Pallindromic Rheumatism

Rosebay
Rosebay Member Posts: 17
edited 25. Feb 2018, 11:54 in Living with Arthritis archive
Does anyone have this? I've been researching it, and there is very little information about it. I'd love to hear from anyone, what their symptoms were, how it got diagnosed, and also what treatments worked. Most importantly, how do you manage the severe inflammatory pain, thanks

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi again Rosebay.

    The Arthritis Care web site has two good pages on Palindromic Rheumatism:

    "Palindromic rheumatism describes a form of joint pain that comes and goes in cycles or episodes, starting in one joint, perhaps moving to others before going away."

    More here: https://www.arthritiscare.org.uk/do-i-have-arthritis/a-z-of-types/104-palindromic-rheumatism

    Plus a factsheet that you can download, includes information on symptoms, diagnosis and treatment:

    https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/449-palindromic-rheumatism


    All best wishes
    Brynmor
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    More here from ARUK, Rosebayhttps://www.arthritisresearchuk.org/arthritis-information/conditions/palindromic-rheumatism.aspx

    Also, if you enter the term in the search engine above, past threads will come up.

    I'm RA and OA myself so can't help personally.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Rosebay
    Rosebay Member Posts: 17
    edited 30. Nov -1, 00:00
    thanks for replying, I already looked up those sites. Really wanting to connect with someone who has it. I get that it's rare, so probably a long shot.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Palindromic Rheumatism is one of those things that can come and go and go and so do those who have it :wink: I've done a search and the latest person on here with it was JenniferB27. After a few more posts you'll be able to PM her and, with luck, she'll pick it up and reply.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Rosebay
    Rosebay Member Posts: 17
    edited 30. Nov -1, 00:00
    thanks for helping, I really appreciate your help and time.
  • joon51
    joon51 Member Posts: 221
    edited 30. Nov -1, 00:00
    Hi Rosebay I was diagnosed just over a year ago at first they thought it was rheumatoid arthritis it took nearly 7 years to be told it was palindromic, they diagnosed it after I took photos of my hands when I was having flares which was every week. I’m on 25mg methotrexate sub-cut once a week I still get minor flares but I find I can cope with them.

    Joon
  • Rosebay
    Rosebay Member Posts: 17
    edited 30. Nov -1, 00:00
    Joon51, thank you for replying. That's really interesting about the length of time to diagnosis. The reason I'm asking is because I think I might have that, and not RA. I never had any symptoms of RA, still don't. It was diagnosed from antiCCP positive and bone biopsy I had for another problem. I have a few episodes of severe pain yearly, which GP thought was OA in hips and occasionally in shoulders which they said was frozenshoulder because I couldn't lift my arms. Most of the time, there's nothing wrong with me and I feel perfectly well. Xrays show normal joints (except mod. OA in hips), MRI showed the same. Inflammatory markers are normal (always) even when I was with doctor with bright red, swollen and extremely painful joints. Today, I'm feeling great with no joint pain anywhere. When the severe pain comes on, it happens within 2 hours and it's brutal. I'm on Sulfa, and Consultant wants to start me on Hydroxychloriquine. I would love to know if you had any similarities, thank you
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Diagnoses are good but are not the full story. The fact is that whatever form our inflammatory arthritis takes, the meds are broadly the same. Joon51 is on a high whack of methotrexate for her palindromic rheumatism. I take exactly the same med, plus hydroxychloroquine, for my RA. Most people with RA are offered methotrexate first.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Rosebay,

    I was diagnosed with Palindromic Rheumatism around 13 years ago, having had symptoms on and off for more than 2 years, red swollen and incredibly painful wrists, fingers and feet. I had 2 negative tests for RA. I began with hydroxyl chloroquine, they soon added in sulphasalazine then methotrexate. Eventually my sporadic moving joint pain became swelling and pain more regularly on both sides of the body, and though I still don'thave the rheumatoid factor my diagnosis became sero-negative RA. The meds are the same, the joints continue to flare periodically, for me the biggest difference between the two was the incredible fatigue which can literally flatten me so that my only option is to rest as and when required.

    Dealing with the pain for me comes with a mixture of anti-inflammatories and paracetemol or cocodamol depending on how bad the pain is and what I'm trying to achieve. I find hot packs really soothing-for me ice increases pain-it's really personal I think which works for you. My rheumatologist referred me to a specialist rheumatology occupational therapist who gave me lots of good advice about protecting joints, kinds of gadgets and adaptions that might help, and gave me a variety of gloves and splints to support my hands/wrists/fingers when they are flaring, I also saw an orthotist who gave me custom made orthotics for my shoes as I have lots of foot and ankle problems arising from the RA.

