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    Minimizing steroid side effects
    David Zelman, MD posted:
    It is likely that most lupus patients will at some time be taking steroids to control some aspect of their disease.
    In order to minimize the adverse reactions (which are numerous-- check this out on Webmd site) you should:
    1. Always follow your MD's advice on dosage, do not manage this on your own. If it is possible, your doctor may prescribe other medications to allow your dose to be as low as possible to control the disease. This might include "alternate day" regimens, use of skin applied ( topical) steroids for skin disease or use of other "steroid sparing" medications.
    2. Take measures to minimize weight gain including exercise and watching your calories.
    3. Keep sodium intake low and potassium intake high. Often a diet that is generous in fruits and vegetables will accomplish this.
    4. Take Vit D 1000 IU daily along with calcium 1000-1500 mg a day. Your physician may also sometimes prescribe a medicine to help protect your bones.
    5. Since steroids make you more susceptible to infection, report high fever T> 102 degrees to your physician. Other symptoms such as severe cough, painful urination might also prompt a call to your MD
    6. Do not stop taking steroids suddenly especially if you have been taking them for more than 2 months.
    7. Be an educated healthcare consumer and take the time to learn about steroid side effects so that you can report them to you doctor as soon as possible.
    David Zelman, MD
    Was this Helpful?
    79 of 110 found this helpful
    lupylisa44 responded:
    Thanks for the info! Now, can you give some tips on how to get off of steroids after being on them for over 10 years? That is what I would really like to know!

    suzeb0606 replied to lupylisa44's response:
    I agree Lisa. Been on Prednisone, lowest dose 7.5 mg/day since 1999. Would love to get completely off the med and see my former thin face...oh what a treat that would be!! Guess I will just keep trying. Take care. Suzie
    HG1948 replied to suzeb0606's response:

    I've also been decreasing my prednisone daily dosage levels. Like yourseIf, I seem to be unable to get lower that 7.5 myself, at the present time.

    I'm think I'm experiencing more pain due to severe thunder storms being here in this part of Texas during the last couple of weeks. Barometric pressure changes have caused me great pain because of my degenerative joint disese. Therefore, I am going to postpone decreasing my steroid levels, until after these storms are gone, which might take awhile. I'll remember this for next year, so I won't be surprised when my steroid level needs to be "cranked up" to a higher level during this season of the year.

    Also, FYI, don't decrease or re-adjust any of your prescription drug's dosages if you are ill from an infection. My rheumy. cautioned me about this several months ago. I'd told her I been decreasing my daily steroid dosage.

    Welcome to our group. Glad you found us.

    suzeb0606 replied to HG1948's response:
    HG1948, Thanks for the info about re-adjusting meds during an illness. I was diagnosed w/lupus 44, yes forty four, yrs ago. So tired of seeing speciaist for this, etc. Lupus speciaist now tells me lupus "fades away" after why do I still feel awful. He says its the new & popular "fibromyalgia" which I'm not convinced is a real disease; he assures me it is. Great, lupus fades away and riding in on a big white horse is fibromyalgia; wants me to start seeing a specialist for fibro...not ready to start down another road of drs appts, more blood work, new meds...nope, not right now!

    And I also notice increased pain when weather fronts come through here in Ohio...WHEN DOES IT END??

    Just keep trying to put on a happy face and positive attitude!! And I am glad I found this group also. Hope all are doing well.
    HG1948 replied to suzeb0606's response:
    Hello Suzie,

    For me it has never ended. I am 61 years old. I became ill with the very same symptoms, though less intense, when I was 39. The diagnosis of "lupus" was reached just 7 years ago. In between that time, I had many other diagnosis, and I were treated, for all of them. The only treatments that helped with my symptoms were the plaquenil and prednisone.

    I think I am just overly sensitive to prednisone, is all I can tell. I know there are people, on this board who have been on much higher doses of prednisone than I have been prescribed and for much longer. However, the levels of prednisone that used to help, have begun to cause cataracts, osteoporosis, chronic dry mouth with dental cavaties, increase eye pressure (father had glaucoma), moderate to severe edema in feet and legs (wearing anti-embolism stockings so I can sit here and type), slow wound healing, loss of 50% of my hair, a round "chipmunk like face", and chronic fungal infections in my feet, mouth, and ears.

