... 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)
... others, which can so closely resemble early lupus... and THOSE have their OWN convoluted diagnostic criteria. ... (7 replies)
... Low levels of ANA can occur in MCTD, where they may be higher in pure lupus. Some people with MCTD get RA as well. So it is often hard to distinguish, especially early on. To clarify your thinking, I would get copies of your labs, research MCTD, look at all the symptoms you've had, and see where you fit. ... (3 replies)
... I'm just a patient, so please read in that light!
I too suspect that 1:1280 is substantially higher than the elevation seen in people whose ANA elevates due only to a family tendency. You could ask what numbers are typical for that scenario.
You could ask if a positive ANA can *precede* additional symptoms and the appearance of ANA "subtypes". (I've read it can.)
You... (3 replies)
... Were you warned that most people with lupus must make serious changes re UV, such as avoiding midday sun, wearing sunblock with high SPF, hats with brims, long leggings, and long sleeves? ... (5 replies)
... of certain cells seen in lupus. I'm so tired at the minute. my joint pain just fleets around my body coming and going. have you heard of anyone curing or helping lupus with diet changes in the early stages? ... (12 replies)
... with my other symptoms the malar rash certainly makes sense. i've read many posts about people being negative early on in the course of their disease. ... (12 replies)
... are opening my eyes to all the intricacies that goes with lupus diagnosis. ... (24 replies)
... Took 24 yrs to get a firm diagnosis, but back in the early 1980s was the dark ages for autoimmune diseases. Keeping this in mind, I would recommend getting an ANCA run. ... (5 replies)
... at a very low level. That is certainly longer than usual, but it is not unusual for people early on especially to lack the classic lab evidence. As the disorder evolves, it becomes more likely to show up somewhere, sometimes only intermittently. ... (12 replies)
... Sockie, the medical term for sausage-like fingers is dactylitis. (And no, I didn't remember, I only remembered the "sausage" part. :D) It's apparently seen in only several conditions; psoriatic arthritis and sarcoidosis are two that I saw mentioned.
... which brings up an interesting concept re: AB tests. In the presence of certain symptoms, when repeated tests can't turn... (18 replies)
... Interestingly, waaaaay back, when I was in my early teens, I had horrendously heavy and painful periods that lasted weeks. ... (5 replies)
... were aware they had mono or not. The EBV infection is considered to be a possible trigger for the development of lupus. So I hope that is helpful and you get the lupus vs. chronic EBV question settled with your Dr. If you had a recent mono infection, then I would say these results are normal for recent infection. ... (1 replies)
... Hi and welcome! Glad you found us. Of course we want hubby to "get it", but getting it can take years of practice, I think. My husband has evolved over time, and other women in my age bracket speak similarly about their own marriages. Early on, my husband's way of dealing with EVERYTHING (not just my health) was NOT to deal. He huffed, he paced, he shut down. He's not the... (2 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)