Palindromic rheumatism

Clackyshoes
Clackyshoes Member Posts: 3
edited 12. Dec 2016, 06:39 in Living with Arthritis archive
Hello all, I have very recently been diagnosed with Palindronic rheumatism which I am told is very rare. Is there anyone out there who has this? I'm feeling very alone at the moment and it would be comforting to know if there is someone who understands this condition. I look forward to hearing anything which can help, especially about what sort of experiences people have had with taking Dmards for this condition.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Welcome Clackyshoes to the forums from the Moderating Team :)

    I am sorry to hear about your diagnosis, but I am aware of people on here who have been diagnosed with Palindromic Rheumatism. Hopefully someone will be along to talk to you soon.

    In the meantime I hope this link helps:

    https://www.arthritiscare.org.uk/what-is-arthritis/types-of-arthritis/104-palindromic-rheumatism

    and this should give you a list of all discussions on her which concern PR:

    http://tinyurl.com/h52we6r

    Please do join in wherever you like you will be more than welcomed. The members are very friendly and helpful.

    If you have problems using the boards feel free to send us a personal message

    Best wishes

    Ellen
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi there, please don't feel alone....there are lots of us arthritic types out here to listen and sympathise.

    I have rheumatoid arthritis, but was originally diagnosed around 10 years ago with Palindromic Rheumatism. My understanding is that it's part of the inflammatory arthritis family, but rather than matching pairs of sore joints it's single joints that inflame, ache, swell etc and migrates around the body....and that was my experience! I eventually went on to develop seronegative RA.....which loosely means I have RA but none of the blood markers to identify it. Having said that, it doesn't necessarily apply that every one with PR develops RA.

    In terms of DMARD's I started with Plaquinell, added in Sulphasalazine, and eventually Methotrexate........all act by suppressing the immune response that triggers the pain and swelling. It takes several weeks for the drugs to kick in and begin to calm down the inflammation. If one medication doesn't work for you there are lots out there to work through, and many of us take a combination of meds for the greatest benefit.

    When you have questions write them down and ask your rheumatology team......if it feels urgent ring the helpline at your hospital........they generally are very knowledgeable and helpful.

    I've probably missed lots out.......keep asking and we'll do our best to share our experiences, but everyone's disease is different and we all respond differently to different drugs.

    I'd encourage you to be open with your nearest and dearest about how your feeling and what effects your disease has on your activities, and don't be ashamed to ask for help or say if something is not do-able today....by tomorrow you may be feeling less sore/weary and more able to tackle stuff......above all when you feel like your disease is in full flight try to pace yourself, everything doesn't have to be achieved at once :wink:

    It's a lot to take on board when you get a diagnosis of a disease that won't just go away with a week of antibiotics, but it's not the end of the world and you will work out how best to deal with your bad days.

    Having read this back it's a bit of a ramble, sorry! I think what I was trying to say was you're not alone, and it's not the end of the world........ :autumn-sun:

    Deb xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    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 in my 20th year of living with an auto-immune inflammatory arthritis (in my case psoriatic) and have taken many DMARDs over the years. There was some delay in my problem being recognised for what it was so I didn't begin the meds as early as I could have or should, so to be honest I have not found them that effective but I understand now that my disease is well-controlled and that is the important thing. Tablet methotrexate gave me a rash so now I take it via injection, the only occasional trouble I have with that is maybe I feel extra tired the day after I do it. Leflunomide (which I think I took in 2004 - 05) gave me cracking headaches and cyclosporin (which followed) made me hairy (which didn't bother me one bit) but none of them really got to grips with tackling the arthritis. I began sulph back in 2002 but have recently stopped it because I felt it wasn't dong anything.

    I hope you begin some medication soon, they can take between two to twelve weeks to get into our systems and start working on dampening down the immune system: I don't know your age but if you haven't had a 'flu jab I recommend that you do as DMARDs leave us more prone to infections and you will qualify for a free one via your GPs surgery. I wish you well, please let us know how you get on. DD
  • frogmorton
    frogmorton Member Posts: 28,059
    edited 30. Nov -1, 00:00
    Welcome, welcome Clackyshoes :)

    One of my 'almost' diagnoses was PA too :)

    I thought the theory was that the joints kick off in one area then maybe another increasing in pain until they reverse the process back down. Like a palindrome. Same forwards as back.

    Ask any questions you need to we are a great source of support and help on here ;) Not that I'm bragging!!

