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Running Momma

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 #1 
Hi,
I was told I had Sjogrens Syndrome in my early twenties because of blood tests and not symptoms. I never had the Shirmers test or anything, but was told I was a high risk if I wanted to get pregnant.

Fast forward, I'm now 36, have two boys (one three and one 10 mos), and I was told to see the rheumatologist because my SS-A was so high during my pregnancy. I went to the Dr and he said I have mild Lupus and that is it was going to be bad it would have already been bad. I'm extremely active (running a 30k tomorrow) and have just attributed joint pain and muscle aches to lifestyle. I can't distinguish between having two babies and symptoms because yes, I'm tired and achy and lost a lot of hair... but that could be baby related. The Dr said I was healthy, besides having mild Lupus, said I could go on plaquenol at any point I wanted and that was pretty much it. I feel confused. Any advice or words of wisdom??

Oh, and is that true about if it was going to be bad it would have already been bad? Can ANA change? My SS-a has gotten a lot higher and is at 8 right now.

Thank you for your time!
Robinj

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 #2 
I went to the Dr and he said I have mild Lupus and that is it was going to be bad it would have already been bad.

I don't want to be a Debbie Downer, but no doctor can predict the course lupus will take. Saying that is very irresponsible...

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Running Momma

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 #3 
Yeah, I'm just really confused. He said if I wanted to start plaquenol he would see me in two months but otherwise I don't know if I'm even supposed to go back. Aren't you supposed to be monitored when you have Lupus? Not just if you go on the meds?
Robinj

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 #4 
Plaquenil is usually the first line of defense for lupus. You need to be monitored both with and without meds if you have a lupus dx. You need a baseline eye exam before starting Plaquenil and yearly after because in rare instances, it can cause damage to the retina. Did this doctor run any labs? If so, do you know the results?
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
upstater

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 #5 
I was diagnosed with discoid (skin) lupus and "undifferentiated connective tissue disease" and my (3rd) rheumatologist started me on Plaquenil.

From what I understand and have read, the Plaquenil helps with symptoms (skin, fatigue, aches) and also has a protective effect of reducing flares and possibly preventing further progression. I have heard it referred to as as "lupus life insurance" by reputable sites - ie: Johns Hopkins.

It's risk of side effects are low - and to me benefits seem to outweigh those, but everyone makes their own decision. More common complaints are GI related (isn't that a side effect of all meds!). As Robin pointed out - you do want to have your eyes monitored. By an ophthalmologist. My ophthalmologist said he has only seen one case and that was someone who took an 800mg dose daily for over 20 years. Not to say it can't happen. But it's not common.

upstater

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 #6 
And yes....you should be monitored by a rheumatologist if you are diagnosed with lupus. I see mine 3 months from the first visit.
hanna24

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 #7 
Momma, I agree with Robin also.  Lupus is unpredictable which I have seen over the course of 10 years in others in my local support group and myself.  I started out similiar to you, diagnosed at age 38 with no severe symptoms other than frequent hives.  Rheumy suggested plaquenil but I refused at that time.  3 years later rheumy talked me into it.  Several years later I had a real flare with arthritis, fever, hair loss, rashes.  Then a few years after the came kidney involvement.  So I'm not sure about the "mild" lupus not likely to worsen. Sorry to be such a "downer" but this has been my observation.  Hopefully yours will stay mild forever and yes, you should be monitored, especially regular urinalysis.
Robinj

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 #8 
Over the years, we have had a few folks come on here and say that their doctor told them they only had mild lupus....
Not sure what mild lupus is. Lupus is a serious disease and as I said, to tell a patient that if was going to be bad, it would already be bad, is so wrong.What kind of doctor gives a dx of lupus and says you can go Plaquenil anytime you want? His/her job should be TO recommend Plaquenil. I am shaking my head on this one.

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Running Momma

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 #9 
Sorry, I've been out today and haven't been able to check the forum, but thank you all very much for your responses!

I do have the bloodwork results. Everything was normal except:
ANA 1:160 speckled
SS-a 8 units
Sed rate 27 mm/hr
RF         <20.0 IU/mL (which Ithink is normal?)

There's also a Albumin/Globulin Ratio 1.2 which I have no idea what that means but it says it is high. There was a lot of blood tests so I might have missed something. Is there something else I should be looking for?

The Dr said most rheumatologist assume Sjogrens when a lot of times it is Lupus, but my rheum. in my early 20s told me some people have the antibodies but it doesn't mean they will get the disease?

And please don't worry about offending me by sounding like a "downer". I really am confused and just want to know what I should be doing at this point. Thanks again!
upstater

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 #10 
Ah yes....the speckled ANA. So helpful is being super diagnostic ;-) It's the one that can mean a bunch of things. I have the same - 1:160 specked once and then 1:320 speckled.

