these issues. DD

    PS I loved Celebrex because it 'worked' but was taken off it due to the cost to my GPs surgery. There are times when we cannot win. :wink:
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hydroxychloroquine is a mild DMARD. I take it along with methotrexate. Sulphasalazine is another DMARD. I know that meth can't be taken pre, or during, pregnancy but your rheumatologist is your best guide for the others. Some move on to steroids but they can be hard to get off again. Back in the '70s I was only allowed soluble aspirin and, after that, I made sure there was no third pregnancy :lol:

    And then there's the heavy-duty, never-ending work of motherhood. I doubt that any of us who have done it regret it but it is tough. You are being very wise in thinking ahead. Before my first pregnancy I did ask about a genetic factor but the thinking back then was that there wasn't one.

    I'm intrigued as to what your symptoms were at 6 months or, to be more precise, how anyone could tell with a young baby. Parents of toddlers worry because their children haven't the vocabulary to communicate pain properly and they are afraid of missing signs and symptoms. With a baby that must be even harder. Your poor parents must have been very worried about you.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • daniivca
    daniivca Member Posts: 30
    edited 30. Nov -1, 00:00
    It was only diagnosed properly last year it's harder for them to diagnose as well because my pain has always mobed around, they just think it started when I was 6 months old because I had osteomyelitis in my ring finger and ever since then is when I've had problems and I would love to start a family one day just hope that my flare up stays at bay for 9 months I can cope after that with the pain as I know I could go back on my painkillers if I choose to I just know that some people the symptoms settle down due to the hormones but thanks for all your help :D