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Re: Lupus?
Jul 12, 2013
Good morning, just thought I'd chime in here. I think your Dr. is putting together the kidney symptoms, positive ANA, pleurisy, oral ulcers, sun sensitivity, arthralgias, anemia and as a whole, saying you meet the criteria for lupus. Even if all other future tests are negative, you still meet the criteria. The rheum referral should be for confirmation and treatment plus ongoing care. The prednisone acts very quickly in 1-2 days often if you respond to the dose she put you on. Everyone has a threshold at which they respond, which initially may be 10-20mg/day or higher. I would see the rheum first, because I think a nephrologist (kidney) Dr is more appropriate to see than a urologist (general urinary) because protein in urine is a kidney problem. The rheum can advise you on that if you see rheum first. I think the nurses were adding to the confusion with TMI not specific to your problems. It is always scary and overwhelming to hear that you have a disorder like this. Part of the confusion may be denial and hoping, wishing it is not true. Autoimmune diseases are very complex, and when it comes right down to it, Drs don't always agree, which adds to the confusion. Part of the reason to do added tests, more specific ones, are to confirm and erase any doubts. Anti-dsDNA will be important in your case because it relates to kidney involvement. A good response to Prednisone also is a clinical confirmation to some extent. Reading about lupus can be helpful but scary. Just remember each person has their unique set of symptoms, absence of other symptoms, so no one gets ALL the symptoms listed as possibilities. What you have as symptoms initially tends to stay with you over time, with remissions and exaccerbations. With treatment, you will feel better (takes time) and you will learn coping strategies to help you live with it. Many people once on a good treatment regimen will feel pretty close to normal. Vee and I have both been through this, and remember the pain of uncertainty and flood of emotions that come with hearing a diagnosis. We women are strong beings, and my favorite motto is "when the going gets tough, the tough get going." I also like "Prepare for the worst, but hope for the best". It is normal though, at first, to feel disbelief and go thru the actual grief process. If you have a wise, trusted person to talk with, that helps tremendously. Someone outside the family, perhaps through church or a friend of a parent, etc. We are here for you too, and hope the Prednisone gives you some relief while you wait for your next appointments.
Re: Lupus?
Jul 12, 2013
[QUOTE=ladybud;5198643]Good morning, just thought I'd chime in here. I think your Dr. is putting together the kidney symptoms, positive ANA, pleurisy, oral ulcers, sun sensitivity, arthralgias, anemia and as a whole, saying you meet the criteria for lupus. Even if all other future tests are negative, you still meet the criteria. The rheum referral should be for confirmation and treatment plus ongoing care. The prednisone acts very quickly in 1-2 days often if you respond to the dose she put you on. Everyone has a threshold at which they respond, which initially may be 10-20mg/day or higher. I would see the rheum first, because I think a nephrologist (kidney) Dr is more appropriate to see than a urologist (general urinary) because protein in urine is a kidney problem. The rheum can advise you on that if you see rheum first. I think the nurses were adding to the confusion with TMI not specific to your problems. It is always scary and overwhelming to hear that you have a disorder like this. Part of the confusion may be denial and hoping, wishing it is not true. Autoimmune diseases are very complex, and when it comes right down to it, Drs don't always agree, which adds to the confusion. Part of the reason to do added tests, more specific ones, are to confirm and erase any doubts. Anti-dsDNA will be important in your case because it relates to kidney involvement. A good response to Prednisone also is a clinical confirmation to some extent. Reading about lupus can be helpful but scary. Just remember each person has their unique set of symptoms, absence of other symptoms, so no one gets ALL the symptoms listed as possibilities. What you have as symptoms initially tends to stay with you over time, with remissions and exaccerbations. With treatment, you will feel better (takes time) and you will learn coping strategies to help you live with it. Many people once on a good treatment regimen will feel pretty close to normal. Vee and I have both been through this, and remember the pain of uncertainty and flood of emotions that come with hearing a diagnosis. We women are strong beings, and my favorite motto is "when the going gets tough, the tough get going." I also like "Prepare for the worst, but hope for the best". It is normal though, at first, to feel disbelief and go thru the actual grief process. If you have a wise, trusted person to talk with, that helps tremendously. Someone outside the family, perhaps through church or a friend of a parent, etc. We are here for you too, and hope the Prednisone gives you some relief while you wait for your next appointments.[/QUOTE]

Thank you so much Ladybud! Your words have really helped ease my mind. And your absolutely right the criteria add up. I'm just really trying to wrap my head around it all & I think I'm in denial. But like you said even if the tests are neg the criteria is there. These words have helped me just accept what it is & just do my best to take care of myself. I will definitely be on here for insight & a shoulder to cry on from you guys. Thank you so much! *hugs
Re: Lupus?
Mar 10, 2014
Yes the Prednisone may be keeping the urine blood and protein away right now, as that is caused by inflammation in the kidneys, and Prednisone suppresses inflammation. Ketones are byproducts of fat and protein breakdown, so if you were losing weight, for example, you might show ketones in your urine and blood. Did the rheum run anti-dsDNA and anti-Smith antibodies? How about CRP or sed rate for inflammation? I would ask for a copy of your labs so you have a record of what all was tested. The anti-dsDNA is important since you have had blood and protein in urine, and that antibody correlates with kidney involvement in lupus. If anti-Smith is positive, I think it would clinch the diagnosis and all the non-committal foot dragging would stop.





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