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After 3 diffrent biopsy's and multiple sets of bloodwork the doctor said i had "lupus related autoimmune disease" is that a yes or no?
07-31-2008, 04:25 PM
Hey welcoming you with open arms, Bevi..huh...
Lupus isn't a relation, relative, a kin of an auto-immune disease, it is one... :shock:
I would say, that would be a yes..well, depending on symptoms, and results of your tests and not the doctors statement. Do you know what your results were?
The ANA was positive. My blood was "out of whack" according to the doctor and the CRP was extremely high.
07-31-2008, 04:56 PM
And how about your symptoms? Have you read the ACR criteria for diagnosing Lupus? Was medicine prescribed?
I do not have the typical butterfly rash. My whole face just goes red. It feels like its burning right under my skin. After a while it goes away. I have the arthritis in back, knees, and ankles. When I go to bed at night i am usually freezing cold. I wake up with my clothes soak and wet from sweat. I have fatigue all the time and Raynauds on my finger tips and toes.
08-01-2008, 01:54 AM
Welcome to the site. My name is Kathy. I also have SLE, Lupus and have had it for years. I have several of the other auto-immune diseases too. I am wondering if you were tested for Sjogrens along with the tests for Lupus. There are a lot of good folks that come in here and they are very knowledgeable. I just want to welcome you to the forum.
No, I dont know if he has tested me for that. I am not even sure what that is. I didnt even know for sure what lupus was until about 3 months ago. I have seen on here where alot of people document what is wrong with them. That is something I need to start doing. I am here because my husband and I have decided to start doing research. From all the web sites that we have looked at and read this one seems to be the most informative. I need to know what to ask the doctors to get straight answers. So here I am.
08-01-2008, 06:52 AM
The reason I asked if they tested you for Sjogrens Syndrome is becuase of the back and ankle pains and the fatigue and also the Raynauds. Sjogrens Syndrome is an autoimmune disorder as well as is Lupus. A lot of times you can have both or you can have them alone. With Lupus and with Sjogrens you could have a positive ANA test. Do you know what the pattern was of the positive ANA test. If the ANA pattern is a speckle pattern then they could also look at Sjogrens along with the Lupus or by itself. I am just wondering, because I have this along with the Lupus. I also had the typical malar rash and most of the 11 criteria that they use to diagnose Lupus throughout my life. How many of the Lupus symptoms do you have? They require that you have at least 4 or more of the criteria before they will diagnose Lupus. Lupus is a very serious illness and they will not diagnose it unless they are very certain that you have it. Have you read the criteria that they use to diagnose Lupus? I will post them in this post. I hope that this helps some how, but here is the criteria that I got off of a website:
Classification criteria for systemic lupus erythematosus:1
Butterfly (malar) rash on cheeks
Rash on face, arms, neck, torso (discoid rash)
Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)
Mouth or nasal sores (ulcers), usually painless
Joint swelling, stiffness, pain involving 2 or more joints (arthritis)
Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis)
Abnormalities in urine (test results show increased protein in the urine or clumps of red blood cells or kidney cells, called cell casts, in the urine)
Nervous system problems, such as seizures or psychosis, without known cause
Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells
Positive antinuclear antibody (ANA) test
Laboratory tests indicating increased autoimmune activity
I hope that this post helps.
08-01-2008, 06:54 AM
Sjogren's is dry all over (your mouth, ears, eyes, nose, skin and your private parts.
I had a Rheumy tell me that my dry eyes and mouth was caused by my CPAP. I chuckled to myself, and wanted to say (is that what's causing my dryness in my private parts too).
He was a quack, and haven't been back to him since.
08-01-2008, 07:01 AM
I think that it is sad that there are such idiots out there that would say things like that quack said to you. Knowing me I would have said something smart mouth to him big time and then he would not have gotten paid for his services. You should have asked him how in the heck the CPAP could make you abnormally dry downsouth. I am glad you are not seeing him anymore.
08-01-2008, 07:10 AM
Kathy, same Rheumy said not to give me any medication because of my MS. I didn't go to see him about MS. I went to see him about my Sjogren's, Lupus symptoms, Ankylosing Spondylitis, and Vitiligo. He did diagnose me with Fibromyalgia, within 5 minutes of seeing me.
