Do you log your ongoing symptoms and or flares with your GP?

[Bobbydoodle]

Hi everyone

A little about me for background.. I was diagnosed with APS 6 years ago and then Lupus SLE not too long after that. I take warfarin, hydroxychloroquine and vitamin D.

My questions relates to very day symptoms and flares. Now that all the diagnosis is done and I have my routine appointments with my specialist paid every 6-12 months.

My GP sorts my repeat prescriptions and medication reviews. Other than that I don’t see my GP as when I have symptoms or a flare my attitude is ‘well there is nothing anyone can do it’s not cureable so what’s the point going to the doctor?’

My problem with this is my gp has zero record from year to year (except my specialists letters to them) of how I struggle but equally would I be wasting their time? Sometimes I think (like we all do with lupus) I can’t go on like this but then I know I have to but again no one medical knows this.

Do you check in with doctor or go to them when you have a flare? How do you manage things between specialist appointments?

[Lupiknits]

This can be difficult. In my case, if a flare goes on for some time, I can try calling a rheumatology nurse for advice, but the response takes days.

In the past, on going to a GP I’ve found that they ( quite rightly) say they do not have the specialist training or knowledge and immediately contact rheumatology directly, which is the fastest way to get seen by a rheumatologist.

This may help in your case. Worth a try if you can get a GP appointment, which is another matter of course.

[Grange30]

Hi, I have a direct email link with my rheumatologist department at the hospital who consults with the specialist about any queries so might be worth asking g for this yourself. I hope this helps

[Poshcards]

My GP hasn't a clue how I am with my Lupus! x

[Suvi8901]

GPs? Where have they gone? I’ve literally spent a whole week TRYING to get an appt. without any success. The phone is constantly on hold. Have given up.

Arm hurts keeping the phone to my ear and waiting.

Just too frustrating to deal with. I’m now resigned to self manage totally. I keep a diary but so what? Who cares? No one.

SAD but there you go…?😱🧏