New Rheumatologist

[donnabrain]

Saw my new rheumatologist last Thursday, and so far I am impressed.

Lupus unit were dismissive as my bloods are normal but she says I could be sero negative.

This was at my local hospital, which on the whole does not have a very good reputation, but I have found since covid that they have improved a lot.

She was interested in my bowel and stomach problems too, and seems to be joining up all the dots.

Sent me for bloods and x rays.

A couple of days later I received a double appointment for next month.

I am to go for an mri( hands) and then go upstairs to see her.

I also have a follow up appointment for next year.

She might do a lip biopsy at some point, and might start me on sulthaziene ( have I spelled that correctly?)

She has increased my hydroxychloroquine

[HollyHeski Administrator]

Good news, it makes such a difference to be listened to and treated with respect. So glad the whole picture is being looked at - thank you for letting us know x

[lupus-support1 Administrator]

I am sorry to read the lupus unit was dismissive. Which Lupus Unit was it?

Sero-negative Lupus in not uncommon. A diagnosis is or should be made, clinically based over time. It should never be based just on a positive ANA, which healthy adults can have, a malar rash, which only approximately 25% have & lupus nephritis. A diagnosis should not be made on “the Criteria ie 4/11” because it was designed for putting the same patients for clinical trials, not for diagnosis. Diagnosis can take time, several years sometimes.

I am not saying you do or do not have SLE. If you want to talk some more. Please join LUpus Patients Understanding & Support (LIPUS) here at HealthUnlocked!

Be well,

Ros

[MaryF Administrator]

That is great news, I was seronegative for years, and blood tests are not the whole picture, eventually myself and children passed tests for everything. MaryF

[KellyInTexas Administrator]

What good news- and for it to be local is such a relief. Isn’t it nice when some of life’s logistics fall into place?

Pleased to hear you have such a big picture, comprehensive minded physician looking out for you.

Keep us posted on your appointments!