I tried showing him my swollen, badly deformed toes from arthritis, after walking into furniture, and walls with them. He said there was nothing wrong with them, they were beautiful. I tried showing him my Lupus rash, I was too shock, about his diagnoses of FM, that the cat got my tongue - I just walked out of there knowing I was never going back there, and thankful he hadn't put me on medication, because he hadn't taken one minute to read my chart, and seen all my allergies.
Yes i have read the list and of the 11 i have these: mouth ulcers, photosensitivity - but not the butterfly rash, protien in urine, the doctor said my "bloodwork was out of whack" - at the time i didnt ask any questions because i was so suprised. The ANA was positive. He seems to be more concerned with the body inflammation. He has tested me for vasculitis, tb, bechets and all have come back negative. I go in 2 weeks to have these test run again. CBC/CMP/EIR, C - Reactive Protien, and a Vitamin test. The only reason i know that is because he wrote it down for the lab techs. I dont have any idea what they are for or if its even related. We have just recently started researching lupus.
also with the heart. I have been to the ER because i had trouble breathing at work. My chest hurt. The ER doc. dx me with "Painful breathing" that was possibly related to my thyroid.
08-01-2008, 07:52 AM
It sounds like they are running all of the usual tests for Lupus from what you listed. The vitamin test is that they are probably looking for a B12 deficiency and things like that. I hope that they find the answers for you and help you as no body should have to be sick. It sounds like you have a lot of the criteria listed. I hope that this doctor helps you out. Keep us posted ok as to what he says. I will keep you in my prayers.
08-01-2008, 08:18 AM
Hi Bevi and welcome -
I have heard that expression before actually (lupus-like auto-imm.dis.) and what I think they mean is that you DEFINATELY have an autoimmune process going on, but its not yet DEFIANTELY lupus. There are terms used often now lke "pre-lupus", etc. It sounds to me as if they are leaning towards an SLE (thats another term for lupus) diagnosis, but are waiting for more specific tests to come back.
The important thing here is this: Whether they think you have SLE, pre-lupus, "some" autoimuune disease, they should be treating you...Your elevated CRP indicated there is inflammation going on somewhere in your body, and a course of steroids could help with inflammation, pain and fatigue. Prednisone is a commonly used med in lupus (and otther diseases) along with plaquenil. Plaquenil is very safe, yet takes a long time to start working. Prednisone has side effects, yet in short-term doses are usually fine. Prednisone made me feel ALOT better within three days - after being in bed sick for many months...
Official Dx is very difficult with these types of diseases, but, you can be treated without an official Dx...you do not have to suffer!!!
Again welcome, and let us know how you make out..
08-01-2008, 09:00 AM
Regarding your chest pain, have they check you for pleurisy, pericarditis or costochondritis?
CBC..is complete blood work with platelets and differential: This is a series of tests of the peripheral blood which provides a variety of information about the blood components. This series includes the following tests:
* Red blood cell count
* Red blood cell indices
* Mean corpuscular hemoglobin
* Mean corpuscular hemoglobin concentration
* Red blood cell distribution
* White blood cell count
* Differential count
* Platelet count
CMP, Comprehensive Metabolic Panel is used as a broad screening tool to evaluate organ function and check for conditions such as diabetes, liver disease, and kidney disease.
CPR, C-Reactive Protein increases in severe cases of inflammation, the test is ordered when acute inflammation is a risk or suspected based on patient symptoms. It is also ordered to help evaluate conditions such as rheumatoid arthritis and lupus and is often repeated to determine whether treatment is effective. This is particularly useful for inflammation problems since CRP levels drop as inflammation subsides.
Vitamin test can also be used to detect deficiency in Vitamin D, especially if you avoid the sun..photosensitive..
EIR, is that a typo..could it be ESR... Erythrocyte sedimentation rate? If so it is nonspecific test that has been used for many years to help diagnose conditions associated with acute and chronic inflammation, including infections, cancers, and autoimmune diseases. ESR is said to be nonspecific because increases do not tell the doctor exactly where the inflammation is in your body or what is causing it, and also because it can be affected by other conditions besides inflammation.
Keep looking for your wellness,
It could be esr. His handwriting looks like scribbles. LOL. Thank you for all the information. You have saved me many hours of research.
08-01-2008, 09:59 AM