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    Old 07-19-2004, 08:33 PM   #1
    stitch626
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    Question prednisone evil??

    i know that prednisone is one of the major treatments for things involving lupus, but everyone ive ever talked to that has taken it has had nothing but horrible things to say about it. the internet has a lot of info on how it can be bad too. i was recently prescribed prednisone for a slightly irritating, but not terrible skin problem on my hands, and im hesitant to take it...seems to me that i should not take this drug unless it is absolutely necessary, in fact i would rather be in pain than worry abou some of the side effects. is prednisone prescribed for any of the fatal symptoms of lupus? should i take it for this small problem, or try to just stick it out?

     
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    Old 07-19-2004, 09:18 PM   #2
    UT_mom
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    Re: prednisone evil??

    I'm taking a lot of Prednisone right now and I'm not even sure how to answer your questions and I've had them myself. I think it depends on how you are feeling personally, how advanced your symptoms, disease, organ involvement, etc... is progressing and how you're responding to current treatment. I know from what I've heard that when you're in a flare, your antibodies are basically wreaking havoc on your body's tissues and sometimes organs. Sometimes you can pull through a flare on your own and sometimes you can't which means unlimited (???) damage possibly. Steroids can be life saving and a very important part of treatment in lupus plus they're fast acting but they come with lots of icky side effects. As of now I'm experiencing a lot which are as hard on me mentally as physically---more specifically, my face looks like a plate, I'm gaining weight drastically by the day, I'm all red, headache, etc... plus the longer you're on it then you get into side effects such as osteoporosis, necrotic joint diseases which can require joint replacement surgery, etc...

    I will say however that my current flare is headed toward 10 weeks and it has taken my life from me. I have two little boys, a job, a family, a home to take care of and I've been robbed of the kind of lifestyle I want to live and the stamina to even walk up my stairs. I've even been robbed of my ability to breathe normally and I can't enjoy an intimate moment with my husband without feeling the most intense chest pain and worrying I'm having a heart attack or something. I've been on Prednisone for almost two weeks and though the results are gradual, I am noticing results. After ten weeks, I'll trade these brief side effects for one good day if I can get it. Of course I don't want to stay on it if I don't have to BUT I also want to be around for my boys and maybe my grandbabies some day, and if I can I want to have daughters too and I will do what I need to do to prevent the damage this disease will do to my body for the sake of being around for my family and not letting this yucky disease get me.

     
    Old 07-22-2004, 05:41 PM   #3
    netangel29
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    Re: prednisone evil??

    I would just like to say that my mother was diagonosed with both types of Lupus, in 1994. My mother pretty much took predinsone every day. To me her doctors made it seem that it was a miracle worker for Lupus patients. I believe that she was overprescribed this medication. Within 6 years my mother went from a 190 pounds to 120, she was continously in pain, with some type of infections. From what I have read about predinsone, it can be very dangerous. 6 months before my mom passed away, she had osteoporosis, so bad that if she moved wrong her bone would break, she would cough and break a rib. She was in excruiting pain the whole time. She had so many side effects from taking it, but the worse result was osteoporosis. My mother was 46 when she died and 40 when she was diagnosed with Lupus, very young. My grandmother died at 35. Does anyone know if Lupus is hereditary? I pray that I never have to be in the postion to take predinsone. I think that I would definatley choose not to, I honestly feel that the results from taking this medication is what took my mom, not Lupus. Please consider other options before taking this evil drug.

     
    Old 07-25-2004, 08:37 AM   #4
    jrf5460
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    Re: prednisone evil??

    I have been taking steriods since mid-March. Every time I try to taper to less than 20mg per day, I flair! Had to go to ER last night for high dose steriods for a flair that will not quit!!

    It looks like my maintenance dosage is 20mg per day. I don't know what is worse, the disease or the cure!! It looks like I can't live without the steriods. I don't wnat to take them because of the long term side effects, but what can I do?!?

    Soryy you're having sooo many problems, but I 'feel your pain"!

    Take care,
    Joe

     
    Old 07-27-2004, 08:56 PM   #5
    UT_mom
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    Re: prednisone evil??

    Just an update on my opinions on steroids -- I've been off prednisone for 7 days now and while I felt my improvement was gradual, now that I've been off them I feel like I've been dropped on my butt. I hurt all over, my muscle stiffness is back in major full force. I haven't pooped for seven days after being regular for the first time in at least four years (and they could see no inflamation in my colonoscopy hmmm I wonder). Anyway, I'm just feeling crappy crappy crappy after I'd finally (it's been three months) got a little improvement.

    However, I will say that being on 80 mg of Prednisone, I was blowing up like a balloon with water retention. I gained 8 lbs in 2 weeks, my appetite was out of control! And worst of all, my face got nice and puffy and round and my cheeks were just killing me all the time, it's like they were hard and swollen. Those are just short term side effects and I know the long term ones are sooooooooo much worse. So I still don't know what side of the fence to sit on. I guess it's like chemotherapy, sometimes the cure is worse then the disease. I hope you're all well!!
    Love,
    Shawnee
    Oh, and P.S. I've now got a cold which I may have got anyway but could have got due to immune suppression, who knows.

    Last edited by UT_mom; 07-27-2004 at 08:58 PM.

     
    Old 07-29-2004, 11:17 PM   #6
    barchin
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    Re: prednisone evil??

    I just wanted to say that I just got off prednisone and I think that when you cut back your symptoms get worse then start to tapper off. I thought that I was stuck at 15mg but then I decided that I couldn't stand the side effects and that I would try to get off prednisone no matter what. I felt like hell each time I reduced the dose, but then after 6-10 days I would feel better. I'm not sure that this is what happens to most people. I do know that I was feeling like I was caught between a rock and a hard place. I'm really not sure what's worse. I just know that predinsone dosn't seem like a very fair alternitive. I sometimes just can't understand the reason any of us would be afflicted by this horribul illness that could make you decide such a harsh drug is better then the illness, or that it's the only hope.

     
    Old 07-30-2004, 05:34 AM   #7
    mere
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    Re: prednisone evil??

    I started on 80 mg of prednisone and was tapered to a maintenance doseage of 10 mg. Over a period of months, I noticed that I was feeling worse and worse. Then the past couple of weeks I have been in a huge flare with swollen joints, fever, etc.

    My Rheum. said that my body has built up a tolerance to 10 mg and he increased it to 20 mg for now. I am going to start Methotrexate this weekend with the hopes that, eventually, I can eliminate the prednisone all together. Otherwise, my body may become 'tolerant' to higher and higher doseages.

    I already take Plaquenil. It seems like such a constant balance between the medications and immune suppression. Not so easy.

    Mere --

     
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