View Full Version : Back with a question
02-17-2008, 03:20 PM
Haven't signed in for a long time. It has actually been a good year for me.
I have been really blessed. My body reacted really well to Cytoxin treatment and I am now in remission. My health (besides a few aches and pains now and then) is great. I am on maintenance doses of CellCept, Plaquenil and Prednisone.
I have a question and am sure the answer is here on the forum but figure that I would ask again.
Flares. Do they happen to people in remission? What exactly are flares?
Let me know how you are all doing.
02-17-2008, 03:27 PM
Congratulation on your good health!! I'm so glad the meds worked for you.
Good question...and I'm guessing there will be a lot of different answers. I expect that having a flare would mean that you are NOT in complete remission. 'Course, the definition of 'remission' is even in question. My rheumatologist tells me that she would not consider me in true 'remission' unless I'm symptom-free WITHOUT meds. Now, I just can't imagine that happening. I read an article that I found on the Lupus Foundation of America website that says less than 5% of patients with SLE actually go into complete remission. What's more common is that people will progress from severe forms of lupus to a milder form of lupus. Wish I could find the article again - I'm guessing if you search for it, it's out there.
02-17-2008, 05:28 PM
I was told, almost 15 years ago, that I was in remission. Well, I still have symptoms and flares. My doctor explained that remission is different for all of us, but in his opinion in meant: "Being able to manage the symptoms and flares of Lupus without a lot of medication!" In other words, most of my medications are for my co-existing diseases. I take very little medication for my Lupus and when I flare, I usually do not need to increase those medications if other options work to alleviate the symptoms of the flare. Those options include taking all of the precautions (avoiding the sun, avoiding stress, getting rest, etc.).
Sometimes my rheumy says that I am in remission and at other times he says that I've been downgraded to "Mild Lupus". In any event, I am able to manage my Lupus and my flares with a minimum amount of medication.
So, just as everyone's lupus is different....so is our remission!
I am very happy that this has been a good year for you and I hope that it continues
Peace and Blessings
02-17-2008, 10:04 PM
Thanks for your responses. Yeah, I was wondering because my thought was "O.K., I am in remission then I should be back to normal. Why then am I still getting on and off joint pain and hot flashes?" Feeling healthy can give a false sense of security. I want to start working out to get rid of my little belly (especially after my two-year old nephew patted my stomach the other day and said, "bel-lee") but I need to kind of figure out my limits so I am not hurting myself more than helping.
02-18-2008, 12:53 PM
I am a strong advocate for regular exercise. So, I am going to encourage you in this area :lol: Just listen to your body, take it slow at first, stay away from jarring exercises. As your body responds to regular exercise, you will be able to increase intensity and time...but never, ever, overdo. At the first sign of fatigue, stop and rest. Perhaps later in the day, you can do a bit more. But, stop when you feel fatigue.
The heart rate that we once strived for (before we became ill) is no longer our goal! We exercise to assist our bodies in managing our disease. Exercising is also crucial for our minds, bodies and our souls. The body's natural release of endorphins, which occurs with exercise, provides wonderful emotional uplifts and is also a fantastic pain reliever. In addition to reducing heart disease, helping to keep our bones and muscles healthy and managing our weight, exercise is an excellent outlet for relieving the depression, anger, stress and anxiety that comes with Lupus. Believe it or not, regular exercise improves our energy level, helps to alleviate our debilitating fatigue, help us to sleep better and promotes healthy bowels and boosts the immune system.
So, I say, yes...do exercise regularly, but be cognitive of your body and your limitations!
Peace and Blessings
02-18-2008, 02:58 PM
My intermission to me is when I can enjoy life using my body and not just enjoying life within my mind and spirit. When my cheeks are light pink and no rashes can be found, and I can bend my fingers without a moan..now that is my intermission.
Those days come oh about every few days for the last two years. It's been a hellicious ride. Sometimes I have been left on the roller coaster for months, screaming and crying to get off and as of late IT has been giving me a break. Just toying with my innards lately.
I've never been told I was in an intermission, self proclaimed. Usually when I do get myself in to see the doctor it is because I am tattered and torn.
I love life, but with having Lupus we can't overuse it.
02-19-2008, 10:35 AM
So true Oluwa....everything that we do has to be with measured effort and concentrated resolve. Nothing is lack-a-day for us. We must be conscious of our every deed in order to get some measure of joy out of our lives with Lupus (along with its myriad of co-existing illnesses). But, here is the good part....we do find joy; we do appreciate all of those little things that many others take for granted; we do know how to look for the beauty in every thing and in every person, and how to praise it when we find it!
So, with all that we are challenged with, we are still BLESSED!
Peace and Blessings