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Questions about living with lupus

497 Views 7 Replies 4 Participants Last post by  Blodwyn
Hi all - I'm a grad student in health psych with a low-level autoimmune disorder. I was not diagnosed with lupus as I don't meet all of the criteria. I had a positive ANA test, protein in the urine, joint/muscle problems, and a condition for which I had to have surgery. But not lupus as I lack the butterfly rash and the anti-Sm. They don't know precisely what it is that I have, but basically I have to treat the symptoms as they flare.
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Get a new Rheumy. You don't have to have the rash to have Lupus. I'm one of the ones that so far have never had it. :) (sorry, couldn't resist.) I'm going through another joint flareup I'm thinking that eventually I'll have to face the possibility that it could be more than what I want it to be :( I do find that acupuncture alleviates a lot of the pain though, and usually the effects last awhile.

I don't know about the others but when they first thought that I had Lupus I did not have the butterfly rash, I did not get that until about 6 months later. It was really strange because when I did not have the rash my tests were negative and then all of a sudden I got the rash and then my test results became positive. But the thing is that just because you do not have the rash does not mean that you don't have the disease. Take Care Laurie:wink2:
Thanks so much. That makes a lot of sense to me - my flares are typically almost random-seeming. Interesting and scary about the rash. I wonder if I should go back to the doctor and be retested. This is great for the class presentation. Thank you so much.
I would go back and be retested it can not hurt except the needle part :rotfl: . As I was saying earlier I was tested 3 different times to get a positive diagnosis. It seems to be a battle to get the diagnosis but after that then the docs know somewhat of how to treat you. Don't give up and try to stay positive I know that sounds corney but I have noticed the more I get down on things the more the Lupus kicks my butt so I try to stay positive even tho at times it is very, very, very difficult. Keep up the fight and like I said stay positive!!!!! Nice to be able to help you a little. Laurie:rolleyes:
Welcome to the forum Blodwyn

I don't know whether you have lupus, or a similar connective tissue disease, or not. But it is ridiculous for a doctor to say it is not lupus because you don't have a rash or anti Sm antibodies. It seems that only 20% present with a rash and only 25%-30% have the anti Sm antibodies, and only 70% have lupus related skin problems at some point. So that's quite a lot whose skin is never affected.
Only 4 criteria are listed in the classification criteria for and SLE diagnosis when there's a significantly high ANA. The ANA alone is enough for an SLE diagnosis

Much depends on the ANA titre : if it was below 320 especially 160 or lower, then it could be due to other reasons and the joint aches and pains could be due to lots of things.
I would certainly get regular retesting and very regular urine tests to keep an eye on the protein levels. Also of course keep an eye out for obvious new symptoms such as extreme fatigue and hair loss. The important thing is to determine when disease modifying treatment is required. In fact it is better to get a diagnosis such as Undifferentiated Connective Tissue Disease, UCTD, which doesn't have the implications for insurance that an SLE diagnosis does. This might be exactly the same as lupus in practice, except lacking any lupus specifics, or any specifics for other autoimmune connective tissue diseases, CTD's.

I'd check out the ACR Criteria lists and also the 'Alternative Criteria' to see what you can relate to. Maybe there are some symptoms that have not been taken into account. Get copies your blood tests results to check them over and keep for future reference.

I PMed you about your questions.

Bye for now

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Wow, I didn't know that. The ANA was significantly high, but I don't know the exact number. So they ran the anti-SM and then told me that I was in the clear because it was not positive.

Thank you for the other information as well. It's very scary in a lot of ways because it is quite painful - at this point I can barely write. I can type, though, so luckily most things are computerized...part of me is too afraid I think to go back and talk to the doctor.
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