Erosive Gullwing Arthritis — Scope | Disability forum
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Erosive Gullwing Arthritis

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Bingo
Bingo Community member Posts: 62 Courageous
Has anyone been diagnosed with this?  Ive had bumpy nodules in the end of my fingers and swollen fingers for a few years now.  Took it to my GP years ago and he just shrugged his shoulders.  Thought it might be gout which I have also suffered from for about 15 years.  Mentioned it a couple of times and earlier in the year I asked for a referral for Xrays as it was getting worse and more debilitating. Its now spread to my right wrist.  Saw a Physio the other day who explained to me that its Erosive Gullwing Arthritis. Annoyingly they said they could have done something about it had they caught it in time. Now its a waiting game as to whether the specialists will want to take any action or not as to treating it with drugs which apparently can be quite brutal.  They just gave me a splint to try on my right hand and some exercises for now.

I can still use my hands but its getting worse.  Just wondering if anyone had suffered from it and if they had treatment or what to expect down the road. Im a Musician (guitar and keys), motorcyclist and spend most of my life on the computer. The thought of it getting to the point where I cant do any of those things in unthinkable but hopefully it wont come to that.

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  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @Bingo

    I just wanted to check in and see you had any updates? Were they able to treat it? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Bingo
    Bingo Community member Posts: 62 Courageous
    edited February 16
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    Hello @Bingo

    I just wanted to check in and see you had any updates? Were they able to treat it? 

    Thanks Hannah. Ive had more Xrays and a referral to a specialist at the [Removed by moderator - Personal Information] hospital (never been there before) but its not until June! Its spread to my right wrist now which I think is another reason they sent me for more Xrays.  Just  a bit in the dark really as to what the long term prognosis is and what treatment, if any there is going to be.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    @bingo, just to let you know, I edited your comment a little as to not divulge too much and keep you safe! I'm so sorry you have been kept in the dark. I hope your appointment goes well. Have you asked if they have a cancellations list? You may be seen earlier? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Bingo
    Bingo Community member Posts: 62 Courageous
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    @bingo, just to let you know, I edited your comment a little as to not divulge too much and keep you safe! I'm so sorry you have been kept in the dark. I hope your appointment goes well. Have you asked if they have a cancellations list? You may be seen earlier? 
    Thats fine. 

    Yes I did ask as we are usually away around that time and obviously the earlier the better really as it seems to have advanced quite quickly.  They said there wouldn't be any earlier appointments or a cancelation list.  I just hope I dont wait all these months just to see a consultant who tells me the same as the Physio did and its not a waste of time.  I am hoping they will advise on treatment and start it straight away although the Physio did describe the treatment as a bit "brutal" whatever that means. 

    I still think its not just what they have claimed it is though and that some of it is Gout related. I keep getting flare ups in my left index finger which I know are gout as I take some Gout medication and a few days later they are gone.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Oh, that's such a shame. I hope so for you too and that you get every bit of support out of that appointment. Tell them I told them so! ;)

    I hope it isn't "brutal" like they have said. Sometimes treatments for one thing can help another. Like my friend is on antidepressants because they help her migraines. But all the hopes you get a definitive answer! 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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