Antiphospholipid Syndrome

[Mrs6egg]

I have been diagnosed with APS years ago and I am on life long Warfarin range 3.5-4

I’m suffering agonising pain to both knees but especially the left. Surgeons totally agree that I need Total Knee replacements but are extremely reluctant to do this due to the APS and the high risk of having a stroke & Fatal Heart Attack.

I have been MADE disabled because of this and am housebound and without my husband here to help me, I’m also bed bound too.

I need a Specialist Haematologist who is APS CAPS knowledgeable asap to advise the Surgeons about maintaining safety whilst having this operation.

Can ANYONE HELP ME PLEASE?

I live in Wadebridge Cornwall and my quality of life is non existent. I beg for any advice please?

mrs6 egg

[CSLO]

Good morning Mrs6egg

I'm so sorry to read your post, I can feel your desperation.

Whilst I can't give you any names, I couldn't just walk on by. Could you try contacting Lupus UK, they might be able to help you and point you in the right direction? Alternatively, I wonder whether you could try to organise a phone consult with one of the Lupus specialists at the London Bridge Hospital? Obviously there would be the cost of the consult but that may be less expensive than a face to face.

You might try phoning Professor David D'Cruz's secretary at London Bridge Hosp and explain your situation. No doubt you could Google the contact info. He and his colleagues have a wealth of experience and knowledge and I feel sure could help.

It really shouldn't be necessary for you to do this chasing but it's so often the case that we have to drive our care. Are you based at Treliske for your care? I wonder whether your team could contact a hosp with a specialist Lupus dept, your nearest may be at Bath? Maybe again, get Googling and see if you could give them some names yourself.

I'm sorry I can't give you more helpful info. I really hope you can find a solution quickly

All good wishes to you.

[Mrs6egg in reply to CSLO]

Oh my gosh. Please don’t apologise you have helped me more than anybody else has. I’m so grateful for your information and I can’t thank you enough.

Your a Star ⭐️

💜💜💜

[baba]

Are you aware of the following APS FORUM, you might get more help there:

healthunlocked.com/hughes-s...

Best wishes

[Mrs6egg in reply to baba]

No I wasn’t THANK YOU SO MUCH

💜💜💜💜

[Mrs6egg in reply to baba]

No I wasn’t…. Thank you so much 💜💜

[Bond12]

Hi I have APS too. I have a specialist lupus clinical nurse, and rheumatologist.I don't know who treats you but if you were in contact with people like that they should know. My rheumatologist, Dr Wright, is/was involved with Professor Hughes in the research that discovered APS. Conducted at The Lupus clinic at Guys Hospital. Dr Wright lives in Belfast, is a Consultant Rheumatologist, and does some private work. Maybe a phone call to him might help. Keep pushing though and fight for your right to better health. Sitting back and hoping something will come up won't work, make some noise!

[Mrs6egg in reply to Bond12]

Dear Bond12.

I am so grateful for the fact you contacted me and I can’t thank you enough for the information you have given me.

Thank you Thank you Thank you

Best wishes

Mr6egg xx

[Cazpurple]

I have a sister with aps. She is also on warfarin. She had major plus surgery and did develope a clot but was told this was from the surgery and not her aps. She is due to have surgery on her foot and another major surgery on stoma and prolapse. She will work closely with the doctors to ready her for surgery. These are essential surgeries.

I myself have fm and lupus and i have just last week been speaking with my knee consultant on right knee replacement. I have a long history of 11 surgeries inc 3 ACL replacements. He understands that with fm and lupus my recovery will be harder and longer and that i could still have some problems due to those 2 conditions. We are going to try prp injection first to see if it will help in any way. Im 60 by the way.