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    Flare ups
    edvidge107 posted:
    I am 37 and have had lupus for now 15 years. I have always tried to ignore and pretend that it doesnt effect me but it always has. Last year I had both hips repleaced due to prednisone useage.
    My question is does anyone have a flare for a day or two and then have it go away without increasing the pred? The only maintenence drug I take is plaquenil (Methotrexate and the like make me feel like I have been poisoned, not worth it) Whenever I flare I try to wait it out but always end up with a increased dose of steroids. I seem to be flaring more often then before (stress has to be the biggest reason/seperating from my 3-2 yr old father) Getting chubbier and chubbier by the day which is making me feel depressed on top of it all.
    Should I try to wait the flares out, or does anyone have a suggestion on a gentler maintenence drug. By the way I am new but have been reading for a couple of weeks.
    K2isKsquared responded:
    Welcome Edvidge, we are glad you decided to post and join our gang!

    I think a flare can last for a day or two, but my personal experience is that they last longer.

    My maintenance med is Plaquinel. I'm on 400 mg a day (2 pills). As you know, the steriods are notorious for packing on the weight.

    I took Methotrexate for five years, and it was a huge help in keeping me off the steriods. Mtx can be given via injection to avoid some of the stomach side effects, I don't know if you tried it that way? I took 8 Mtx pills each week, and like you I called it my poison. I had to take three other meds just to tolerate the side effects, but Mtx literally gave me back my life, so I was grateful for it. Kind of a love hate relationship

    My Rheumy isn't too keen on the "wait a flare out" idea. He's afraid the Lupus will gain speed and steamroll over me so he encourages me to be proactive on controlling things.

    Has your doc tried you on any immune suppressants like CellCept or Imuran?

    Good Luck and Keep Posting!

    Butterflyprincess84 responded:
    My Doctor always says you have to stay ahead of it cause once its in full force its hard to get back under control then they whind up pumping you full of steriods which i HATE! lol I have a pretty bad case of lupus I was digagnosed in april of 2008 after I had my daughter and I have been hospitalized at least 10 times in the last year it has begun attacking my kidneys and I just finished 6 months of chemotheropy(cytoxan) which I thought helped but I am beginning to flare again but my advice to you is so try to wait it out cause then it may get out of control and land you in the hospital! the weight from the steriods will eventually go away!!
    redwingfan2010 responded:
    My maintenance drugs are Plaquenil and Quinacrine (both antimalarials). I have huge problems with steroids, and my Rheum has said that future steroid use will be used "only in an emergency". If the 2 antimalarials don't work, our next option will be Methotrexate.

    I've been on Plaquenil for a year and a half. I've had flares in that time, all lasting much longer than a couple days... my last flare had me taking between 25 mg and 40 mg of Prednisone for about a month, then slowly managed to wean off over the next 2 weeks. It was awful.

    I just started the Quinacrine about 7 weeks ago. My Rheum put me on it to see if we could get my Lupus inder control without the use of the big drugs. I have seen an amazing difference. Joint pain is almost gone, fatigue is much improved, rashes/itching are better and my GI symptoms have improved a bunch. The 2 antimalarials seem to be working really well together.

    No guarantees how long this will last... but I'm certainly hopeful.

    This seems to be a drug that is not real widely used anymore, and I was able to find almost no info online about it... but seemed like a better idea than using Methotrexate, if it would work. (Btw - the only side effect I've had with it is decreased appetite... and after a summer full of steroids, I'm not complaining about that!)

    Good luck! Hope you and your doc can come up with something you're both happy with... maybe discuss the Quinacrine to see if that would be an option for you.
    edvidge107 replied to redwingfan2010's response:
    Thanks for the advice. On a high dose of steroids right now (50) because of a flare. I am taking plaquenil, but will check out the other with my doctor at my appointment after the first of the year. Stress really seems to effect me. Even if I think I am handling it on the outside the lupus reminds me that I can't do everything or fix everything myself.
    I now just need to stay away from the Christmas cookies...
    Hope all have a very Merry Christmas and a Happy and Healthy New Year!
    Debbie5271956 responded:
    Dear Edvidge107,

    My mother has taken prednisone for several years and I know she is always trying to take as little as possible. So at times when things are bad she takes a little bit more and when she seems to settle down and the stress is less then she takes less Prednision. I am surprised that the Prednisone has caused you to have major surgery hip replacement. I guess I better watch my mother a little closer since she is 80 this year.

    I myself can't take the methotrexate either. I have been diagnosed with Lupus for about 7 years, but I know I had it in my early 20's and just thought I was being a baby and would tough it out. Then I would be O.K. for a while. I never knew until 7 years ago why I couldn't make a complete sentence at times or why I would grasp for words that just wouldn't come, not only did I have the rash on my face I had it on my entire body when I was out in the sun with lots of sunscreen. No one put this together until 7 years ago and I finally went to a rheumatologist. My hair was falling out and no matter how hard I tried to lose weight I couldn't get it off. SO I do understand the weight issues too! Today I went to my first appointment for Biofeedback for my weight hoping she can help me get some weight off. Personally I feel like my weight has alot to do with my stress. If I am feeling OK about my weight my life is much more pleasant no matter what else is going on. I am also knew to this sight. So lets see if we can work things out together.

    With Lupus

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