    Love

    Toni xxx
  • Clackyshoes
    Clackyshoes Member Posts: 3
    edited 30. Nov -1, 00:00
    A big thank you to everyone who has replied to my 1st post about having PR. it is very comforting and helpful to know there are other people out there that understand. Best wishes Clackyshoes
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Clackyshoes,
    you are right it is comforting to know that other people understand how you feel, that is one of the joys of the forum, it's also a place where you can be honest about how you're feeling and have a good moan when you need to among people who understand the difficulty of living with arthritis. Please feel free to ask as many questions as you like, as you can see we have lots of knowledgeable members who are really good at giving you their experiences and advice, we also have an amazing helpline team that you can phone free on 0808 800 4050, most of our helpline team have arthritis themselves will look after somebody who has arthritis so they are also very supportive and understanding and extremely skilled at listening to people.

    Please keep us up-to-date with how you get on, it's always good to know how you doing and feel free to join in on any of the other conversations within the forums, we also have a chit chat forum if you just want to talk about life in general.
    Best Wishes
    Sharon
  • joon51
    joon51 Member Posts: 221
    edited 30. Nov -1, 00:00
    Hello Clackyshoes I too have just been told by my rheumy that I also have PR. I first started in 2010 and they diagnosed RA I saw a different rheumy this time she went through my arthritis history I also have been taking photos each time I get any swelling and she diagnosed the PR. I seem to be suffering more with my hands and feet at the mo my feet feel like I'm walking on pebbles and my hands are swelling up at least once a week.
    I am going to be starting MTX very soon I have been on it before.
    How are you what meds are they going to put you on? Xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello joon51, long time no see! It's good to hear from you again and I hope you do better with the meth - when do you start? DD
  • joon51
    joon51 Member Posts: 221
    edited 30. Nov -1, 00:00
    Hi DD, I am waiting to here from my rheumy nurse I am hoping it will be in the next week I saw a consultant rheumatologist last Tuesday. Yes it's been quite a while hope your keeping as well as can be expected x
  • couldtryharder
    couldtryharder Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi everyone,

    Like Clackyshoes I too have just been diagnosed with Palindromic rheumatism. I have been trying to find out a bit more about this condition and from reading the forums I get the impression I have been very fortunate to be diagnosed so early.
    I am 36 and my job is very physical so when I suffered shoulder pain last year I went to my Gp. I have had four incidents of pain in my shoulders (both sides) and pain in the wrist in a year. Each time the symptoms vanished within 48 hours. The first Gp couldn't understand what I was describing (and I had no idea what it was, I just need to be able to get through the pain so I could get a good nights sleep) but luckily the second Gp I saw when my wrist was bad sent me for blood tests. I have no family history of arthritis but my blood tests came back with a high rheumatoid factor so I was referred to the rheumatology department where I was given my diagnosis and told I should start on Hydroxychloroquine.
    I haven't started any medication yet and haven't suffered any other symptoms that I'm aware of. I don't really know what aches and pains to ascribe to this condition and have concerns I'll start blaming everything on PR.
    I'm not sure what to expect and whether this is something that is degenerative, I know it can develop into RA and I do have the markers for that.
    Sorry I can't give you any insights Clackyshoes but perhaps we can compare notes as we go.
    Sorry to hear how much pain so many of you have to go through, I feel a bit of a fraud.
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi there Couldtryharder,

    I'm not sure your name is accurate, it seems to me you have tried - and indeed succeeded! You aren't a fraud, we cater here for arthritis in any number of joints, you definitely DO belong here and hopefully you and Clackyshoes can help each other with any specifics and of course we are here for rest, relaxation and support :P

    If you have any queries we have a helpline team here at Arthritis Care, call 0808 8004050 or post on the helplines thread, they are up to date and experienced in all aspects of arthritis

    Take care
    Yvonne
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hi there and welcome 'couldtryharder'. I, too, think your username is inappropriate as you've tried very hard but, seeing it, I did wonder if you'd been looking at my old school reports :lol:

    As you have discovered, any form of inflammatory arthritis can be hard to diagnose and even harder to diagnose accurately. Fortunately, this doesn't matter too much as the meds are much the same.

    None of us really knows what to expect. Mine is RA but, though two people may have exactly the same diagnosis, the progression of their diseases may vary enormously.

    Hydroxy is a mild DMARD. I take it alongside methotrexate. You may, or may not, find other meds added in as you go on. Your diagnosis may change. But, that apart, we are all in the same arthritic boat and our difficulties are very similar so, whether or not 'clackyshoes' sees this, please feel free to join the rest of us.
  • couldtryharder
    couldtryharder Member Posts: 2
    edited 30. Nov -1, 00:00
    Thanks for the warm welcome,

    Indeed my name is inspired from school reports and something I use for several things. Perhaps it does feel a bit negative in this context,
    maybe I'll come up with something more appropriate for this forum in the future. I'm finding this forum very useful already, so glad I found it.

    Thanks for all your information.
    x
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I'd stick with the current username. Changing it might cause log in difficulties. Don't worry about it possibly sounding negative. We're all negative at times :sick-in-bed:

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