Sorry to hear you having such bad problems. My best suggestion is another rheumy - totally different one. Know what you are going thru. Have just had back surgery to relieve pain, but no luck with pain relief. Keep your head up and keep going, know it isn't easy.View Thread
Your doctor may start you at one dose, then increase it and decrease it after you get out of the flare. I have been on this for several years after a flare that lasted almost a year. Started at 500mg twice a day, then 1000 twice a day then 3000 in all for a few months before the flare went away. I am now back at 500x2 which is kind of a maintenance level. My doc says I will be on it forever since I have autoimmune hepatitis and latent TB which both take away most other options except my steroids which I have been on for 16 years. They have blessed me with steroid indued osteoporosis and several back fractures.You need to be patient and let the meds do their work. I know it is hard, but you will get through this!View Thread
Lisa's comments are very true. I was sent to a rheumatologist 30 years ago but didn't have enough symptoms to be fully diagnosed. Fast forward fifteen years and my lupus was full blown. Before you see another, make sure your doctor has forwarded the test results or better yet, get a copy for yourself and make a copy for the new doc. I like to have copies of my tests. That way I can share when needed.
Try getting those results and see another doctor, it can't hurt.View Thread
FIND A NEW RHEUMATOLOGIST FAST!! You need to have one you can count on when you have a flare, one who will work with you to get you through it and one you can call for any reason. I am blessed to have a fantastic one who diagnosed my lupus 16 years ago even though I may have had it much longer than that. When he found out I was in rehab (in hospital rehab) for a total hip replacement, he saw me every single day and never charged me or my insurance company a penny. I call that going above and beyond for a patient. He always returns my calls and is with me all the way. I am lucky that I live in the NYC metro area (on Long Island) where there are lots of rheumies to choose from and I've already selected one in case this one retires.
Did your rheumatologist do other testing-like double stranded DNA? You seem to have the symptoms, but need more definitive testing.,some docs even call something like yours a pre-lupus condition. I really think you need to get a second opinion. I wish you lots of luck and this forum is a good place to get answers!View Thread
It is better to get off the predisone if you can. It does a job on your body!
I, unfortunately, can't get off it. I have both autoimmune hepatitis and latent tuberculosis which make me not a candidate for other treatments and allergic to plaquenil. I am older but only diagnosed in my 50's. Have been on steroids (medrol) for 15 years. All was fine until they took me off fosomax ( for low bone density) for a two year "holiday" and 23 months into it I tWo compression fractures in my spine and have been diagnosed with steroid induced osteoporosis. Lupus doe not go away. You are in this for the long haul and getting off steroids is important to the rest of your body. i so wish I could!! I wish you luck! Decision making is the worst, but if you trust your rheumatologist, go for it!View Thread
Although I don't live with a pellet stove, i have been around one a lot this winter in my nephew's home. I have lupus and asthma and have been there for hours with no problems at all.
Don't know if this helps at all.View Thread
Welcome to the group! Web MD has good information, but you can find lots more at the Lupus Foundation. There may also be lupus support groups in your area. We have them through the Lupus Alliance of Queen and Long Island.
You need to learn to manage yourself by pacing yourself and accepting support from friends and family when needed. At times you will need to "give in" to your body in order to keep your strength up. You need to listen to your body and act accordingly. Keep a log of your symptoms and feelings so you can share them with your doctor. You need to be open with your doc and tell him everything.If you aren't comfortable with this one, find one you are comfortable with then keep him or her informed of everything. I have a wonderful one I have been dealing with since diagnosis 15 years ago. Good luck and keep posting here- others will answer your questions.View Thread
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