Okay, now I have some questions...
For someone who didn't want to talk, I sure ain't shuttin' up am I?
I am just curious is there a minimum amount of time before people go into remission?
I have lupus nephritis and don't have a lot of symptoms, how will I know if I am IN remission? Or if I'm having a flare, for that matter?
How do you know if you are "overdoing it" or if it's the medication making you feel the way you are feeling?
How do you distinguish a Lupus reaction from a medication reation?
Are there people who, though treated properly, NEVER go into remission?
How long or short can remission last? I mean, can you be in remission today and NOT be in remission tomorrow and then the next day be in remission again?
I have a lot more... But, I think I better go easy....
SoleSinger, hopefully someone will be along who can help you more than I can with your questions about remission. My understanding is that you can go into remission anytime, especially if you are experiencing mild lupus. I'm still trying to figure out the whole remission thing myself. I have noticed that I have had periods of one to three weeks at a time of feeling pretty productive and functioning (although I still couldn't do everything I used to do before becoming ill). Usually just as I was wondering if I was going into remission, I would inevitably have a flare again. I'm not sure what length of time constitutes a remission. Unfortunately I think there are some people who don't go into remission.
I'm still trying to figure out balance in my life between rest and activity. On days that I feel okay I am so excited that I probably overdo it and can go into a flare. I think finding a balance can improve chances of remission or at least more good days.
As far as flares go, I guess everyones experience is a little different and the longer you live with your disease and become more aware of how it affects your body, you'll probably start to recognize when you are having a flare. For me keeeping a log or journal of my symptoms helps me with my awareness. For me I know I am in a flare when I have all my symptoms at one time and they are magnified by 100. My face gets really red, I have a fever, I have joint pain and swelling that medication can't help and fatigue so overwhelming I can barely function. My labs are usually more off during a flare too.
As far as whether symptoms are due to meds or too much activity, that can be hard to figure out and you may need your doctor's help. There were some meds that I took that I could just tell I had a terrible reaction to and was able to quit taking them after talking to my doctor.
I hope this helps some and hopefully someone will come around who is more knowledgable about this stuff than I am. I am just so glad you finally decided to talk. I really hope this site helps you. Take care.
Thank you! That journal idea is AWESOME! I will definitely use that!
The people who don't go into remission... Does anyone know how long one can live with it being constantly active?
I don't know all the answers either but I started to be ill after hysterectomy in 2001. My ESR (inflammatory blood test) has been high ever since. I have been on prednisolone for 3 years but its higher now than its ever been. I am not constantly ill my symptoms go up and down but I test my wee myself and notice lots of leucocytes(white blood cells) and blood in it when I am flaring. I also have lots more sweats. I also get increased fatigue and often need to rest about 4pm. My generalised hurts fluctuate too
Does this constitute a flare--guess I don't really know but the only time I feel great is when on Prednisolone 30mg. I feel like I am on an illness holiday then.