Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi everyone. I was diagnosed with Lupus around 1994. I had been having joint problems and low grade fevers, and most other things had been ruled out. The specific test for Lupus-I forget its name-came back positive-I'm not sure what the number was, but it was definitely high enough for my doctor and rheumy. to start treating me for Lupus. It is now almost 15 years later, and they are talking about changing the diagnosis to "sero-negative autoimmune disease" due to the fact that all my tests have been negative for about the last 10 years. They still have me take the medicines I took for Lupus, because the physical symptoms get worse when they are decreased
So here is my question. If the meds are working right, they should keep the Lupus from progressing, and should keep the blood work from becomming positive, right? This is why we take them. So, if my tests have remained negative since I started taking the plaquenil, prednisone and mobic, does that mean that the meds are doing their job, or that it really isn't lupus, but an illness mimicing it? No matter what, the physical symptoms are the same-its just the negative tests results that confuse me.
What do you think-the doctors really don't know-thus the change in the diagnosis. Thanks. God Bless. Kathy
So here is my question. If the meds are working right, they should keep the Lupus from progressing, and should keep the blood work from becomming positive, right? This is why we take them. So, if my tests have remained negative since I started taking the plaquenil, prednisone and mobic, does that mean that the meds are doing their job, or that it really isn't lupus, but an illness mimicing it? No matter what, the physical symptoms are the same-its just the negative tests results that confuse me.
What do you think-the doctors really don't know-thus the change in the diagnosis. Thanks. God Bless. Kathy
Have you tried a skin biopsy? Those are pretty specific. You can find certain proteins that are active in lupus, in your skin. They take a sun exposed sample, and then a non sun exposed. If you have all of the proteins then there is a 90% probability you have lupus. Then it goes down by number of proteins they find. If you are having hair loss, you can see a dermatologist and get a biopsy from your scalp to see if it is Lupus causing it.
If you are having active inflammation I would go with the doctors in that there is something autoimmune going on. Staying on the regime your on would be the standard treatment either way itleast. Hope you find some answers soon!
I was diagnosed two years ago with serum-negative lupus. It took a trip to the Mayo clinic to get the final word. Some of my labs are still not normal even though I am on treatment. My ANA has never been postive. If the durgs I am on are working, my labs stay stable, even if abnormal. They get worse if I am flaring. I do believe prednisone and such can keep labs negative if it is working fully. I think it is just not the same for everyone. Does that make sense? I am on cellcept and prednisone.
Do you get any relief from prednisone?
Allyfaith
Its actually better for insurance reasons to not be diagnosed with lupus since they can use any medications on you that arent lupus specific. This is what I have been told.
Steroids absolutely affect blood test results. The others can also change it (like plaquenil) since it alters your immune system. If your body is not producing the antibodies that cause us to be sick then blood tests will be normal BUT blood work is not always accurate, even while in a flare so its best when dr.s treat symptoms which sounds like what your dr. is doing. Have you been on prednisone for 10 years? The idea with steroids is to use it to stop inflamation and supress the immune system quicker then the meds work and then use another drug to take over so you can taper down on the steroids and eventually get off of them. You dont want to be on steroids for long periods of time. Since you feel better on the steroids and plaquenil and sicker when you taper them then you may need a different med added to try to get you off the steroids and feel BETTER. MTX, Imuran, etc. are drugs they use to do this. Maybe speak with your dr. about this. Plaquenil can stop being enough when flaring after being on it for a long time . This was the case with me. I am now on plaquenil, pred. and MTX.
Mixed connective tissue disease is treated almost the same as lupus so either way your getting the proper meds. They just may need to be tweaked. Its not suprising that your blood work is normal because alot of times with MCTD this is the case. Try not to focus too much on your blood results. Focus on the proper treatment. Speak to your rheumy about trying another drug with the plaq. because you really do want to try to get off the steroids. They are a life saver but not good in the long run. Some of us need them all the time but that needs to be ruled out by trying another med and then trying to taper down on the steroids. Hope this makes sense. BTW, some need to be on steroids for long periods of time or even indefinitely but again, this is confirmed by being on a stronger drug and still feeling sick. having abnormal blood work, or feeling sick again once steroids is cut down. Right now I cannot get lower than 10mg of steroids even while on the other meds. My rheumy is not happy about this, mind you. It just helps me so much that I wish I could be on it forever without the stress of knowing I need to try to taper off it eventually.
Hugs