All time low :(

kimbo1
kimbo1 Member Posts: 29
edited 16. Jul 2013, 15:17 in Living with Arthritis archive
Hello

I am 20 and was diagnosed with seronegative arthritis in February, I started hydroxychloroquinie but this has done nothing for me. I want to try sulphasalazine but atm my white blood cell count is too low for me to start. Recently i just feel like things are getting worse and worse with almost every joint being affected and the pain increasing - the light at the end of my tunnel is getting dimmer and dimmer.

If anyone has any words of advise or reassurance that I will feel better in the future they would be greatly appreciated.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, you are in the very early days of this, yes? February was only five months ago and although the hydroxy hasn't had a beneficial effect there are other meds to try. From reading on here it seems pretty unusual to take hydroxy as a stand-alone med, were you offered anything else? It would appear that the disease is not yet under any form of control hence your feeling rough. What are you taking for pain relief? Do you have a rheumatology helpine that you can ring?

    I went for seven years without any diagnosis or meds so in one sense I think you are fortunate in that you know what is happening. I feel sure that once your meds are properly sorted things will ease and you will start to feel better about the management of the arthritis and the future. I began with sulph in early 2002, since then you name it and I've more-than-likely tried it (apart from hydroxy). We live in world of instant fixes and gratification but arthritis doesn't fit in with that. It's a slow road but you are heading in the right direction and you will get there. I am sure that things will improve given time, they did for me, they have for others on here and they will for you. I wish you well. DD

    PS When I'm feeling low I remember a quote from Khalil Gibran: the more sorrow carves into your being the more joy you can contain.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Hello Kimbo
    I feel much the same ( see my frustration post). BUT Dream Daisy is right there are plenty more medications out there for you and you are moving in the right direction just got to get the right one for you. As hard as it is you got to be kind to yourself and there is still hope out there. Without having a crystal ball I can't predict what will happen but I am sure you will feel better in the future.It might take a while (or not if you get on the right med for you) but I am sure you will feel better. The mental side of things does really affect how you feel about having the arthritis so like others have said to me maybe you could go to your gp and think about counselling? Or a uni/college counsellor if you are there?
    Pm me if you want to chat am in a similar position to you
    Kat x
    How am I gonna be an optimist about this?
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I agree. You will feel better once you feel you have some control over the disease. Feeling completely out of control is very scary whatever is involved but especially with arthritis. Like DD, I wonder why only hydroxy was prescribed. I take it along with methotrexate but I don't think it's a very strong med on its own. Can you top up with anti-inflammatories until your WBC is higher? Your GP could prescribe them.
    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 Kimbo,

    Like the others I just want to encourage you to hang in there and ask the rheumy for help. I think it takes all of us time to find the right combination of drugs to help, my rheumy started me with hydroxy..., then added in sulfasalazine, now I'm adding in methotrexate which seems to be helping. There has been lots of research about effective drug combinations and they are making progress, so there's always a glimmer of light at the end of the tunnel.

    I think for me the best tactic is keep talking, let those who care about you know when you're struggling so that they can help and support you-though asking for help can be hard for us- I know my own husband often just gently strokes my arm and says he wishes he could make it better- if I don't tell him he feels excluded and frustrated.

    Keep talking and let the lovely folk on here share with you and support you, at least we all understand the pain, the frustration and the secret fears that these diseases bring.

    Deb xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hello Kimbo I am so glad you have joined us only sorry you are suffering like this....I cant help with any advice on the meds I have OA but like the others have said it is early days..and hopefully they will get some help very soon.
    I might not be able to offer any help but i am a good listener....(((()))xx
    Love
    Barbara
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi Kimbo
    I agree with all the others have said
    The thing with our conditions is its trial and error to see what works best for us
    Some medication can work a treat for someone else but not for others
    Keep plodding along with us all we are with you
    Maria
  • kimbo1
    kimbo1 Member Posts: 29
    edited 30. Nov -1, 00:00
    hi everyone

    Thank you so much for all your words of support it has been very helpful :) I have been to the docs and upped my tramadol and naproxen which had helped a bit. And seeing my rheumy in a week so hopefully then the next step can be taken.

    Having a rant on here and saying everything definitely helps!
    x
  • Mormodook
    Mormodook Member Posts: 130
    edited 30. Nov -1, 00:00
    Keep in there. I was young too when first diagnosed .... That was 15 years ago now . The rheumy dr will have loads of ideas up their sleeves to try with you and from experience they won't give up on you and will find something that will suit you better . Lots of the meds they use take time to get in to the body 's system which is frustrating to say the least , but hang in there - it will ease up ! I know they have a young section on this forum . I'd have loved that when first diagnosed . Hope that helps you a little bit . :)
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Hi Kimbo

    Soory that you feel low with what is going on currently. But, it is great to hear that it seems things are getting a bit better, tramadol and naproxen are helping too. It is a long road, and can take a while to find some meds which help you, but you will get there. Keep posting,as there is lots of support and you are not alone in this fight.

    Janie xx
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Let us know how you get on at the rheumatologist ! Glad its eased up a bit :)
    How am I gonna be an optimist about this?
  • kimbo1
    kimbo1 Member Posts: 29
    edited 30. Nov -1, 00:00
    Hi everyone

    Saw my rheumy yesterday and spent 3 and a half hours at the hospital!! Had a steroid injection which has eased joint pain a bit but now have a very dead leg. They are thinking of putting me on methotrexate, what are peoples experiences on this?
    x
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Good. The injection is a start. I've been on meth for about 13 years with no problems. Take it with food an ensure you have all the blood tests on time. Lay off alcohol completely at first until you know where you are with the blood tests. It's done a very good job for me.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • 19smp59
    19smp59 Member Posts: 105
    edited 30. Nov -1, 00:00
    Hi Kimbo1

    I have no knowledge of inflammatory arthritis but just wanted to say good luck in getting your medication sorted out. From reading the other posts it does seem to be a bit of trial and error and different things work for different people.

    When I first came on this forum for advice the people here were brilliant and it's good to talk sometimes to people who know how you feel.

    Good luck

    Suzanne x

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