View Full Version : Lupus, it is what it is - or is it
08-23-2013, 09:18 PM
Hi. I'm Rita and I have just found this website. Am not usually a joiner, but after reading some of the posts, thought maybe I could find something new that could help. I have no idea how long I have had Lupus. If you go back to 7th grade, I had to quit PE due to illness. When I was in my 20's, I was diagnosed with Hypocomplementinic Ur. Vasculitis. The doctor also said it could be Lupus, but I didn't have all the symptoms back then. That was in the 70's. Have had many weird and strange illnesses over the years and then many surgeries. Then came Gout and then came Rheumatoid Arthritis. Then came Osteoarthritis. Then came positive ANA's and the diagnosis of Lupus in 2008. Since then, I have had both positive and negative ANA's. Two years ago, I started to have lots of pain, headaches, fatigue, joint pain, and many other symptoms consistent with Lupus. CRP levels started moving up and up the scale. We started with Prednisone, then about 1.5 years ago, I went on Plaquenil. Then on to the addition of Methotrexate. Negative ANA's now and all of a sudden now have a positive Rheumatoid Factor. Have seen a Neurologist, 3 Rheumatologists, and several PCP's that always fire themselves when they see my chart. At this point, everyone is confused with what it is that I have. I am diagnosed with SLE and Rheumatoid Arthritis, as well as osteoarthritis. My CRP levels just keep rising and are now at an extreme - over 41 with 0.8 considered high normal level. Nothing is working, so we discontinued the methotrexate. After 2 years, the Prednisone caused a blood sugar problem, so I have just titrated off it as well. Hoping blood sugar returns to normal within some time frame. Just started seeing a new Rheumatologist and my new PCP just told me to find someone new, so off we go again. I've shared a lot more with you than I intended to but I am looking for someone who might relate to this kind of experience or know how to deal with the on again, off again diagnosis issues.
08-27-2013, 10:54 AM
Hello and welcome to our family;
Unfortunately - that is the nature of the disease! Lupus does not affect everyone the same way and the disease, itself, changes within us. Thus, positive ANA and one drawing and negative ANA at another! Normal CPR at one drawing and High Levels at another. Symptoms can come and go, get better or get worse, and new symptoms can appear. The only thing that is constant about the disease is the fact that it changes and never appears the same way in anyone.
Many of us have discovered that we suffered from symptoms of Lupus for years prior to our diagnosis. Like you, I can go back to symptoms that I suffered from in Junior High School.
I am sorry that you have run into so many doctors who appear to be cowards. One of the things that we advocate strongly here at WHL is that the patient become educated about the disease, its treatments, its medications, its symptoms, and how it affects you personally. You may find that you will have to educate your doctors, demand certain tests, demand certain medications, and demand that they take you and your symptoms seriously. You will have to become your own health advocate and in order to do so, you will have to be more knowledgeable about the disease than most doctors that you will run in to. You can start by reading the "stickys" on the top of each forum..they are very educational and may answer some questions that you may have.
Also, please know that we are here to help you do just that - learn as much as you can and advocate for yourself. We are also here to support you because we certainly understand! I wish you the very best!
Peace and Blessings
08-27-2013, 03:08 PM
I am facing the same thing with doctors I am seeing. I have been to my family doc, 2 Rheumatologist, orthopedic, and Nerve Specialist. I am on the way to a third Rheumatologist! I feel like I am not taken seriously when I speak of my symptoms. All of them speak of Auto-Immune diseases, but never a definite diagnosis. I have researched all of them and my blood test and symptoms support Lupus.
It is frustrating to say the least, but we have to keep fighting on. I have to constantly remind myself of that. I have also went back and can recall symptoms I experienced as a small child. I am going to be prepared this time around to make them listen to me.
Hope all works out for you,