Hello

Woodles

Hi,

I’ve found this amazing community, by chance, through the March knitting group in Facebook. Oddly it coincided with my undergoing rheumatology investigations.

I’m a mum of two fab children (14 and 10), have an amazing husband, two gorgeous Cocker Spaniels and a job I adore (school nurse). We live in a gorgeous little village and well, I’m so thankful that I can say that, health issues aside, life is great.

The diagnosis appears to be antiphospholipid antibody syndrome and psoriatic arthritis. I’ve seen two rheumatologists to ascertain a secure diagnosis and may be being impatient here but they just won’t say for certain. They both, along with my GP, agree it’s the most likely condition (and I seem to meet all criteria) so why not just say “it’s PSA, let’s get treatment underway”? I want to get back to work and be more comfy…

Thanks for accepting me into your fab community, much appreciated.

Wx

anneb82

Hello @Woodles

Welcome to the online community and thank you for joining us. I hope that you will find this a safe and friendly place to continue sharing with us.

So you are in that very frustrating situation at the beginning of your journey where you are waiting for a set diagnosis. You've seen two different rheumatologists and your G.P who all think that appear to have Antiphospholipid antibody syndrome and psoriatic arthritis. You feel very frustrated because you want to get started with a treatment but aren't able to until you have a set diagnosis.

It is often a very frustrating time because everything is so up in the air. You sound like you have a very supportive family and a great lot of joy in your life which must bring you comfort! Completely understand the want for comfort though and I really do hope that you get some answers and a set diagnosis soon!

In the meantime please know that we are all here to help and provide you with support. Whether or not you need to have a good old rant or if just just want some information. There is normally someone around most of the time to other some guidance. Below are a couple of links that I thought might be of use to you in the meantime while you wait for the set diagnosis. I hope they help.

https://www.versusarthritis.org/about-arthritis/conditions/antiphospholipid-syndrome/

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

Please do let us know how you are getting on and do keep sharing.

Take care

Anne (moderator)

Woodles

Thank you so much for a lovely and understanding welcome.

The links are great too!

If I have questions where’s the best place to ask please? I ask mainly because last night I awoke to find a lump has appeared on my hand, from nowhere. I’m assuming it’s related. Are lumps and bumps on hands usual in PSA? Why suddenly appear?

Apart from questions, more importantly where is the best place for general chitchat? I am sure a sense of community, somewhere to feel I can pop into over a cuppa, will do me the world of good right now!

Again, thank you. I hope you’re having a comfortable day!

Woo x

stickywicket

I confess I'd never heard of anti...etc...etc so I checked it out on NHS. It sounds particularly unfortunate if you're acquiring another autoimmune disease at the same time. I hope something can be done quickly.

Here's what I know of lumps and bumps after very many years of OA and RA. OA lumps are bony bits on joints. They stick out awkwardly but don't move. RA lumps (rheumatoid nodules officially) also tend to arise on joints or at least bony bits. I have two fine examples on my kneecaps. But, although firm, they are wiggly ie I can move them about with my fingers.

To be frank, I thought these only went with RA not PsA and I think it'd be a good idea to let your rheumatologist (preferably) or GP (failing access to rheumatology) know asap as it might help them get to the bottom of this. Photos can be useful.

For chitchat try the....erm....Chit Chat forum☺ on the main page of the menu and there you'll also find 'Val's Cafe' where I'm sure you'll be made welcome.