Could swelling in random fingers mean Lupus?

[AmandaH]

When I was originally diagnosed with APS 4 years ago, I was told I only have APS, but not Lupus. I have been treated with Coumadin, and have responded fine. 3 months ago, I started having random swelling in one finger on each hand. Could this be the beginning stages of lupus?

[MaryF Administrator]

I know sometimes it is hard to work out where one thing begins and another ends. However my daughter has Systemic Lupus, and passed a test around age five which was ignored at the time, and for years she had fingers that randomly swelled! MaryF x

[Bonnie39]

My fingers get very stiff and swollen. I also have Raynaulds. I am waiting to see exactly where I am on the APS-Lupus spectrum.

[AmandaH]

Thanks ladies! I really appreciate the response. I have positive ANAs and had a massive arterial blood clot 4 years ago, so that is how I was diagnosed with APS. The doctors told me I didn't have lupus but I have this random swelling and it's driving me crazy! My rheum said she would symptomatically diagnose it as lupus, but she doesn't know for sure. Is there any way to know if you have lupus for sure??

[Rob79]

Hi Amanada, it sounds very similar to what I experienced I got a DVT around a year ago and was then diagnosed with APS and Luupus (sle). I do have a very mild form of lupus which only affects the joints in my fingers they randomly swell up and it's very difficult for me to clench my hands and they can become quite painful. I had this problem in my hands for around 10 years before it was found so I would suggest you ask for another blood test. I know take a drug called hydroxychloroquine which has really helped I rarely get any swelling now and apparently its also good for APS.

[AmandaH in reply to Rob79]

Hi Rob,

Thanks so much for this info! I am going to another rheum in two weeks and will absolutely bring it up with them.