    I hope you get the advise and support you need, it may be worth asking the rheumy team about an OT referral for advice.

    Deb x
  • Rosebay
    Rosebay Member Posts: 17
    edited 30. Nov -1, 00:00
    thanks Dibdab, that's really helpful. I'm getting more convinced that I've got the same. I've seen Rheum OT who were wonderful. She gave me splints for my wrists for night time and they've really helped (last flare of wrists lasted 4 weeks and just gone now). But again, there is no joint damage at all. I've never had pain in my hands or feet, and have no joint deformity anywhere. GP has seen the red, swollen joints, consultant saw red, swollen knees combined with hip pain. Problem is usually by the time I get to see them, it's settled down. Yes, fatigue is the biggest issue.
    The pain meds Cocodamol 30/500 combined with Voltarol 75mg didn't begin to touch it. When it settles down, I am pain free and move normally. I asked Consultant if I could have oral steroids to keep at home for one of these severe attacks and he's really happy to give me them.
    thanks for advice, so kind of you
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    It might be useful to take photos of swollen joints on your phone so that your rheumy can see them when you go.
    As for pain relief- I think at best they dull pain not move it completely. I forgot to say that as I have pain mostly all the time to a greater or lesser degree I also have pain patches from the GP which I wear 24/7, then top up with other things as needed -usually cocodamol at bed time because inevitably the pain and stiffness wake me up then I can't get back to sleep. I also find that when joints are particularly gruesome a warm shower helps to soothe and loosen things a little.

    Deb
  • Rosebay
    Rosebay Member Posts: 17
    edited 30. Nov -1, 00:00
    thanks again for replying. For me, the diagnosis is absolutely crucial because it will determine whether or not I have to change my wonderful, life long career which I love. If I do have RA (which they think), the joint damage and pattern will mean I have to give up my very heavy manual job for good because it will cause even more damage. If it's pallindromic rheumatism, which doesn't damage joints but does become screaming painful hell sometimes, then I can take time off sick and manage the episodes. So again, if anyone can advise, from their experience, I'd love to hear from you.
  • joon51
    joon51 Member Posts: 221
    edited 30. Nov -1, 00:00
    Your symptoms sound so familiar, when my shoulders get in on the act that is what I find worse also like you I have trouble lifting my arm. I too have oa in my hip which was diagnosed through mri I had a X-ray on hip but that showed nothing strange I thought.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    I'm certainly not an expert, but I recall the rheumy nurse saying that it isn't unusual for Palindromic rheumatism to evolve into RA-but we're all different in how our disease progresses, and for as long as you feel able to do your job why not stick to it. If it is RA your employer is obliged to make reasonable adjustments to enable you to better do what you do- an OT can assess the workplace and make suggestions. There are useful leaflets about working with arthritis, try here:
    https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/225-working-with-arthritis

    Deb
  • Airwave!
    Airwave! Member Posts: 2,458
    edited 30. Nov -1, 00:00
    I'm a great exponent of doing what you do and continue to do as much as I can while I can, which is steadily reducing! Having said that the affect of doing heavy manual work is not conducive to arther, as always a balance between exercise, looking after your body and more wear and tear?

    Not an easy issue to solve.
  • Rosebay
    Rosebay Member Posts: 17
    edited 30. Nov -1, 00:00
    Oh Deb, that would be wonderful, but I'm self employed with my own business. I'm not entitled to sick pay or any benefits at all. And I've done everything I can to adjust my work, but some days I'm fine and others I'm in agony or unable to go in. I've lost a fortune with all these hospital appointments, sick days etc. I've tried to change career, but as soon as employers see I've got RA, suddenly I'm not required. I'm so tired, struggling to meet the overheads every month. I can't afford not to work, mentally or financially. This of course does nothing to help my stress levels.
    Thanks so much for being here, I really appreciate it
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Gosh Rosebay, what a lot you're battling. Sorry I haven't useful experiences to offer-I was a teacher for 30 years until the RA made it untenable and I opted out with a tiny pension but rediscovered myself.

    I seem to think that are services based at Job Centres to help folks with specific health issues to find employment, there's a UK Gov webpage which signposts to it :
    https://www.gov.uk/looking-for-work-if-disabled

    I wonder whether it's worth asking organisations like SCOPE or Citizens Advice if they could sign-post you towards a career change?

    Deb