lupus and whether I really do/did have it!

I have had two doctors tell me that I have lupus.  One of the doctors, a rheumatologist, told me I had lupus and treated me for over two years.  I took plaquenil and aleve.  She is a very well respected doctor.  My lab tests never showed an elevated sed rate, or c-reactive protein.  My complement proteins were low once only.  I am rheumatoid factor negative.  However, I have had many clinical signs and symptoms of lupus (mouth and nose sores, history of pleuritis, seizures, pericarditis, hair loss and scalp ulcers, synovitis, fatigue, photosensitivity).  She stated that she does not think that I have lupus based upon the fact that my main CURRENT symptoms have been synovitis, fatigue and mucosal ulcers.  My ANA has always been low titer positive (1:160 or less).  
This year, for the first time, my ANA was negative!  
The symptoms come and go.  I have not been able to work full time however as a result of fatigue and am on lamictal to prevent seizures.  
The doctor that was treating me has retired.  I haven't gotten a new rheumatologist.  
I know lupus is so different from person to person, and a "diagnosis" is not the answer to having these symptoms.  Does lupus go into complete remission?  Can it be cured?  Why is my ANA now negative, and does this mean I never had lupus in the first place?

[karajo]

Hi and welcome to the MedHelp Lupus forum.

For starters, you don't have to even have an elevated ANA to get a lupus diagnosis.  Most people have it, and even those who don't, usually eventually have an elevated ANA.  There are 11 criteria and an elevated is just one of the 11.  One must have at least 4 out of the 11.

Here is a list of the 11: (I put an * beside the symptoms you mentioned)
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash *
4. oral and nose ulcers *
5. arthritis
6. serositis - inflamation (inflammation) of the lining of the lung or heart *
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis *
9. anemia or low white blood countor lymphopenia or low platelet count
10. positive ANA *
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
fever
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out *
fatigue
muscle pain and weakness
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
abdominal pain
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
...to name a few

YOU HAVE LISTED 5 OUT OF THE 11 CRITERIA FOR LUPUS.
On a personal note, my ANA has goe from 160 to 360 to 640 to neg, to 2,560.  Just because it is negetive doesn't necessarily mean you "don't" have lupus or it has gone into remission.  As a matter of fact, when my test results were neg, I was having a terrible flare.  But when it was 2,560, I had spent some time in the sun prior to the test.  

Is your dr. now saying you never had lupus because of this neg. result?  I refer to "The Lupus Book" by Dr. Wallace page 167 & 170.  He goes into detail about negetive ANA lupus.  Many wil tell you that just because a person has a negetive ANA does not mean they do not have lupus, it just means it's unlikely.  But you have had a positive ANA, it's just been in a low titer.  I know people who have been dx from seizures and someone who was dx because of pericarditis.  Both had organ involving lupus. I'm thankful that my situation has not ever involved my major organs.

The only other thing that would probably affect the synovitis is RA.  But I would not think you would have the mouth sores, pluerisy, seizures, etc with that.  

I encourage you to get some reading material about lupus.  Go to your library and see if they have any info on it.  Some dr. are willing to read internet articles, especially if they come from emedicne or a reputable place.  Be sure and highlight the parts you want them to read.  That way they don't feel pressured to read the whole thing in their busy lives.  We live in such a wonderful information world at our finger tips.

God bless, praying for God's wisdom as you go through this.
~Kara

[PiperW]

I agree with Kara that I've had ANA numbers all over the place and when it was neg I was in a flare and when it was highest I felt the best. So weird. My Dr. assured me that having a neg ANA doesn't mean a thing. In fact, I'm not even sure why they keep testing it, now that I have my DX.

And, yes, I think Lupus can go into remission but you are always at risk of it coming back someday. I have had long periods of no symptoms at all. I still "have" Lupus, it's just inactive.

You need to be treated constantly. Lupus never "goes away." You have it the rest of your life. You need to find the right doctors and get back to treatment before you have an awful flare or something major.

[calicogabby]

Dear Kara and PiperW,
Thank you for your replies.  I appreciate your thoughts.  
Although I have not yet found another rheumatologist, I know that I need to do so.  I have been fortunate that my lupus has not been severe, but it has been disabling in terms of severe fatigue and difficult to treat depression.  I am under the care of a good neurologist and psychologist.  I just have not yet made the effort to find another rheumy.
My lab tests were followed very closely.  It seems that the completely negative sed rates and crp's led my doctor to conclude that lupus was unlikely.  She was aware that I was under treatment for depression and temporal lobe epilepsy (which my neuro doc thinks might be connected to autoimmune issues).  Despite the mucosal and scalp ulcers, persistent synovitis, rash, microhematuria...she concluded that it wasn't likely that the symptoms I had were a result of lupus.  
I am an RN, and I should "know better," but honestly, it is very difficult to be objective about one's own problems.  I have learned to limp along with feeling ill all of the time, but it is getting worse bit by bit.  
It is unfair to my husband, friends and coworkers.  
I plan to get more research done and get it organized to take along.
It really does help to share thoughts and concerns this way :)
Will keep you both in my prayers, and Happy Holidays !
Thank you both!!
Linda >^..^<
                

[PiperW]

I have always had a negative Sed Rate yet my doc maintains I have Lupus. It's only one piece of a very big puzzle, with missing pieces. You need a new Rhumey.