    You understand my eagerness to find a substitute or something that will enable me to eliminate it the prednisone except for managing severe lupus relapses.

    Oh yhea, that "stuff" about lupus being the "new fibro", has some credibility because, so many people to post on the Fibromyalgia Web Community Boards have many of the same complaints that we have. A few of those people with the diagnosis of CFIDS (Chronic Fatigue Immune Dysfunction) along with fibromyalgia have died while I was a member of those boards between 2001-2003.

    Anyway, calling one disease the other sounds like when we were being told "brown is the new black", or 60 is the new 40! Please.

    I really glad to have met you. Please come back and visit with us.

    suzeb0606 replied to HG1948's response:
    HG, I know its been a long time since I posted, seems like one thing after another. Where, oh where, did the old Suzie go, who worked 2 jobs, raised a daughter, my husband & I had a good social life, etc.

    Now I can't plan anything, or if I do, everyone knows there is a probability I may cancel. HATE THAT!!! Can't even make and keep appt to get hair cut. So I need to be thankful I have hair to be hair fell out twice; once when first diagnosed at age 15 and THE NEXT TIME RIGHT BEFORE MY WEDDING!! Perfect timing!

    Fibro/lupus, lupus/fibro...who knows and I guess it doesn't really matter. Both are miserable and disabling.

    I am refusing to be "lupus girl" but I am a person who has a disease that causes some bumps along the way....we cannot let "it" own us. Take care of yourself. Suzie
    HG1948 replied to suzeb0606's response:
    My girlfriend and I have tossed this around forever.....! I still believe that I'd have remained untreated for lupus, if the red circular rash that appeared on my upper body, hadn't appeared.

    Also, the lupus symptoms, for me were associated with the onset of peri-menopause.

    My girlfriend, who naver developed any rashes, has still only been diagnosed fibro. She and I had the same symptoms years ago,and we both still do today! The only difference today, is that I am on prednisone and plaquenil.

    As far as fibro and lupus being two seperate disorders, or related, I don't care. Today, I have pain's in my muscles also with feeling like I have the flu, joint pain, and a rash. That means, according to my rheumatologist, who has fibro. herself both of the "two headed" dragons are holding me captive

    The part about not being able to make plans,from day to day, also remains very frustrating to me as well. There are things that I havn't gotten used to and some that I havn't.

    Good luck to you.

    anowlin responded:
    I'd also add that if you experience unexplained joint pain to let your doctor know of this.
    allie_bf responded:
    Another unwanted side effect of steroids: midcycle bleeding. It seems I can not take prednisone for >3-5d without triggering other hormonal problems. This becomes a problem when I have to take steroids for a longer period (usually for 3-4 weeks for pleuritis) and I have my period for the entire interval, thus resulting in anemia. Should I enlist my gyn, is it worth starting OC's with prednisone to preclude the bleeding, or will this interfere with the prednisone's effectiveness?
    mslisawilliams responded:
    Thanks for the great tips. I wish I would have had them 6 years ago. I was diagnosed with lupus in 2003 after 2 years of not knowing what I was suffering from. I was put on prednisone after my diagnoses and for me the side effects were bad in less than 18 month. I was soon diagnosed with AVN (avascular nicrosis) of both hips and shoulders from the prednisone. Both hips were replaced and my left shoulder and soon my right shoulder. Steroids need to be closely watched!!
    anowlin responded:
    The only time I've taken steroids for SLE is when I was first diagnosed in '92 and on occasion I've taken a dosepak (maybe once every two years).

    In spite of not taking them much, I developed one side effect, osteonecrosis. From the SLE, itself or from the steroids I took when I was first diagnosed, I don't know. I also have a few blood disorders, so I'm really not sure if I'll ever know the cause of ON. Annie

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