Hello, anyone else here have palindromic rheumatism?

Ladybirdlynnie
Ladybirdlynnie 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?

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 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 Member Posts: 31,520
    edited 30. Nov -1, 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
  • Ladybirdlynnie
    Ladybirdlynnie Member Posts: 5
    edited 30. Nov -1, 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 Member Posts: 31,520
    edited 30. Nov -1, 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
  • Ladybirdlynnie
    Ladybirdlynnie Member Posts: 5
    edited 30. Nov -1, 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 Member Posts: 74
    edited 30. Nov -1, 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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