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Sparkys6887
Sparkys6887 Member Posts: 58
edited 9. Jan 2013, 19:48 in Say Hello Archive
Hi

My name is Mark. I was diagnosed 12 years ago with Rheumatoid Arthritis at the the of 30.

I'm married with a four year old daughter and 12 year old step-twins. I also work full time as a psychotherapist. I've been on steroids for all of the 12 year since diagnosis and before Christmas started taking sulpasalazine and hydroxychlorine. I had awful side effects from these which wiped me out for a couple of days. My RA Nurse Specialist agreed that I should come off them over the Christmas period and start again in the New Year. So that is what I'm doing. Though I've been diagnosed for 12 years I haven't had the right support till now so I'm hoping I'll finally be able to get on top of this disease!!

Oh I also have a condition called syringomyelia and steroid induced oseoporosis.

Mark

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, it's good to meet you and I hope the forum will be a good source of help, information, encouragement and support. Having said that I've had a rough day and will soon be logging out - I apologise but I'm not much use tonight. I promise to come back tomorow and reply properly. DD (who has PsA, OA and has recently had a double carpal tunnel op).
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    Hello Mark and welcome from me, too. I hope you can get on top of things, too. Twelve years is a long time to go on just steroids but at least they're now starting to get you on the right meds. These can often be difficult at first and Christmas can't be a good time to start them but, hopefully, it will be a case of second time lucky for you. It's a great pity you have osteoporosis as a result of the steroids. I'm sorry, I haven't heard of the syringomyelia. I have RA too and, luckily, doing well on methotrexate and hydroxychloroquine.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Sparkys6887
    Sparkys6887 Member Posts: 58
    edited 30. Nov -1, 00:00
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    Thanks for your welcomes. Glad you are logging off and looking after yourself and chat soon.

    I did take sulpasalazine about ten years ago but it didn't much help and they weren't offering combination meds then either. Hope something works meds wise as I've been struggling with work and home for to long and now want some fun!!!!
  • Sparkys6887
    Sparkys6887 Member Posts: 58
    edited 30. Nov -1, 00:00
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    Oh forgot to say. Another reason for not being on DMARD's was their effect on fertility. My wife and I have had four pregnancies in Eight years three of which ended in misscarriage (one of which was twins) and thankfully one beautiful baby girl who is now four. Consultants were often frustrated as they weren't able to offer much support apart from one saying cant you just get your wife pregnant quicker!!!! Around November after another flare-up and having broken my ribs earlier in the year I decided I couldn't continue to try and that I was worried about my quality of life. We agreed to stop trying and have applied to adopt. I hope my Disabilities don't stop that from happening. We have had very positive contact with the adoption team so far.

    Sorry for rambling

    Mark
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