It's been a month since I was diagnosed with Lupus, 3 months since the worst of my symptoms started. I was told by the doctor who diagnosed me I had "classic" lupus symptoms. I've been on Prednisone since my diagnoses and have weaned myself to 2 1/2mg per day. I plan to get off the Prednisone and not take any other immune suppressive drugs. My symptoms have almost all gone away. I hope this isn't a stupid question, but what's the difference between the day to day pain of lupus, and a flare-up?
A flare-up is exactly that - your autoimmune system goes into overdrive. It varies from greatly person to person. It could be rashes, severe joint pain/fatigue, infections, kidney/lung problems...
There are a number of books that you can get at the library to read about Lupus. There's one called "The Lupus Book" it has a teal-green cover. It's kinda like Lupus 101 for dummies. The beginning gets a little technical, but if you get through it, you'll find a lot of helpful info.
You know your body better than anyone - you can judge what's "normal" for you. Sometimes it can be a gradual decline into a flare, or it can hit you like a brick out of the blue. Stay out of the sun, take care of your self, minimize stress (I know, ha ha) and keep a good line of communication with your doctor.
You might ask your doc about trying Plaquenil - it's not a steroid like prednisone, it's side-effects are minimal at best. It takes a while to start to work, but it's something most folks rave about. It's an anti-malarial - so in case you decide to jet off to south America, you're covered too! LOL
Good luck and keep us posted!
[This message has been edited by scbagrrrl (edited 08-22-2002).]
I found one book on Lupus that has been helpful. Our library is closed now for a couple weeks while they put down new carpet. Good timing. I got really stressed out yesterday, tried not to, but when you've had anxiety all your life it's kind of hard, even when you know it is poison. So, anyway, I felt like crap today. I was able to get up for a couple hours, then had to go back to bed for a few hours. Lupus really sucks. I do not like it at all.
Like it or not, you've got Lupus. The challenge you have now is how to deal with it. You can let it rule your life or you can come up with strategies to cope - be it taking care of yourself, finding ways to destress (yoga, tai chi, meditation, or Mr. Bubble), building a support system.
It's overwhelming but the more educated you are about the disease, the better you'll be equiped to deal with it. There are a lot of websites offering info while your library is shut down. [url="http://www.arthritis.org,"]www.arthritis.org,[/url] [url="http://www.lupus.org"]www.lupus.org[/url] for starters.
Don't let this disease control you - it's time to get into fight mode.
I sometimes get these bright red patches on my cheeks,which are hot to the touch. I also have muscle aches,and stiffness sometimes in the mornings.
Someone at work mentioned Lupus when they saw the red marks on my cheeks.
Thanks for the info scbagrrrl. I woke up feeling pretty good today. The Lupus symptoms are subsiding, and it's a beautiful day. The library opens back up today-so that will definatly be on my priorties list. At this point I wouldn't say Lupus is ruling my life, but it sure takes a lot of my time and energy thinking about it and learning about what's good for me and what isn't. I have a good support system of wonderful friends and family, although one friend told me recently it was getting to the point where he was afraid to ask me how I was doing. I have done Tai Chi every morning for about 5 years, I exercise as much as I am able and try to eat a "good" diet-whatever that is. I am trying to meditate more to try and get a handle on how I deal with stress. Any suggestions of what has worked for you would be welcomed.
May the force be with you.
Be careful. I was feeling some better and thought the bextra was not really doing much. But I had to have surgery and did not take my bextra. Well, my hipps were really hurting I could hardly put any wieght on my right side and later my left. I first thought it ws the surgery. But the doctor was right it was from my illness.When I was able to take the bextra again my pain went away. I was hoping for remission.
hello my name is kajal and was diagnosed with SLE in march this year!!!!! it was a shock but i have stayed very strong and dealt with it really. it has affected my kidneys, they are very inflammed, leaking alot of protein, but the medication chclophosmide has helped to decrease it. i still have two dosages to go. im on 20mg steroids and am hoping to cut down to 10mg soon. my face has put abit of weight but touch wood no other side affects(that i no off), the rest of my body is thin. however due to fluid retention i have very deep stretch marks all over my legs, from top to bottom. is there anything i could do to remove or fade them away????? my hands to get cramps now and then.