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what is the differance between remission, and not having a flare?

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Posted 1/9/2010 12:03 AM (GMT 0)
I am having a flare right now, and im on steroids but when this flare goes away am I in remission, or jsut waiting for another flare?? Is there blood tests to be able to tell when lupus is in remission?? my roummy doesnt tell me crap!
Posted 1/9/2010 12:44 AM (GMT 0)
There is a difference in "remission" and just not in a "flare" right now. I actually had a period of remission for almost 3 years. I was off all medication and had NO symptoms whatsoever.

I'm not positive about the blood work thing...because...sometimes you can be symptomatic and it not necessarily be reflected in you blood work.

Dani-you have EVERY right to ask question and expect answers. I am kind to a fault with all of the people who take care of me, but I have learned, less than optimal care is not acceptable! If you're not comfortable with your rheumy start looking for another! It's a scarey thing, i've been there, but it was the best move i've ever made!

Recently, in the hospital, I had a pulmonologist who was condescending and rude to me. I told my nephrologist (who acts as my primary) and she sent him packing! A few years ago, I would have put up with it...NOT anymore! And I was never unkind or rude in my explanation to him.

Anyway...let me climb off my soapbox! Judy
Posted 1/9/2010 12:54 AM (GMT 0)
i am scared to talk to my roummy after she yelled at me and made me ball my eyes out in her office. I am new to lupus iv only known for like 2 months, and she didnt really tell me what to expect or anything just told me that i had it.

well over the holidays my pharmacy was closed and my meds couldnt get filled on time so i went almost 2 weeks with out them and started to get a alot of pain. I had to go to the er because the only flares iv had was hives, but the pain i had was in my legs to where i could hardly walk and i was falling because the muscle and joint would give. I went in to my roummys office first thing monday because i did not know what was going on and i wanted to talk to her about the weird pain i havent had before, it was a walk in visit.

Well the nurse was just gona give me steroids and a pain shot but i had questions for my doctor so i waited a hour to see her and she told me just to take steroids, then yelled at me for walking in because she said that a walk in was just to see the nurse and that if i wanted to see her i needed to make a apt, and that she did not run her office like that.
It really hurt my feelings. Im a grown adult crying in a doctors office because im getting yelled at like a child that just got into the cookie jar.

I want to get a new roummy but i do not want to have to wait a few months to get in to see one!!
Posted 1/9/2010 1:28 AM (GMT 0)
Girl...first of all, no intelligent adult "professional" should yell at anyone! That's ignorant. Secondly, you are sick and on medication (steroids) that are going to hugely impact your reaction to such a thing. I know the wait is frustrating but very possibly would be worth it for you. I am an easily intimidated person and I could not have a doctor that would treat me like that. You are going to find that their attitude and your ability to communicate openly with them WILL impact your well being.

Make sure you're covered on your prescriptions and make you an appointment with someone better! They are out there. It is not at all uncommon for people to go through a couple of docs before they find a good "fit". I had serious misgivings about looking for a new doc. I didn't want to appear as if I couldn't be satisfied or get along with people..but, again, it was the best decision I have ever made! Good luck girl! Judy
Posted 1/9/2010 1:32 AM (GMT 0)
(((( DaniJav ))))) your rheumy sounds terrible! I am sorry this has happened to you, but it may be a blessing in disguise. I agree with Judy, you need to find a new rheumy ASAP, someone that will take the time to listen to you and answer ALL of your questions. I had to do this too, I left my 2nd rheumy's office in tears because he would not take me serious and listen to me. That was the best thing that ever happened to me, my 3rd and current rheumy is awesome! Find your local lupus chapter at www.lupus.org call them to see if they can recommend a rheumy in your area or visit a local support group and get some doctor's names.

Remission is when you are med free and symptom free. Flare is a new symptom or your current symptoms get worse, skipping your meds for 2 weeks will definitely throw you into a flare. When you feel as though you are constantly flaring that could mean your lupus is not under control. When this happens your doctor may change your meds, increase doses, add new med(s), etc

Hang in there, between the disease itself and the struggle with doctor's it can be very difficult to deal with, that's where we come in. Post any questions you may have, vent when you need to, etc. Please keep us posted on how you are doing.
Posted 1/9/2010 4:11 AM (GMT 0)
My doctor refuses to use the word 'remission', he says the lupus is 'quiet'. And that's without many symptoms and no bad bloodwork in over 18 months.

He explained that since they really don't know much about the process of lupus, they are always just doing educated guesswork in how to treat it. And there aren't any tests to "prove remission" like there are in many diseases.

Guess it's all in your perspective, but even if they called it remission it's best to stay away from risky behaviors -- the things you know have contributed to your flares in the past. For me that means stay out of the sun, sleep well (even if it takes meds), make sure I eat at regular times and reasonable foods, and stay away from STRESS.

Your present rhuemy is an idiot if she thinks yelling will help her retain clients or get referrals. I'd call 2-3 rheumies and set up appointments at all of them -- make sure to get on cancellation lists -- and just keep interviewing them till you find a good match. Despite what drs would have you think, YOU are the customer.

Hang in there,
Posted 1/9/2010 3:29 PM (GMT 0)
That said, I know of no doctor who will see a patient on a walk-in basis.
Posted 1/9/2010 10:53 PM (GMT 0)
I've had some bad experiences with Rheumys, too. Before I was diagnosed with Lupus, but WAS already diagnosed with Sjogren's, I had a rheumy tell me that my shattering fatigue, joint pain, constant viral illness, and week-long migraines were "no worse than any mother with 2 small children would experience." My PCP had taken me out of work, and my rheumy shook his head wondering why in the world my PCP had done that. Eventully, I took myself to Mayo Clinic in JAX, and was diagnosed with Lupus there. They put me on Plaquenil which has completely given me my life back, but when I went by to the rheumy that I had seen prior to Mayo, he actually DISAGREED with Mayo-freakin-clinic! I refused to ever go back there, and I told them how appalled I was with them. I was so defensive when I went to another rheumy, but she turned out to be FABULOUS! Don't give up! There are good docs out there!
Posted 1/9/2010 11:03 PM (GMT 0)
I also was curious about "remission." My rheumy said that I should probably stay on Plaquenil for the rest of my life - she said it would keep me from having flares. I'm essentially symptom-free (aside from some very minor, periodic things). Some of you said you are not on meds - how did you and your doc come to that decision?
Posted 1/9/2010 11:12 PM (GMT 0)
After my first flare, which involved rapid kidney failure. I was on massive prednisone. I did not have any of the "typical" lupus symptoms. (joint pain, malar rash etc...) So, I did a "protocal" treatment for lupus nephritis. After one year, I was tapered off and my kidneys had stabilized and I remained asymptomatic.

When I came out of remission, I began having malar rash, joint pain, brain inflammation, heart involvement, kidney flare again and much, much more...SO...I was placed on an array of medications and that was Jan. '04 and I have never been medication or symptoms free since then.

I would love to hear others experiences of times when their lupus was quiet. Judy
Posted 1/10/2010 6:14 AM (GMT 0)
I miss it so much! It was real nice being able to do what i wanted to. I found out when i was having my lower abdomin pain and my gyn performd a lyproscopic surgery to see what was causing it and he saw alot of inflimation. Thats when i went and had a inflimation test that was slightly elevated and a pos ana test. That was my only symptom. I think that surgery made it worse cuz now i have been having bad muscle pain.
I am on steroids now and it helps a little with the pain but i still notice my legs are kinda bad to where i cant sleep, iv been just praying that my symptoms will at least get under control because were having a hard time with money and I need to work real bad.
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