Anyone else got Felty's Syndrome?

Zola
Zola Member Posts: 3
edited 7. Aug 2015, 01:59 in Say Hello Archive
Hi,
I am 34 and was first diagnosed with arthritis 9 years ago. I started with Polyarthritis which generally gets referred to as rheumatoid now, although it can affect any of my joints. I have been lucky in the sense that after terrible first couple of years my arthritis was well managed, with drugs and with advice from an Arthritis Care course, to the point where I had over two years asymptomatic and not needing any drugs. (Continued to suffer with mild fatigue). About 3 months ago I had a flare up, to went to see my consultant but he won't let me take anything other than paracetamol/ibuprofen because I have Felty's Syndrome.
As part of my arthritis I have Felty's which means I have an extremely low neutrophil count (white blood cells) and enlarged spleen - so effects my immune system. Everything I know about Felty's is from the internet and it seems my Rheumatologist is far from understanding and seems unsure what to ; His Registrar who I have seen earlier this year was keen to try something to manage the Felty's (as she has treated it before, in a previous job) but the consultant was not on board with this. His only suggestion has been to remove my spleen which as far as I can see (online) this should be the last resort.
I would really love to hear from someone who has Felty's or can someone who can suggest what I should do. I want to slow the progression of my Felty's, with appropriate medication, so I don't need my spleen removed. - as I believe this is possible.
Thanks for reading.

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums Zola from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Moderator JK
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello Zola, it's nice to meet you and I hope that someone on here will be able to help. I have not heard of Felty's so cannot help in any way but I am familiar with other conditions cropping up whilst we deal with arthritis - it's far from easy. I wish you well and I hope that someone with more information or knowledge will spot your post. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello Zola and welcome from me, too.

    I wish I could say you'd be likely to find other people on here with Felty's but I can only recall one - 'arfaitis' who hasn't posted for some time now.

    I had to look it up and there seems to be very little info on it. It must make it more difficult if your consultant and registrar disagree on treatment. Have you any means of finding out if there are any rheumatologists who are specialists in Felty's? I know that occasionally people have to travel widely to find an 'expert'. Would it be worth trying? Maybe PALS could help.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Zola
    Zola Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you both for your replies. I am going to spend some time searching for a specialist- i have looked online and need to make some phone calls and get my gp to refer me.
    Thanks again. Nice to have found somewhere i can express my worries.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I think that's a good plan. Please let us know how you get on and feel free to come here anytime you want a chat with people who understand at least part of your problem.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    You're more than welcome, Zola, we may not have the same conditions but we do comprehend the struggles that everyday life can present especially when it's layered with unwelcome extras. I wish you well in your search, I sincerely hope you can find someone to help and we're here if needed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben