ANA homogenous & cytoplasmic pattern - what’s next?

[ShonaGreen]

Hi, newbie here, age 48 post-menopausal female. I’ve got severe chilblains on my toes at the moment, very swollen and brown discolouration, had Raynauds for last 10+ years but this is the worst it’s been yet. Saw GP and they’ve requested referral to Rheumatology for possible Connective tissue disease, specifically Lupus and they’ve requested blood tests to do before appointment.

In past 8 years I’ve seen Rheumatology twice with bad chilblains on hands/toes, potential malar rash, livedo reticulus, poor circulation with purple feet, migraines and more recently bad joint pain with knee osteoarthritis. Diagnosed with POTS but no major symptoms.

Previous ANAs have been 1:160 and 1:320 with ENA and other tests being negative so discharged from Rheumatology.

Recent ANA is 1:160 with homogenous pattern, also mentions cytoplasmic pattern but lab notes say that they haven’t gone on to do ENA test due to having cytoplasmic pattern. I’ve tried to find out why this would be the case but can’t find much info about this. I have a GP appointment to get the other blood tests and wondering if I should ask for ENA too?

Any thoughts on the cytoplasmic pattern and whether this has any relevance would be much appreciated, as wondering if this means I won’t be seen by Rheumatology now? Thanks for your help!

[KnitSewPurl]

southtees.nhs.uk/services/p...

Not sure if you came across this. There were others reports as well if you want that gives .uch clearer low down about both .

Trials conducted and researched done by doctor's. If you search ana , homogeneous and cytoplasmic it will pull up quite alot of searches

[ShonaGreen in reply to KnitSewPurl]

Thanks KnitSewPurl that’s useful info, appreciate your help!

I’ve been doing some research but still not sure why the lab are saying they wouldn’t test ENA when cytoplasmic ANA is present even though there was a positive homogenous pattern too. I’ll have to wait and see what happens next.

[KnitSewPurl in reply to ShonaGreen]

Yes, it is part of Ana profile GP needs to take this up with the lab , to fine out more why . And they need to refer you back to rheumatology preferably to a different set of rheumatology team if possible with a fresh eye

[ShonaGreen in reply to KnitSewPurl]

I hadn’t thought of that, will get in contact with them,, thank you KnitSewPurl

[Barbara17]

Hi Shona. Welcome to the group. I’m not sure about cytoplasmic but I definitely recognised those feet! Mine look very similar at the moment and the only thing that gives me any relief is steroid ointment. I use dermovate - only available on prescription so ask your doctor. I also have Raynauds and SCLE.

[ShonaGreen in reply to Barbara17]

Thanks @Barbara17, I’d forgotten about Dermovate, prescribed it a while ago for chilblains on hands, will ask GP. Hope your toes improve soon!

[KayHimm]

SonaGreen-

You certainly have painful looking feet. It is clear you are suffering. It seems because your antibodies are not to the nucleus of the cell the rheumatologist will run special tests to try to capture the specific antibodies.

These auto antibody tests are expanding. Don’t worry. The lab knows what it’s doing. The rheumatologist can explain everything and tell you what further testing they are doing.

Best of luck.

Kay

[ShonaGreen in reply to KayHimm]

Hi KayHimm thanks for your message. I contacted my GP and they got the lab to do the ENA test which is good news. On the plus side it helps that it’s not so cold at the moment as toes seem to be getting better hopefully!

[KayHimm]

That’s great, Shona. The lab probably couldn’t do it without a doctor’s order. Positive ANA reflexes to specific antibodies but in your case they were alert your doctor that the results necessitated approval.

These tests are very expensive and the NHS might have strict protocol. You needed the further testing and it was approved.

The rheumatologist may do additional testing. Be patient. These illnesses are unfortunately hard to diagnose.

Kay

[KayHimm]

Shona -

This is all beyond complicated but looks like when the majority of antibodies are to the cell cytoplasm further testing is indicated. Your GP ordered the ENA but there may be more tests the rheumatologist will do. The rheumatologist is the expert in autoimmune diagnosis and know antibodies that others haven’t even heard of. 😛 Important to see you and take a history too.

Good work!

[KayHimm]

Have you been tested for anti-phospholipid antibodies? Talk to your GP. With your migraines and POTs I would want this information.

And I rarely make suggestions.

[ShonaGreen in reply to KayHimm]

Hi @KayHimm, I’ve just seen the original request from Rheumatology for blood tests whilst waiting for appointment, only had ANA results so far and sounds like some might be tricky but from what I’ve read this looks like a good start!

‘Could you please send bloods for 'scleroderma screen', 'ENA immunoblot, 'antiphospholipid antibodies', immunoglobulin and C3/C4. Ideally 'cryoglobulin' too, but l appreciate it might be tricky to do this in the community.’

[KayHimm]

So the rheumatologist asked for these labs? If so, they are already wanting to rule out a lot based on your GP’s observations. Interesting they requested the anti-phospholipid antibodies. I have Dysautonomia low level CNS involvement. Also atypical migraine.

The rheumatologist understands these tests may need to be done in a different lab. But don’t worry. If your GP can’t them in your community hospital, they will figure it out.

Keep in touch. Hope you get answers.

Kay

[ShonaGreen in reply to KayHimm]

I’ll post an update with any news, thanks for taking the time to respond to me, appreciate it KayHimm

[StriatedCaracara]

Have you had ANCA testing?

[ShonaGreen in reply to StriatedCaracara]

Hi StriatedCaracara I’m not sure, called surgery and they said ENA test had been done and results being reviewed by GP, don’t know if/what other tests have been done too but will hopefully have some news soon.

[ShonaGreen]

Hi, ENA and DsDNA test results are negative. Not sure if they’re doing the other tests requested now. I’m worried that negative results will likely mean that won’t get appointment for Rheumatology now 🥹