Well I was diagnosed with lupus 5 months ago. My first positive Ana, fingers, hand, wrists, knees aching. Hair falln out. mouth sores etc.. then two months in started getting dry eyes, dry mouth. talked to rheumy.. She did nothing.. I was on prednisone and plaqunil. Now I have been weened off my prednisone, Im so sick. I ache, tired, Im getting rashes on my legs daily. Im in search of a new Rheumy. I live in South Orange county California..My last sed rate came back negative.. so now she doesnt know if I have it.. Im so overwhelmed. Im grateful for my Husband who is my greatist advocate, and pusher of me getting a new dr.
I have to work two jobs right now. Ive had to call in sick quite alot lately..Im thankful for sites like this..
I also have hoshimotos, renauds..
Hi Meg and welcome to WHL! I agree that it is time to find a new rheumy! The numbers fluctuate (especially on plaq) and a diagnosis cannot be made based on sed rate alone! I did the bad rhuemy thing for a long time and, like you, I had enough. I finally found a good one and I hope you do as well. If you have any kind of teaching hospital in a major town near you I suggest you go! I finally found a team of doctors that cared about what I was going through when I started in with UTMB Physicians in Houston.
You deserve to feel better and I will cross my fingers that you find someone to help with that! Until then, just know that we are here for you!
Well, "Welcome to the forum!" Mama Meg. You've come to a great place with all sorts of fantastic members that are beyond supportive and understanding. Sorry about your situation. It's all too familiar, though I don't do plaq. I'm only on prednisone, plus all sorts of other stuff to make-up for no thyroid and other now-missing body parts... lolol Be sure and cruise around all the different areas of the board and read all the stickies. They're a good resource. In the meantime, we'll be praying for you.
Sorry about the problems you are having. I know all about the joint pain, hair loss, rashes and fatigue. I feel for you. I'm on prednisone, plaquinil and imuran and still very little relief. This site is wonderful, great people are here willing to help, listen and most importantly understand. I agree with your hubby and the others on here, if your rheumy isn't working out find another one. I do know it takes a long time to get some of the diagnosis right. Lots of tests and other things to definitely say you have Lupus, another one of the connective tissue diseases, or a combination of diseases. You need somone that is willing to try to find out what helps you. Till then if you need support... you have a famiy here.
There will be a brighter day! Billie
Welcome to our WHL family. I agree that it is time to find a new rheumatologist. Once you weened off of Prednisone, she should have taken note of the fact that your symptoms returned and/or worsened. Many, many of us have had to start taking Prednisone again and lots of us have to stay on a maintenance dose in order to keep our symptoms under control and to avoid damage to our organs.
Also, the fact that she ignored you when you mentioned your dry eyes, etc. tells me that she does not have appropriate knowledge of Lupus and, therefore, will not provide you with proper care.
I am so happy that you found us and that you joined our WHL family. One of the most important things that we do for ourselves (and for one another here) is to become educated about Lupus, its symptoms, its treatments, its medications, and how it affects us personally. In becoming educated, we can then be advocates for our health care by making informed decisions and, therefore, instructing our doctors on how we want them to proceed with out health care.
Lupus patients cannot be at the mercy of their doctors or the decisions that their doctors make. We must be pro-active, downright demanding, and steadfast in our insistence upon being respected, taken seriously, and treated appropriately! We want to help you to that person and to help you to deal with this disease in order to live as normal a life as you can. Once again...welcome to our family :-)
Peace and Blessings