APS and lupus symptoms.

[Tinythepanda]

Hello all,

It's been a while since I last posted however i read almost every post and found the information so helpful.

I was finally diagnosed as having the syndrome and not just the antibodies in October. A total of 18 months after onset after an mri showed some damage. My APS specialist confirmed between 6-10 Tia's and started me on warfarin with an INR 3-4. This has greatly helped my symptoms especially my migraines.

The only thing that is still a problem is I have a few other symptoms. Joint pain, fatigue, hair loss, oral ulcers and more recently raynauds.

My amazing rheumy sees me currently every 3 months and I can call in between them if I have Any new symptoms or concerns.

Every appointment she runs a full blood panel checking for lupus each time. I test negative each time although show high levels of inflammation.

More recently I have developed a rash similar to a malar rash. In light of this she has retested for lupus again.

Has anyone here been given a diagnosis and then gone on to develop lupus? And is it unusual to regularly test negative then positive? I'm wondering whether all my odd aches and pains etc could be atributed to APS and I'm getting worked up about nothing.

Thanks in advance for Any replies. My results fingers crossed should be back in about 2 weeks.

[MaryF Administrator]

Hi, glad to hear you are making such great progress with diagnosis and support with your helpful Rheumatologist, a lot of us do have Lupus, I tested sero negative for this for decades, so it would appear your symptoms are making your doctor suspect this, do keep us posted. MaryF

[Bell990]

If you google it you will find many articles on seronegative lupus. Some go on to develop lupus and some don't. I also have every symptom of lupus but am seronegative. I test positive for rheumatoid arthritis but do not have it. My current rheumatologist is going to try some lupus treatments for me since nothing else has worked for me. Another dr that I saw in the past called this Mixed Connective Tissue Disorder. I don't think it's rare and I think there are others in the same boat on this website.