My Ana is 1:640 all other auto immune and skin biopsys are negative so do I have lupus or not.

[Mildred55]

The rash appears on my legs and arms and is extremely itchy.

[dgleds]

hmmm hard to say...

mine was 1:320 finely speckled and homogenous...and I had to meet 4/11 criteria...I never had rashes, just joint stuff..tiredness...................All my other tests were negative too, except crp inflammation test..

[Hidden]

I saw a Lupus/ CT specialist recently and he explained that in his opinion my rashes were an allergic response to meds or other things rather than Lupus. The reason he gave me was that I'm 51 post menopausal and at my age and stage most people's Lupus would be improving with post meno hormones whereas whatever I have is definitely worsening. He said that in all likelihood I would have some kidney or lung involvement by now too. My ANA is equivocal as are my recent skin biopsies. I do however have RA with secondary Raynauds and Sjogrens.

I don't know if this helps you at all and he could be wrong about me because there are definitely other things happening but they may be generally autoimmune related or completely seperate pathologies rather than Lupus.

Twitchy

[dgleds in reply to Hidden]

Odd...I was diagnosed with lupus at 56 and a half...3 years after menopause was done...

[Hidden in reply to dgleds]

Yes someone from this community told me this happens - baffled - he even wrote it in his letter to my GP. Do you have lung or kidney involvement perhaps and did they think you had lupus during your child bearing years but only diagnosed at 56? Sorry to be nosy. I liked this professor - but even specialists can get it wrong and there are always exceptions to the rules with autoimmune diseases. But then he specialises in the rule breakers and felt my RA was a certainty - which I still struggle with to be honest.

[dgleds in reply to Hidden]

Nope Im suppose to have mild lupus...and I think it might have shown up at 52 and a half..Well thats the first time I had an ANA test be positive..I was checked for another thing of a 2 part test that was positive, the other negative...No one was concerned at all about it being positive then. My rhumetoligist asked me about my pregnancy with my daughter...I had a great pregnancy..felt really good and healthy, and delieverd my daughter at 33 years old. I did aerobics my whole pregnancy and was really active..not tired at all....When I was about 41 I became hypothyroid...but its not too bad. About menopause (53) time my thyroid bounced around a bit, and that also seems to be the time the lupus thing was happening...I got diagnosed last year at 56 and a half...I was in shock...It seems to be like an arthritic type thing for me, and I can get dog tired ...and brain fog. At the time I seem to have gotten lupus, I had incredible "stress" looking after my Mom who was dying....single parenting, "menopause" just to name a few things going on....and my Gran had rhumetoid arthritis, so there is the 5%" hereditary factor...My Rhumetologist said the recepie for lupus seems to be stress, hormones and 5% hereditary...

[sazzyb in reply to Hidden]

Hi Twitchy, after reading some of your posts I think he's definitely wrong about you!

[Purpletop]

Once ANA goes past the 1:320 titre, which yours did, an autoimmune disease is likely. Whether that's lupus or something else, will depend on specific symptoms.

Just because blood tests don't show auto antibodies, it doesn't mean you don't have an autoimmune disease. I'm seronegative too - my ANA flips between 1:320 and 1:640 but no other blood indication and I'm diagnosed with lupus, mainly based on symptoms and positive ANA.

[dgleds]

Purpletop-I didn't know that was same with you...That's the exact same for me. Few more small symptoms seem to be showing up and disappearing...The latest is painful thumbs...yuk!

[Purpletop in reply to dgleds]

My latest are painful feet arches (as in throbbing). And on and off occurrence of something in my throat - it doesn't stop me swallowing but it's like my throat is swollen inside. It goes away after few hours and it isn't every day. It's not connected to food either (thought it's something to do with acid reflux but it comes on haphazardly). Weird.

[dgleds in reply to Purpletop]

Yes I know what you mean...stuff kind of crops up for a bit, then disappears...

[Hidden in reply to Purpletop]

I'm like both of you with my RA - it doesn't seem to affect my joints as much now - at first I couldn't drive or work because of hands and wrists playing fractured and had to get up and down our stairs sideways like a crab sometimes. It hasn't been like this for ages - the lupus professor said this was thanks to methotrexate.

For the past year my flares have just been that I feel very ill and have weird things like little red blood spots all over my legs (non itchy) or chronic hives around my face and neck. These symptoms that crop up and then disappear are the most challenging because by the time I have an appointment they have either gone away or become the focus of interest at the expense of other things. If I ask about nail changes then I can't ask about dizzy spells or vice versa. Do you both find this too?

[Purpletop in reply to Hidden]

Yes, absolutely, picking and choosing what to discuss in a short appointment is tricky. I am very disciplined when I go in. I start with improvements since last time, then move to persistent new symptoms and discuss causes and next steps, including any referrals I think I need to other specialists, then I close with random but non-persistent symptoms that I want on his radar until next time. And I keep the discussion short and to the point, to avoid delays. The prep for the appointment takes some time because I want to be able to tell him exactly how often I had a particular symptom, whether there has been a particular trigger to it, whether it responded to any medication, etc - that takes a lot of going back through my symptoms diary and a lot of "have I really improved" self-questioning, which with the sieve-memory I now posses, isn't always straightforward.

[dgleds]

if I have to go out in the noonish sun (I don't have a car)...and lately its been moderately warm..holy moly I feel like a gingerbread boy when I walk(very stiff)...But if I go out in the evening and walk Im ok...So the sun really makes me feel stiff ,and zaps the life out of me. I cant sit inside forever, because it makes me feel like a bat waiting for the night time to come...Ive never had that before...How bout you ladies..... Also if Im tired I notice joint things crop up...and definitely this hot sunny week has made me more achey...

[Hidden]

I don't know dgleds - I'm on my way back from a hot sunny Paris to an overcast cool UK and I have to say that where I used to fear heat and sunshine I now yearn for it. I have Raynauds and my body seems to lap up warmth and I have a great need of vitamin D. I do stay out of the sun's rays because of being very fair and prone to Rosacea and also because I take methotrexate. So I do recognise the bat syndrome but it seems to have upped and left me now in my early 50s!

Twitchy