Rheumatoid and Hughes

Hi to all.

My mum has had Hughes syndrome from birth coupled by rheumatoid arthritis from 20 years ago.

She is due to have surgery in a couple of months for a total knee replacement.

If there is anyone out there in a similar position or that has had a similar operation , please inbox comment or drop me an email at mariadaniella@hotmail.co.uk.

She is only 48 and ia curious about peoples experiences

Thank you .

10 Replies

  • Hi Mariadaniella- I have had RA for 11 years and am on Enbrel. I had a total Knee replacement last Monday . I was in hospital for 3 nights and am now at home and walking with crutches. I was advised to come off my medication for 2 weeks prior to the surgery and will stay off it until my wound has completely healed (4 to 6 weeks). I feel fine and am managing the pain well with co-codamol. I'm not aware of Hughes syndrome. Wish your mother good luck and I hope the surgery goes well.

  • Thank you so much and hope you get better soon!

  • My sister (also with RA) has had two knee replacements. She was very keen that she did lots of strengthening muscle exercises before and afterwards as her daughter, a physio, had impressed on her how much difference this made to people's progress and return to full function. She now walks better than I do despite being five years older and is very pleased with the results.

  • im very glad! My mum has such total damage that its very hard for her to walk much and obviously to do many muscle exercises.

    Thank you for your reply.

  • Morning.. Yes I have had RA and Fibromyalgia for about 4 years and was diagnosed with Hughes Syndrome in August.You are the only one I have found who has both.It seems to be very rare to have both.

    I hope I never have to have any joints replaced but wish your mother well

  • Thank you so much! It is very rare and in most cases just extra complicated because of the blood clotting and the extra high immune response.

    Her doctors have treated a lot of RA and Hughes patients, so at least she will be in good hands.

    Hope you are well.


  • That's pleasing to know for your mum.I am the first case for 30 years at my hospital.I didn't even know you could be born with it.I am 57 and live uk

  • It is very rare but i assume its genetic since all the women in my mums family are diagnosed with it (grandmother mother and auntie).

    Tricky condition.

    Hope you are well

  • I will email you do we don't block up this post

  • Hi all,

    For your own security it is not recommended that you put your email addresses on public display. You can private message anyone on the forum quite easily by clicking on their username and then you will see a little box that says message. Click on this and a message box will appear where you can write your message in private.

    Beverley (NRAS Helpline)

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