Hello, anyone else here have palindromic rheumatism?

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Ladybirdlynnie
Ladybirdlynnie Non-active member Posts: 5
edited 5. Oct 2017, 09:44 in Say Hello Archive
Hi all, I'm recently diagnosed with palindromic rheumatism and experiencing quite a lot of bad flare ups despite being on long acting naproxen. The next step is hydroxyquinine and I haven't really heard anything good about that! However I wondered if anyone had any other suggestions in terms of meds or managing flare ups?

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -0001, 00:00
    Hello

    Welcome to the forums. I am sure you will find support, advice, light relief and friendship here. There are others on here who have palindromic arthritis and I expect they will be able to offer you help and advice.

    If you haven't already found it, Arthritis Care has a factsheet on Palindromic rheumatism which you can download here:
    https://www.arthritiscare.org.uk/do-i-h ... rheumatism

    Arthritis Care also has a helpline which, if you would like to talk to someone about your worries problems, will be able to advise you. It is a freephone no. and is available 10 - to 4 Monday to Friday. Its 0808 8004045. Do give them a ring, but please remember they are volunteers and are not medically trained.

    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 Non-active member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Hello, I don't have that version but I know that some do - I hope they spot your post.

    All of us can relate to tiredness, and those of us with an auto-immune kind the flares and trying various meds until we find the right combination. Naproxen is an NSAID (non-steroidal anti-inflammatory drug) whereas hydroxy is a DMARD (disease-modifying anti-rheumatic drug) and is not unusual to take the two together. I have not taken hydroxy but I don't see it as being any different to the other medications; the aim of the game is to bring disease activity under control to prevent joint damage and, in so doing, improve the quality of life. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Ladybirdlynnie
    Ladybirdlynnie Non-active member Posts: 5
    edited 30. Nov -0001, 00:00
    Thank you for your replies. I have booked an appointment with my doctor so I think I will ask about my options. It's pretty miserable having constant flare ups. The one right now is very debilitating. I am glad I have joined this as I think it'll be good to hear other people's experiences.
  • dreamdaisy
    dreamdaisy Non-active member Posts: 31,520
    edited 30. Nov -0001, 00:00
    I presume you were diagnosed by a rheumatologist? I have a creaky foot in both camps, my rheumatologist deals with my psoriatic arthritis and the GP with my osteo: each ignores the other's speciality, I don't have that luxury :wink:

    If my PsA is playing up I don't bother going to the GP as they do not prescribe my meds and only have a surface understanding of the disease. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Ladybirdlynnie
    Ladybirdlynnie Non-active member Posts: 5
    edited 30. Nov -0001, 00:00
    Yes, until now I have been told it's my hypermobility...but luckily when I went to rheumatology last time I was all bright red and hot with pain and limited movement in my joints...so finally got somewhere. The meds worked great for a few months but now they aren't doing anything really.
  • JenniferB27
    JenniferB27 Non-active member Posts: 74
    edited 30. Nov -0001, 00:00
    Hi there! Yesterday I was diagnosed with Palindromic Rheumatism as well as Fibromyalgia and Hypermobity Syndrome! Great lol I'm still trying to get my head around it all but pleased I finally know what is wrong with me i thought I was going around the bend! The consultant wants to bring my fibromyalgia under control first before giving me meds for the Palindromic Rheumatism. How are you getting On? XJen

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