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ellerd
ellerd NonActiveMember5yrs Posts: 12
edited 16. Oct 2013, 07:47 in Say Hello Archive
Just wanted to say hi. I have been diagnosed with Sjogren's syndrome (an autoimmune disorder), inflammatory arthritis in the hands and RA. I am taking 4 sulfasalazine a day. I also have CKD (kidney disease). At first the sulfasalazine tablets helped to get the swelling down in my hands but they are now swollen all the time, making daily life difficult. I have regular blood tests ESR is 2 i.e. below range, red blood cell 3.5 (below range) mean cell volume 105 (above range) mean cell haemoglobin 36 (above range). My GP doesn't seem concerned about these figures and I don't see my rheumatologist until next Feb. My feet and ankles are very painful and my toenails have become very discoloured and several have come off. Had test for fungal infection of the nails which came back negative. Any help, advice or just a friendly note would be appreciated.

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  • dreamdaisy
    dreamdaisy NonActiveMember5yrs Posts: 31,520
    edited 30. Nov -0001, 00:00
    Hello, I am beyond tired but something in your post has struck a chord. I wonder if you have a history of eczema? Or psoriasis? I will be back tomorrow, in the meantime I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • marrianne
    marrianne NonActiveMember5yrs Posts: 1,161
    edited 30. Nov -0001, 00:00
    Welcome to the forum Ellerd ,I have R/A and osteo ..Marrianne :)
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -0001, 00:00
    Welcome from me too ellerd. I have RA and take methotrexate and hydroxychloroquine. I'm a bit puzzled by your words 'inflammatory arthritis in the hands and RA' as surely RA is a form of inflammatory arthritis?

    I'm afraid I don't 'speak blood tests' :) but, if the sulph isn't controlling your arthritis, I think it's a bad idea to wait until February before seeing the rheumatologist. I'd be ringing up to get an earlier appointment. I hope he/she can help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • ellerd
    ellerd NonActiveMember5yrs Posts: 12
    edited 30. Nov -0001, 00:00
    Thanks for replies. Don't have eczema but very dry skin and "horrible" toe nails!! The rheumy guy said "inflammatory arthritis of the hands but RA elsewhere, so, like you I'd have thought RA was inflammatory. Who am I to question him!! I did take hydroxychloroquine but had terrible stomach cramps and diarrhea so changed to sulphasalazine. Didn't want to take methotrexate as I had heard of other people having problems with it.
    I get tired so easily and quite sad (wouldn't say depressed).
    Its good to chat. Thanks.
  • frogmorton
    frogmorton Member Posts: 30,448
    edited 30. Nov -0001, 00:00
    Welcome to the forums form me too :)

    do you have access to a rheumatology helpline? I do; and therefore rheumatology nurses who I can ring for advice. Just a thought - I agree with Stickywicket that February is a long way off if you are struggling.

    Love

    Toni xxx
  • ellerd
    ellerd NonActiveMember5yrs Posts: 12
    edited 30. Nov -0001, 00:00
    Just got back from GP (had to have annual review of medication and results of recent blood tests). OK to stay on med. but BP was a bit high (153) so going back on 5th Nov. also told her I was always so tired and feeling sad and have been prescribed Citalopram. Thanks for your posts.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -0001, 00:00
    Your GP has done his best for you by monitoring your BP and prescribing citalopram. However, if the sulphasalazine isn't controlling your arthritis, that also needs dealing with and he can't help there. You need the rheumatologist and, if your appt isn't until February, I'd ring for an earlier one.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • mike26
    mike26 NonActiveMember5yrs Posts: 416
    edited 30. Nov -0001, 00:00
    welcome from me ellerd
    I to have very nasty toe nails thick and flakey my condition is PsA.
    it does get us all down sometimes,but i always think it could be a lot worse :!: keep chin up and good luck mike26 :roll: :?

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