Thanks for the boards, y'all are so helpful!
Saw GP in Dec for joint pain, major fatigue, always felt like I was about to come down with the flu. I'd been feeling bad on and off for at least a year or two and was concerned that it was RA. Tests all came back as though I was just fine. She sent me home with amitriptyline and an NSAID which didn't do jack. Came back in Jan. when my hands were hurting and swollen, could not do anything without pain. Hip joints also very sore on the inside of my hip.
She referred me to Dr L (rheum) who ordered a bunch more tests. (btw, I like her very much and believe that she is competent and caring but a straight shooter) ANA came back at 1:1280 and low vitamin D. Been on the celiac diet for 2+ years so ruled that out as cause.
She gave me a preliminary dx of lupus on Wed. Mouth ulcers, still a lot of fatigue and joint pain. She ran the anti-whatever tests on Wed. so I should hear back from those by next week, gave me a pamphlet on SLE and a prescription for Plaquenil.

Here's my questions: How am I supposed to feel about this? I'm 35 with 4 kids and my own business. She was very matter of fact about the dx, said that I can expect good quality of life and to not have the major organ involvement. Is that realistic?
Also, I'm white and I have heard that Hispanic and black women who have lupus often have it more severely. Is that really true?

Thanks in advance. I don't want to freak out but I also don't want to live in denial (which is usually my MO, I just suck it up and deal).

Ames
Denver, CO

Dear Ames, Welcome. It IS possible to do well overall, despite maybe some days here & there that won't be as pleasant as you'd like. And it definitely IS possible for many people to have symptoms that are limited to the constitutional & musculoskeletal, but sparing of your major organs.

I've been on Plaquenil for 7 years & have had the worst of my problems basically disappear. But I still have periods of being tired & take NSAID's for frequent joint pain. But compared to how I was? This is VASTLY better.

Are you also taking sun precautions? I know some people aren't photosensitive but that many are (I am, horribly).

I hope you hear from others soon, too. Hang in there! It takes some getting used to, to put it mildly. But as time passes, I hope you can have many days during which lupus barely crosses your mind. Take good care, Vee

Hi,

I also take Plaquenil, been on it about 2 years now. And like Veej, my flares are much less debilitating and last much less time since i've been on plaq. There are so many varying degrees and types of lupus..some just have skin affected, some have musculoskelatal issues, some have major organ involvement. I personally know I have skin & musculoskelatal involvement but am not too sure if I have any mild organ involvement. I do get alot of UTI's..and once thought I got another, went to a walk in med place, they tested my urine, found NO infection, but did find blood & protein. However, back then, they just gave me antibiotics anyway and sent me on my way! THe meds did not help and I became quite sick...but eventually after many months I started feeling better. (This was all before I ever saw a rheumatologist, though). I've also had sporatic chest pains and pain while breathing, but not sure if any of it has to do with lupus. But I can say, that I havent had any of this since i've been on plaquenil....

Either way, if your doc feels it's lupus, it would be best to take the meds she prescribes because they can help alot. Just keep in mind that plaquenil can take many months before you start noticing any difference and it's a safe, long term drug.