First lupus related appointment tomorrow - top tips please!

[Bonnie39]

Bloods to find cause of early stroke, persistent migraine and neuropathic pain in June showed evidence of lupus and APS. Bloods repeated after 3 months showed increased markers. Neurologist seized on APS part of problem and referred me to a haematologist. Finally the appointment is tomorrow. Top tips for what to ask, what to expect and advice on if she will be able to treat the lupus which is the primary issue please.

My usual GP unwilling to follow the lupus diagnosis despite me reporting symptoms of it to him for years (bloods were a relief - the health issues Id faced for years fell into place), but a locum has referred me to St Thomas', and I should get a call to arrange my first appointment at the lupus clinic there, but I really need something to make me feel less awful PDQ.

What are your experiences please?

Thanks.

[daisyd]

Sorry this might be a bit late, what ever you do have a list of questions you want to ask.

A list of your previous medical history with dates if possible.

List of medication

[Slowmo]

May not be of much help now but do take questions with you, also a family member or friend who knows how the illness affects you is often a help as they may ask questions you forget and/or retain info, I often forget things and remember them as soon as I walk out the door.

All the best, hope the appt helps.

[Bonnie39]

Thank you both. Saw a lovely haematologist and she talked me through the bloods etc and confirmed I have APS and on taking a history confirmed lupus too. Having waited 8 weeks post referral to her she's writing to my GP to ask him to refer me to a rheumatologist (!!) to get help for all the other symptoms that I've been struggling with for years. But she wants me to start treatment with wharfarin and heparin ASAP - I'm booked to start with daily blood tests for a few weeks from Wednesday. Suddenly things are happening! She told me I'm taking the news of being put on serious medication for the rest of my life at such a young age very well - like I had any choice!!! I explained the stroke I had at 31 was terrifying and at least the risk of another one will start to subside as of Wednesday.

Feel a bit swept away now to be honest. The reality of the condition has suddenly hit.

[daisyd]

Glad it went well, you are seeing the right people now. I have been on Warfarin for a while now wish I had been put on it years ago.

Hits you like a ton of bricks doesn't it, good luck

[Bonnie39]

Thanks Daisy -0 it does! Really looking forward to my appt at St Thomas' in January. I think plaquinil will help enormously. Jolly gad Im done with the heparin as my tummy is very sore and bruised!