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I dont have Lupus? What?

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Posted 3/6/2014 9:20 PM (GMT -5)
So I've had a few ana results that were positive and today my rheumy tells me that my ana is negative and that I dont have lupus yet I have to stay on Plaquenil...So what does that mean? I never had lupus? I'm so confused! She never really explained it to me and just kept telling me I dont have lupus but stay on my meds. UGH!!

Can one of you please explain it to me? Thank you in advance.

PS:
Thank God if I am in the clear of this awful disease!!!
Posted 3/6/2014 9:41 PM (GMT -5)
I wonder if she ment yours went quiet?
Posted 3/6/2014 9:51 PM (GMT -5)
Oh wow that's probably right...if she doesn't want me off the meds then it's "quiet"!! Sounds right!
Posted 3/7/2014 12:37 AM (GMT -5)
Like any of the other symptoms of Lupus (yes, for us positive ANA is a symptom), coming and going doesn't change the diagnosis. The Dr shouldn't have said "you don't have lupus" -- Lupus doesn't go away. And it's not really called "quiet" unless you are med-free and symptom-free. Sounds like some mis-communication was happening.

Did you ask your Dr any questions? It's important to be on equal footing with the Drs, so you can ask a straight-out question and get a straight-out answer.

In any case, your path is clear.....keep taking those meds. And I hope all your symptoms are minor, not just your ANA.

PS. Somehow reading back that doesn't seem to make sense, but I don't know how to re-write it. Too tired tonight, I guess.
Posted 3/7/2014 7:03 AM (GMT -5)
It made sense to me Lynnwood but I'm in the same boat hahaha, words and sentences just aren't looking right!

Snowcone, I saw my rheumy yesterday and she said while I don't have a slam dunk diagnosis of lupus, it appears to her that I have it. She has me on plaquenil. This may be the same scenario as yours.

My disease activity isn't quiet, it just isn't as obvious as she would like in the bloodwork so we are calling it UCTD for now. From what I gather, this means that a connective tissue disease is certainly present although it hasn't yet become certain whether it is RA, Lupus or something else. It may never progress which would be a good thing but still needs treatment and exists. Some symptoms and results point to one or more connective tissue disease but not as many boxes are ticked off as the doctor would prefer for a specific diagnosis.

As Lynnwood said, the important thing is that you are getting treatment!

It isn't all in your head, you are not a hypochondriac. Even if it doesn't have the label of lupus on it there is something going on and your doctor is addressing it. So that is a good thing :)

My rheumy too said she thought it wasn't lupus on my last visit and then yesterday said it likely was but still wouldn't call it lupus. It's tricky stuff and I think our doc's want to be certain before they label it.

I hope that helps!

Joie :)
Posted 3/8/2014 10:02 AM (GMT 0)
I've been dealing with the yes/no thing with lupus for about 8 years. Multiple positive and negative ANAs. My insurance won't pay for the test again. I have all symptoms of lupus with others to boot that my doc said could be lupus also. Fibromyalgia, hypothyroidism that hasn't been checked for a while. 8 years ago I was told that it was low, but not low enough for meds. My husband goes to the same doc and his level wasn't even as low as mine, but he was put on the medication. I don't do anything or go anywhere now because I now either pass out or have some form of narcolepsy. I was at the hospital with my son having a check up after a bone marrow transplant. I kept passing out or falling asleep, even while waling and talking with the doctor or my son. It was so embarrassing, especially to my son. It's happened at home too frequently. Twice in my bathroom where I hit the slate tile and broke all of my front teeth. Between having braces that took enamel off of my teeth and the constant dry mouth, and the slate tile; my teeth didn't stand a chance. I was also very sick for about three weeks and had nobody to help me. My long hair matted up very bad! I combed and brushed my hair as long as it could go and cut my hair just above the matts. Not pretty, but will grow out faster. My best friend sent me a beautiful wig, I just have no idea how to put a wig on. Between passing out with no notice, my horrible looking teeth and my hair; going out hasn't been something I'm willing to do. Only to my doc, then pharmacy and straight home. With my mother driving. I'm not about to get behind the wheel of my own car! I need to figure out the specialists I need to see at UMAS. I forgot to mention weight gain as another embarrassing reason to go out. I barely eat anything, but I get no exercise(the pain is to great)! What should I do? Right now? My insurance is in state only so my mother has to drive me twice as far to a city that a city that is twice as large.
Posted 3/8/2014 5:32 AM (GMT -5)
Thank you all for the information. The thing is that I used to go to another rheumy and he diagnosed my with lupus. I had it primarily in my skin (rashes and my I felt bruised to the touch.) I felt like a number at this clinic and so I went to another. I love my rheumy but as of late she is so busy and I feel she has to rush because she is an hour and half behind. So I'm thinking I wanna go back to my original rheumatologist.

I've be diagnosed for 21/2 years with Lupus and being treated for it with steroids and plaquenil by my 1st rheumy. So when the ANA came back negative and she had never done this test she was amazed and that's when she stated that she wasn't the original dr. that dx'd me with Lupus so this is why she said I didn't have it. But like I said she didn't take me off my meds and said that if I were to go off them Lupus would come back. But just the fact that she said I don't have it made me confused...I know it goes quiet and is never gone so why would she say I DONT HAVE IT????? \

Oh well I guess I wait and see..Thank you all so much for your response. I love this site because I don't feel alone. God bless you all and have great day. Kiss Kiss
Posted 3/8/2014 7:11 AM (GMT -5)
Ohhh, I didn't realize Snowcone. Sorry!

Yes, her way of saying things is very confusing. Lupus doesn't just go away. I think her wording maybe just wasn't right?
Posted 3/8/2014 11:48 AM (GMT -5)
Treating lupus is long term and does not end just because clinical symptoms subside. ANA can be present when you have lupus but it is not a direct lupus test. Some have a positive ANA but do not have lupus. Treating any autoimmune disease is quite different from treating a bacterial infection for instance. Take these antibiotics for 10 days and you will be ok. Not so with an AI disease. Some patients do go into remission and can come off meds. There are 3 scenarios for AI disease. Polycyclic (series of flares and remissions), chronic (always in some stage of flare), and monocyclic (big flare and then remission).

The first 2 types are most common with lupus. If treatment is applied only when symptoms are present or severe your immune system will not be suppressed long enough to go into a longer remission. It is like a yo-yo effect. To have a chance of being successful treatment has to be long term and usually measured in years. I have been in remission with no clinical symptoms or positive labs for lupus or polymyositis for over 8 years but have only been off all controlling meds for about 3. It appears that I am in permanent remission but only time will tell if that is true or not. It takes times to get an immune system suppressed to reduce and stop clinical symptoms and even longer for it to normalize which does not happen in every case.

As others have said, lupus is our friend for life. I am lucky to be in remission but there are no guarantees because lupus is not curable only treatable. Here's hoping that my immune system changes are permanent.

Bill
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