... Hi & welcome! I'm sorry you're having issues & are starting the 'ole diagnostic two-step. This dance can last awhile, unfortunately! I can only speak from my own experience with my own labs, but my rheum seems to pretty much ignore values that aren't literally flagged high. *If* your rheum thinks similarly, this would mean only ANA and anti-La... But I believe people can have... (3 replies)
... nysue, oops, silly me, I just assumed NYS, but I think living in Cleveland gives you a big advantage, given its highly regarded medical facilities.
Re: B12, my lowest was a little lower than your 244, and my Vit D dropped to 10 or so. In those years, I had so much neuro-like tingling and weakness that I suspected MS. Once I was dx'ed with lupus, started Plaquenil, and... (27 replies)
... 1. No ulcers in my nose (yet!)
2. I have always thought that my skin reacted normally to sun (BURN) and sore for ages. My face always has a pinkish tinge across my nose and on both sides of my nose No where else to I have this. When I say always, it's more apparent when I'm warm.
3. I asked my rheum whether I tested my ANA was centromere antibody positive or just... (73 replies)
... Yes it is possible to have lupus with a negative ANA, especially early in course. ... (1 replies)
... feeling, sometimes it's itchy. The areas where I feel soreness are the more affected by loss and you can see lots of scalp. I'm going to see a dermatologist in early Feb and will hopefully have a biopsy done to see if we can figure out what we're dealing with. ... (73 replies)
... me. I am very sorry for your miscarriages. This is one thing that I haven't had, though I never fell pregnant easily. I suppose I could have "miscarried" very early on as my periods were never regular, but I never suffered a known loss like you. ... (73 replies)
... Many of my symptoms over the last year have confused my doctors, and you actually named a few of them. MS was ruled out early on, which made the neuro issues even more puzzling. ... (73 replies)
... GYN before you decide to get pregnant so you know in advance what the risks are to you and to your baby if you do have lupus that is seronegative at this point. That way you make an informed decision with all the facts. ... (9 replies)
... I am on Placquenil, Methotrexate, Prednisone and an IV biologic, Symponi right now. Have been trying many biologics with little success so far. This one is too early to tell if it is going to help. I am curious about this autoimmune protocol diet, which I have not heard of. ... (13 replies)
... (8 replies)
... at least considering this, since it can involve GI symptoms. It took me 10 years to get diagnosed even with many obvious symptoms of lupus, so starting a search early is in your best interest. ... (8 replies)
... Also, it's important to know that lupus isn't "progressive". ... (8 replies)
... Hi everyone, new here! I've been reading these boards for a few months but I've been feeling kind of alone since meeting with my rheum and I thought it might be helpful to talk with other people who understand what I'm going through. Even though I have a wonderful support system with my family and boyfriend, I'm sure it's hard for them to fully grasp how I feel. A little... (5 replies)
... Hi. There's a "sticky post" (permanent info post) on skin problems in lupus. (Stickies are right above the user threads.) Do any sound like your splotches? What are yours like? What color? Are they round? Solid or targetlike? Raised or flat? Do they sting, itch, burn? Scale (flake)? Do they fade, then brand-new ones appear? If any have faded, did those leave scars or... (21 replies)
... early lupus are quite hard to differentiate. Since you have swollen hands, it kind of makes sense to me that a dr. ... (14 replies)
... organ issues or joint pain. I have seen two rheumatologists now, and they both agree on the wait and see approach since I don't fulfill all the ACR criteria for lupus or scleraderma. And I, fortunately, still feel fine enough to jog and hike frequently. But the docs are testing my blood frequently for any changes. ... (11 replies)
... You would probably be on a very low dose Prednisone. I took really high doses of Prednisone for 13 years for severe asthma, now my asthma is doing better and I only take 5 mg of Prednisone for my lupus and scleraderma as opposed to 60mg - 80 mg for my asthma.
I know it sound scarey to have to start Prednisone being a steriod and all that you hear about it. I felt the same... (11 replies)
... nil. I was disappointed when I asked her about people going into remission. She made it sound like a miracle if that would happen. I have two friends who have lupus who went into remission though. But I don't know the specific type they have. That's great that you have a teaching hospital to go to in Boston. ... (11 replies)
... Vee, you have no idea how helpful you've been. Thanks for the great info. about facial rashes.
As far as my lung situation, I had hilar adenopathy that finally resolved on its own. None of my docs know for sure what was/is in my lungs because we decided against invasive thoracoscopy surgery. And because my lung function tests came out above average, we took a wait and... (11 replies)
... AJ, hi. I've read that testing facial rashes is less straightforward, as your rheumie stated. First off, it's your face, which is probably harder to biopsy. Then there's the cosmetic consideration (scarring) to consider. And if the dr. chooses to biopsy some OTHER area (i.e., a lupus band test, done on nonlesional skin), I think results there are positive in a much lower... (11 replies)