Palindromic Arthritis

SaraD
SaraD Member Posts: 31
edited 28. Sep 2013, 08:09 in Living with Arthritis archive
Hi I'm new to this site. I have palindronic arthritis and I'm having a flare up despite being on Infliximab. Is there anyone else on the site with Palindromic Arthritis. As it's rare I'm struggling with funding much out. I've been having an attack since Saturday and it's been all over my body since then. My hands, shoulder, knees and even my neck. I had a steriod injection on Tuesday evening. Unfortunately this has only given me a days relief. I'm now having an attack in my thumbs in my hip!

Comments

  • stickywicket
    stickywicket Member Posts: 26,697
    edited 30. Nov -1, 00:00
    Hello Sara and welcome to the forum. I have RA, not palindromic arthritis but, with all of us 'auto-immuners', if the meds aren't working I think we have to get in touch with our rheumatology helplines. The GP can prescribe pain relief but clearly the imfliximab isn't working well enough for you.
  • SaraD
    SaraD Member Posts: 31
    edited 30. Nov -1, 00:00
    Hello Sara and welcome to the forum. I have RA, not palindromic arthritis but, with all of us 'auto-immuners', if the meds aren't working I think we have to get in touch with our rheumatology helplines. The GP can prescribe pain relief but clearly the imfliximab isn't working well enough for you.
    Hi thanks for your reply. Painkillers don't seem to help at all. They take the edge off but the pain doesn't go away.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It is possible to flare whilst on the meds. How long have you been taking infliximab? I ask because drugs can lost their effectiveness over time. As Sticky said you would be best to contact your rheumatology department for their advice and I hope they can help. Please let us know how you get on and I wish you well. DD
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    Hi and welcome Sara x

    I can't help you I'm afraid, I hadn't heard of palindromic arthritis until your post! Just wanted to say I hope you get some relief soon x
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    I started with Palindromic arthritis, which eventually morphed into Rheumatoid Arthritis. As far as I can see the only real difference is that rather than get pain in 1 joint at a time I now get it mostly in matching pairs :( .

    I take a combination of 3 DMARD's (methotrexate, hydroxy chloroquine sulphate and sulfasalazine) and still have flares, in fact I'm currently struggling with sore wrists, ankles, feet and shoulders- guessing that I need to up my methotrexate dose and waiting for next rheumy appointment which I'm hoping will be in next few weeks!

    I think we all get painful flares whatever we take, but hopefully less often/less severe/less damaging to our joints.

    When I was diagnosed with Palindromic my GP had to look it up in a medical book because they had never heard of it!

    Deb x
  • SaraD
    SaraD Member Posts: 31
    edited 30. Nov -1, 00:00
    Hi all

    Thanks for all your comments so far. Palindromic arthritis is a very rare form of arthritis which is why not many will have heard of it. Debs you may find it interesting to know there is a National Palindromic Society they have a website and also a forum. I think the main difference is that it travels all around your body when you are having an attack. It's been in my hands, knees, arms, hip and is now in my teeth and jaw. Yes my teeth!!. The main thing for me is trying to manage the pain as painkillers dont seem to work! Also how low it makes you feel. I've been off work all week and hardly seen anyone. People (friends) dont seem to realise how painful it is. Its good to be on this forum and find out how other people cope.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I think that the term 'pain killer' is a mis-nomer because surely something which has been killed has gone for ever. The best that the pain relief methods do is dull the sharper edges, hence the forum term 'pain dullers'. The stronger the relief the more you are removed from the pain rather than vice versa - I prefer to stay reasonably alert so I can function as best as possible. I have recently had to give up work and that has made a difference in that I have more time to do the basics, I can rest more and, although pain still a constant feature of life, I am better able to cope. DD
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    I think we all find our own ways of coping- as DD said taking time and pacing chores really helps. I retired early at Easter(age 55), but previous to that I reduced my hours to part time to deal with the fatigue element of RA. Also you learn what level of pain dullers get you to a point where you can function, although it seldom means pain free :( .

    Now I know that the day after my methotrexate I usually feel yuk (hubby calls it "melancholy Tuesday") so I try not to plan anything so that I can rest, sleep or just generally pursue my hermit tendencies so that no one else has to deal with my moaning!

    I have also learned to ask for help when I am in pain- particularly if it's a task that I know will exacerbate sore joints.

    Hope you find a coping space soon, and keep asking questions- others on here are always happy to share and support.

    Deb
  • stickywicket
    stickywicket Member Posts: 26,697
    edited 30. Nov -1, 00:00
    SaraD wrote:
    I think the main difference is that it travels all around your body when you are having an attack. .

    That doesn't sound any different to my RA, Sara. I'm not sure the distinctions matter much anyway insofar as we all need the immuno-suppressants plus pain relief. As DD has pointed out, many of us feel the term painkillers should be banned under the Trades' Descriptions Act :wink: OK if you have a headache, maybe but not a very realistic ambition for those of us with arthritis.

    My own pain-managing techniques consist of denial :roll: , exercises, distraction, alternating between resting and moving, finding the right tool for the job (ie not causing unnecessary pain by overusing a joint) and, yes, when necessary, paindullers.
    dibdab wrote:
    Now I know that the day after my methotrexate I usually feel yuk (hubby calls it "melancholy Tuesday")

    Deb, I'm usually OK but, when I get a 'meth day' , it's Floppy Friday :lol:

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