SSA abs do point to Sjogrens or Lupus or both. And is associated with photosensitivity.

I know there are varying lab values for rheumatoid factor. I know one time mine was 12.3 and normal was anything under 15. Then I had it tested again a few months later and it was 25 with normal being anything under 13.9. Do you results show the reference range for the lab they were done in?

The sed rate is probably a little elevated, depending upon the reference range of that lab and your age. Usually, if you are under 50 the normal range is 0-20.

Do you have any dryness of eyes or mouth? Those are the primary/common symptoms differentiating Sjogrens.

Usually, if you don't have enough diagnostic criteria for any one established disorder, they give you a UCTD diagnosis. Which is where I am at. 

I think it's a legit diagnosis.....and long as your doctor understands that it is a diagnosis and still requires treatment/monitoring. Mine said to me very specifically "you definitely have a rheumatological condition". So UCTD is not intended to make light of anything going on.
upstater

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 #11 
I think rheumatology is almost as inexact as something like psychiatry. Go to 5 different doctors? Get 5 different diagnoses. So don't be surprised at the different messages you got from your 20's to now. 

Make sure you find a doctor you are comfortable with. The first one I saw, based on recommendation of someone I work with who I consider highly particular (and who has RA), was a word I am not permitted to type here. He did due some diligence in running labs and ordering a pulmonary function test, but also left out a lot of labs. When I returned to him he didn't explain any labs. Said if I didn't call you then they were normal. And when I asked for more info he rattled my ANA off as speckled and centromere. I asked for a copy of the labs, as I knew I was not going back again and guess what? No centromere was noted anywhere. He had no idea who I was or what was going on before he entered the room. And then he texted during our visit. Granted, it was to someone at a hospital, but then step out of the room.

Rheum #2 was very nice, but convinced I had psoriasis. Because I had fungus on 2 toenails. And even before he arrived at that conclusion, he gave no indication he would run any further tests or offer any treatment. He even brought up images on google to show me of people fingers with psoriasis that looked nothing like my swollen nail beds.

I had it at that point and made an appt at a specialty center and traveled to NYC to see someone who concentrated on autoimmune conditions. She reran all the labs the first guy did and then some. Found out I also had positive antiphospholipid antibodies - important to know. Ruled out some other things. And started me on Plaquenil. I feel like I am in good hands now with someone who knows her stuff. And she also recommended I see a specialty derm in NYC for a consult.

Don't settle for someone until you feel the same way. Even if you feel healthy, which I generally do too.
Dolphin

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 #12 
I also have gotten a high a/g ratio  sometimes. From wat I have heard only my own experience, it is of no concern.  As long as the albumin and globulin ratio by themselves are normal :)  Usually the SSA is seen in SJS, but can be seen in SLE. A dx of SLE requires both clinical sx and labs. Ur alopecia is seen more in in SLE.

 I think when ur dr said that not everyone with antibodies gets the disease they meant that u need more than labs to make a dx. If u look at the sle ACR criteria, antibodies and + ANA make up only 2 of the criteria, u need 4 or more.  Around a quarter of the population will have an ANA of 1:40. However, the ENA's DS DNA, SM, etc... are suppossed to be specific and not found in healthy people. As upstater said rheumatology is inexact and some rheum's will dx someone with labwork with little or no sx's and others require alot. There seems to be debate amongst rheumatology as to whether someone with +ENAs and no sx has SLE.  However, u seem to have some sx's. 


Running Momma

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 #13 
Thank you guys so much for taking the time to write all this info and share your stories! I told the Dr I have allergies sometimes in my eyes so I couldn't tell if they felt gritty from that or The Sjogrens I was told I had in my 20s and he also said my mouth was dry. He said that I was exhibiting more Lupus symptoms than Sjogrens at this point, but I'm not convinced the symptoms aren't pregnancy or postpartum related. He said I have the malar rash, too, which if it goes over the nose then I guess I do.

It just seems like so many people on this forum had such a hard time getting a diagnoses, and I feel like this dr looked at my bloodwork, looked at me, and said it was Lupus, but I thought that was a diagnoses that took years to come to. I guess because I already had the Sjogrens diagnoses?

About the labs:

Sed rate 27 (0-20 normal)
RF         <20.0 IU/mL (standard range         <20.0 IU/mL)

I'm low income, so I have to use the dr that takes State insurance, and I believe there are only a few here.
Running Momma

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 #14 
I forgot to add that I practically live outside and the only skin sensitivity I've noticed is hyperpigmentation on my face (which happened right after I had my first kid) and the malar rash
Cakelady

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 #15 
@running momma if I was you I would stay out of the sun and wear sun screen. You don't know what the sun is doing to your insides
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