I, too search for remission, having been diagnosed 17 years ago and never been off many medications to keep me somewhat stable. Having been in a flare now for more than 2 months, I'd be happy to more stable. If I up my steroids I feel better, but doc is not happy with that. Told me to take pain pills instead, which I really don't like so right now between a rock and hard place! Can't bend my fingers in the morning and it is making life a bit difficult! I will get through this just as I have others, but really is annoying right now!View Thread
I have autoimmune hepatitis and see a liver specialist regularly to keep it under control. I had many years of elevated liver enzymes before diagnosis. Now I take one pill twice a day and it pretty much keeps it from flaring up. I did try milk thistle, but without much luck and had already been taking fishoit and flax. I can' take chances, so I rely on my hepatologist and he has kept my liver in pretty good shape sice diagnosis about 10 years ago. Good luck to you.
So sorry to hear your problems with your rheumatologist. I am blessed with a wonderful one who listens to everything I say. He has me on a combination of several medications and allows me to increase my steroids when I need to when symptoms appear..
Do you live in an area where multiple rheumatologists are available?
You definitely need to find a new one that you will feell comfortable with and who listens.
This board is a good place to ask questions about concerns.
This will happen. Almost all of us have unexpected flares. Just keep doing what you are doing and hopefully the flares will be infrequent. I am lucky that most of the time mine are minor because my rheumatologist allows me to handle my meds myself (the minute I feel one I am able to increase meds to calm the flare and then slowly lower them back to my maintenance dose). I have been diagnosed for 16 years and have several autoimmune diseases. The only real bad part for me is that I will never be able to come off the immune suppressing drugs or the steroids.
Good luck to you and I pray you'll stay in remission.
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