I was diagnosed with UCTD or mild Lupus. I have had positive ANA since i was 18 w/o symptoms and was told I was probably part of the normal population that has elevated ANA. Mine was 1:640. I was totally happy with that answer, got tested every year with the same results and didn't think twice about it. The only special thing I needed to do was take baby aspirin while pregnant so I wouldn't miscarry like I had once prior. Fast forward to 35 yrs. of age. I have developed ongoing low grade fevers, dry eyes, bone and joint pain, a sensitivity to sun-light and facial rash and some problems with my kidneys as well as extreme fatigue. My doctor once again orders lab work and once again my ANA is elevated. I am put on Plaquinil and start to feel a lot better. I am given the diagnosis of mild Lupus or UCTD at 40. Most recently symptoms have become a bit worse and include neuropathy BUT for the first time in 20 years my ANA is normal. What is going on? I don't know what to make of this.
I was diagnosed with Systemic Lupus 9 years ago, then a couple of years ago had a doctor tell me that I never should have been diagnosed with SLE. I'm definitely allergic to the sun. The plaquenil eases my arthritic symptoms and controls most of the sun allergy.
I refer to the fatigue as Gumby after 60 seconds in the microwave! It is so much more than being tired! Lupus is aggravated by the changes in our hormone levels so it's necessary to keep your energy up while you have it. Exercise when you can, so that you have the energy later when you have bouts of fatigue. I've found Aleve to be a wonderful little helper easing the joint aching.
I don't like the brain-fog I get, but I've learned to deal with it.
Lupus has such a plethora of symptoms, many doctors don't know how to treat it using more of a trial and error approach.
I believe with the plaquenil you'll be fine. Many people with Discoid Lupus don't take the plaquenil during the winter months and do just fine. Take Care~
hey I read your post on ana's I have/had SLE lupus for most of my life officially diagnosed a couple years ago and then I move the new doc wanted to update my blood work and everything came back normal!! the last one I had had done came back as 2300. So I had my doc redo the tests and they came back normal again!. It one thing to be told you'll die slow and painfully then except it andlead a happy life but it's another to have it flipped back again!! I just feel like all of the pain was just something I made up or somthing or a horrible nightmare.... I am just stunned that I might have had a miricale and I feel extremely blessed... but now I fear when I least expect it and I'm truley fulfilled and being extremely successful it'll be back for me....
have you found an answer yet?? Sorry for venting I guess I just needed it out of my system. hope all is well for you
FYI, a person with Lupus can have a negative ANA result;
one example with the URL;
Glojer07-27-2005, 12:47 PM
Welcome Jackie Lu. Yes I have had a positive Ana test in 2003 1:320 and just this year had two negative Ana, one while on plaquenil and one after being off plaquenil for 3weeks. Maybe if you are on medication that is what is causing the ana to be negative. About 5weeks off the plaquenil, although I did not have a new ana test done, I would almost guarantee it would have been positive because my joints all were hurting and some were swollen and I felt the same as I did in 2003 when the first test was done. My rhuemy just prescribed something over the phone so I did not have the Ana done again. Good Luck!
I was told in 1995 that my ANA was just under the mark by one point and that I needed to be monitored for LUPUS. I was tested for every autoimmune desease they could think of, even diabetes, but nothing. I have had one problem after another since the early 80's even in my feet which would cramp up at night. The swelling started and I could not get rid of it. I was told by several doctors these things were all in my head. In 2005, suddenly I developed diabetes. It makes me wonder if what I have been going through since the early 1980's has anything to do with the sudden development of diabetes.
I was diagnosed with borderline SLE/Rheumotoid Arthritis three years ago. I am a lot better now except for the pain in my joints and the sun sensativity. I just moved to Southern California and I just got a negative ANA too. The doctor was completly dismisive of my past symptoms and rushed me out of her office. I decided to change my doctor again, hopefully I'll have better luck. I am just tiered of being anxious that the symptoms will come back and I'll have a doctor that doesn't know what they are doing. Good luck to all!
Yes, the ANA levels can fluctuate and even be negative. A negative ANA doesn't rule out lupus, nor does a positive ANA confirm lupus. I know that sound contridictory, but a lupus dx comes from the symptoms. An elevated ANA is one of the 11 criteria for a lupus dx. I encourage you to educate yourself and read up on this crazy disease. There is a book called "The Lupus Bood" by Dr. Wallce. Sometimes if you take something reputable to your dr., they are more receptive to receive it. Another respected peice of info that drs. will receive from is places like webMD and medicine net. But try not to overwhelm them, highlight the area you want them to read so they can get your drift in a quick way.
The same thing happened to my daughter. Her Rheumy explained to me that Plaquenil is a disease-modifying drug and its not unusual to see blood work come back practically normal when someone has been on it a while. It just means the medication is doing its job. Since going on plaqeunil, my daughter only shows a low C4 and borderline DS-dna. This is the first time since she's 8 (She's 14 now) that she doesn't have positive ANA, low complements, anemia, and abnormal blood factors. Plaquenil is wonderful! :)
I am concerned after reading all the comments posted. Last year my dermatologist did a biopsy of recurrent patches of dry, red skin that seemed to appear after sun exposure or became worse after the exposure. It was not the typical butterfly rash. He said the test was not conclusive for discoid lupus but felt that was the diagnosis even though ANA negative. He started me on Plaquenil 200 mg twice a day. I stopped the medicice in January and symptoms were better until May when I was on vacation at a lake in Tn. I started the medicine back immediately and followed up with my derm 2 weeks later. He was concerned and sent me to Rheum thinking that I had Lupus. I have had severe joint pain but only in my knees; so bad I cry at night. The Rheum ordered labs and placed me on Lyica for the pain, which does help. The Rheum MD just called telling me my labs were normal and my ANA was just under 1.6 & Vit D 34 (abn less 30) so he felt I did not have Lupus but to stay on the Lyrica. He said my other labs were also normal. My concern is that I have been on Plaquenil for a while now, can it cause a false negative ANA? Basically because of the meds is there a possibility that my labs could be normal due to this?
I also have lupus and to me it is the most painfull thing you can have.It's weird how it attack different things on everyday. Some days its my kidneys or its in my muscles and joints but the worse is when it effects the heart or the lungs..Is there a cure ? Im all ready getting emmunied to my pain meds..whats next...dialasis?
I was told last year that I had lupus and. But none of the doctors in my city take my insurance for. Me to be scene and I fill like it getbad I don't sleep much at night due to the pain in my legs and the burning in my arms and hands and feet go numb ! Along with haven heart failure and. Hypertention this is not the way for me to liive! Not being treated for this diease that taken. Over. My life
I was diagnosed with Systemic Lupus in 2000. For about a year I went thrum so many painful symptoms. So today I get back extensive blood tests and my doctor tells me I do not have anything abnormal in my blood results and I can discontinue taking Plaquenil. I AM VERY SCARED!
Ive had SLE since I was a child, now 34. Ive had the extreme paine in my joints, hands and feet especially bad, shocking joint pain! I have found cutting out sugar completely, as in refined carbs also, completely cured my aches and pains! its like a miracle! Also, fasting for a few days cures the pain amazingly! Google fasting and lupus, some recent studies have proved it can cure lupus. : ) PLEASE TRY IT if you are bad,,, just to see for yourselves! It def works for me!
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