Positive ANA test.

[Mannequin18]

Hi all. My first post. I recently tested positive for Lupus. I have an appointment to see Rheumatologist in January.

Is there any advice that anyone can give me please to help with my first appointment.

We only have one shot to get it right.

Should I start a diary of symptoms and flare ups?

Would that help the Dr?.

Any advice please.

I also have autoimmune hypothyroidism, and autoimmune pernicious anaemia.

Thank you.

[Lupiknits]

Do you get a malar rash? I’d so, take selfies if you haven’t already. One of the best pieces of advice I’ve received from this forum. My selfies have been very useful.

[Mannequin18 in reply to Lupiknits]

Hi, thank you for replying. I have a red mark on my left cheek that looks like a butterfly, but it is there all the time. I don't really know what a Malar rash is.

I have terrible muscle and joint pains, and some days cannot lift my left arm, and my legs are ago y to move. Plus the overwhelming fatigue.

[Chanpreet_Walia LUPUS UK]

Hi Mannequin18,

Welcome to the LUPUS UK HealthUnlocked Community forum. We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

Keeping a diary of all your symptoms is a great idea and will be helpful for your rheumatologist. Keeping track of when your symptoms appear/disappear is also useful in determining triggers that may cause your symptoms, for example, sunlight causing a facial rash. As Lupiknits mentioned, taking photographs of symptoms like a malar rash is also very useful. You may find our blogpost on ‘Getting the Most from your Medical Appointments’ helpful to read at lupusuk.org.uk/getting-the-...

According to The Lupus Encyclopedia, “People who have SLE can develop auto-antibodies directed at the thyroid gland causing it to become either overactive (hyperthyroidism) or underactive (hypothyroidism). About 24% of people who have SLE also have one of the autoimmune thyroid diseases”.

Please let us know how you get on, wishing you all the best.

[Mannequin18 in reply to Chanpreet_Walia]

Thank you for great information. I will let you know how I get on. Thank you again.

[KayHimm]

You have gotten good advice here. I would add that you should record your temperature. Fever is significant.

Good luck with your appointment.

K

[Mannequin18 in reply to KayHimm]

Thank you.

[Hamptons]

Be factual give them information not emotion. Be clear what you want from the appt - make notes as you always forget something. Be you and be honest about impact.

[Mannequin18 in reply to Hamptons]

Thank you.

[jetjetjet]

Hi I would take an outline or bullet point list and confirmation and any paperwork on your other disorders . and of course med list and list of other Doc's you have . Also bring any research you have done on this .

Best to you C & J

[Mannequin18 in reply to jetjetjet]

Thank you for your advice.