Sorry for all the questions, but is there a difference between anti ds dna and dna antibodies, native?? I thought they were the same thing but just got my labs back and saw where both tests were ordered and my native was high. First time I've heard about native dna.
At my rheumy appointments, I am always given a questionnaire that asks, "how long does your joint stiffness last in the morning?" The selection of answers are anywhere between less than 15 minutes to a couple hours. I never know how to answer that question because for me, joint stiffness lasts all day - any time a joint is inactive for 10 minutes or so, it becomes stiff. I feel like I have to break the joints free each time I move - especially the hands and feet. In fact my feet make popping sounds that can be heard across a room. Once I break them free they are fine until I stop moving.
Is this kind of constant stiffness normal for lupus? Whenever I google my symptoms I get RA information. And while I also have Sjogrens and Raynauds, my rheumy hasn't mentioned RA...
I have kind of a odd medical question about bruises. Has anyone out there had a problem with reoccurring bruises? I realize we all bump into things and forget about it and a bruise appears, but I have had a black bruise under my upper right arm - not a area that comes in contact with anything but my body. I will get it and over a few weeks it will fade away and then a month or more will pass with nothing and then it reappears in the EXACT same spot - it's been doing this for around 2 years or so.
I've racked my brain trying to figure out how I can hurt it in that exact spot so bad that I get a quarter/half dollar size black /dark purple bruise...just such a odd place...
Is this a weird lupus thing? I haven't mentioned it to any of my doctors because it's just a bruise but I do find it weird...
Thank you for your insight! I will definitely talk with my rheumy at my next appointment about my options....why are lupus choices always the equivalent of "which do I want to swallow gasoline or turpentine" ??? Sigh.
I have a question concerning the use of plaquenil. I have always been on 400mg a day without any complications for around 10 or more years. I see a ophthalmologist every 6 months for a check-up.
At the last 2 eye exams, my ophthalmologist has insisted I'm on too high a dose for too long of time and that I am greatly risking my eyesight - even though he has seen nothing at this time that would indicate a problem. He warned that by the time he would be able to see a problem, it would be too late to reverse and that even if I stopped plaquenil at the first sign of trouble, it would continue to harm my eyes for several months. Any damage would be permanent.
I told this concern to my rheumy who disagreed, but lowered my dose to 300mg because I was concerned. She also increased my methotrexate. As soon as I lowered the dose my malar rash has become a problem - it's horrible, actually - people are always staring at me. Make-up doesn't even begin to cover this mess.
So, I go out and buy the latest edition of "The Lupus Book" by Dr. Wallace who states his pet peeve is ophthalmologists scaring lupus patients about the dangers of plaq. He says it's very rare and if caught early it's reversible.
Now I'm torn....which to believe??? I would love to go back to my higher dose but I also know that the book - while the latest edition - is a couple years old and info. changes.
What do you tell your patients about the use of plaq?
Before you fire your rheumy, please note that just because you have a positive ANA does not mean you have lupus. There are over 100 autoimmune diseases that can cause positive ANAs with RA being the most common autoimmune disease. Not too mention there are perfectly healthy people who sometimes test positive. Unfortunately, there is no single test to confirm or deny a dx of lupus, which is why it can be hard to diagnosis.
Please understand that symptoms like joint pain and fatigue can be caused by several diseases - not just lupus. Lupus is dx by using a set of 11 criteria - if you have four of the criteria, you are believed to have lupus.
My suggestion would be to print off the list and circle the ones you believe you meet and take the list in to discuss it with your rheumy.
Over the years, I have noticed that rheumy's - compared to their other peers - are reluctant to dx ...they seem to see everything as shades of grey.
As a person who took years to get a dx of lupus, I know how frustrating that can be.
Also note, it can take 6 months to see the full effect of plaquenil. So keep taking it.
I hope you get answers soon and more importantly relief from all your symptoms.
Hang in there!