Hi everyone

EllRip47
EllRip47 Member Posts: 3
edited 19. Aug 2018, 14:53 in Say Hello Archive
Hi I’m 47 woman who was diagnosed with PsA last year after developing painful swollen fingers and sore feet. I started on Naproxen then Sulphasalazine then Methotrexate was added. This seemed to all start working about a month ago and last two weeks was first time fingers were unaffected. However this Monday Bloods came back as low White Blood cell, Neutrophils? I think were too low. Nurse phoned said I had to stop DMARDS and have another blood test in 2 weeks. Was gutted. Symptoms now returning. Just hoping this will be a short break.
I’m joining this forum as tbh I’m feeling very lonely. I want to connect with others who are affected by this illness cos although I have friends I think it’s really hard for them to truly understand what this feels like.
Also the fatigue is dreadful. I work and am just about coping but collapse when home and can’t go out in the evening or look after my house.
I’m a bit better at the weekends as I am learning to pace my day better.
I’m looking forward to chatting with people on this forum
Thanks for reading this post
Cath

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Cath Welcome to the forum from the moderation team.
    Sorry you are in so much pain if you want to talk to someone it is 08088004050.. there are lots of friendly and sympathetic people who will understand what you are going through and they all have Arthritis of some kind, in fact it won't be long before someone answers your question.
    All the best Christine
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    You're doing well, Cath. It might not feel like it but you are learning the valuable lesson of pacing yourself and are managing to work despite all the pain and upheaval.

    You have just discovered the value of our blood tests. Again, it won't seem like a positive thing but they do highlight potential problems before they become actual ones and that does save us from a lot more bother further down the line.

    I have RA which, because I didn't get on the medication soon enough, has led to OA too. Lucky me :roll:

    It seems fairly common for people to have to come off their meds for a while to let everything settle down. Sometimes, second time around, there are no problems. Sometimes a different med has to be introduced. I hope you won't be too long without them.

    Please join in anywhere you like on here. Living With Arthritis and Chit Chat are the most popular forums but Chit Chat has been quiet for some time, apart from the 'virtual cafe' where I know you'll be made most welcome. Arthritis talk is usually on LWA. I shall look forward to seeing you around :D
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I began PsA back in 1997 but it wasn't accurately diagnosed until 2006 when my skin helpfully obliged with a bout of pustular psoriasis on my palms and soles. I began DMARDs back in 2002 but it was all too little, too late. PsA traditionally begins in the smaller joints of the body such as the fingers and toes, mine began in my left knee. Over the years it has spread to other joints and OA was diagnosed in 2011 so I have the set. :wink:

    I remember in my early years stopping and starting medications, pausing whilst my bloods corrected themselves; now I am on a regimen that gives me lovely blood results which is how I know it's being effective and the disease is controlled. For years I was on fortnightly bloods and once or twice they showed potential problems of which I was blissfully unaware. Now I am on two-monthly which is sometimes three monthly as I forget. :oops:

    Pacing ourselves is very important and can be hard to do: my motto is 'Stop when you think you can do more.'. Pain causes extra tiredness, I can control how much stuff hurts to a certain extent with the OA but not the PsA, I have no say in what that does. The last few weeks have been very tough despite the medication but with a lifetime of auto-immune troubles it isn't surprising. I hope you find the forum to be of interest, we all get it because we've all got it. DD
  • EllRip47
    EllRip47 Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you all for your kind replies.
    I think I am going to find this forum very helpful. It’s great to have contact with others who can understand the illness. I am also looking forward to helping others if I can.
    Sticky wicket and Dreamdaisy: Your posts have really given me a boost. I can’t thank you enough. It helps so much to hear other people’s experiences. Dream-daisy: I am sorry to hear you’ve had a bad few weeks. I hope things improve for you soon.
    I think I am gradually beginning to see this thing as a journey. Not one I would have chosen but nothing I can do about that!!’
    It will have its ups and downs I guess.
    On a positive note I think I am actually feeling a bit better in myself after not taking SulphaS for 5 days. Yes my fingers are swelling up and painful but the horrendous morning to night fatigue is easing up a bit.
    If this continues then I’m going to ask to stop the SulphaS but continue with the MethX.
    I had suspected the SulphaS was making me more fatigued than usual.
    So maybe this meds break will be useful after all :)
    Although not looking forward to missing MethX dose on Monday.
    I did that once due to messing up with ordering repeat and felt dreadful.
    Anyway sorry for rambling and thank you again xxx
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    It does help just to be among people who understand without lengthy explanations. We all know the value of that.

    If you're feeling better in yourself without the sulph that's a good thing. Sometimes things can work out not quite as planned. I don't know how much difference missing the meth will make. I've been on it for so many years that missing the odd dose more or less goes unnoticed. A few weeks, though, is a different matter.

    As with most things, getting used to coping makes it all easier. We don't get as stressed when a new pain crops up or even when we flare at inconvenient times. We know it happens. We'd rather it didn't. But we also know it will pass and what we fondly call 'normal service' will be restored.

    I hope you've had a reasonable weekend and that the week ahead won't be too demanding.

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