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    Old 02-01-2004, 06:06 PM   #1
    shyguy
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    Is there a Prednisone alternative?

    Is there an alternative to taking Prednisone? If taking Colazal and Imuran (Azathioprine) don't work well anymore, would increasing their doses a lot help any?

    Assuming there is no Prednisone alternative...
    If I refuse to take anymore Prednisone despite my ulcerative colitis flaring up/worsening what happens?

    I know first I lose too much blood and become tired and pale and feel sick and hair falls out, because this already happened to me before (anemia). Then since the iron in my blood becomes so low I can't get/carry enough oxygen eventually I would die I assume? However, taking lots of iron supplements fixed this, along with Prednisone to fix the UC bouts.

    But can I instead opt to live with the UC bouts of constantly going to the bathroom and losing blood AND take lots of iron supplements and vitamins to fights the iron/blood loss? Can that prevent anemia without Prednisone?

    I want to know ways to stop taking Prednisone, I refuse to use it anymore, or at least not have to go over my 10mg every other day. I won't go back to 30mg a day no matter what!!!! I don't care.

    Last edited by shyguy; 02-01-2004 at 06:08 PM.

     
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    Old 02-02-2004, 12:40 PM   #2
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    Re: Is there a Prednisone alternative?

    Anyone know? I have a dr appointment today and I want to be armed with facts because my dr doesn't care.

     
    Old 02-02-2004, 01:30 PM   #3
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    Re: Is there a Prednisone alternative?

    I was on prednisone before but started getting side effects from it (oral didn't work for me anyway) so I was put on Imuran along with the asacol that I had been on for awhile. Some people can't go off pred after they have been on it for awhile because their bodies have become dependant on it. I believe its something to do with the adrenal glands. My doctor told me one of the reasons I was put on imuran was to get me off the pred. Have they even tried to wean you off pred? You have to be careful of the doses you take with these meds. I can't remember exactly what they are but the max for me would be 125 mg and I weigh 110. I'm only on 75 though because a different doc said that was the max that I could go on. Hope this helps some.
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    Old 02-02-2004, 07:07 PM   #4
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    Re: Is there a Prednisone alternative?

    I was on Asacol and then switched over to Colazal (same thing almost). But then that slowly stopped working so I had to go on Prednisone. At first I took 30mg a day and that really messed me up, then I slowly went down to 1 a day after I stopped losing too much blood. Then for like a week I stopped it but since my UC came back I had to take Prednisone again and now take 10mg every other day. But now I think I will have to start taking more again and I don't want to. I started Imuran also after awhile of taking Prednisone.

    Oh also, I don't like Prednisone because of all the potential long term side effects and especially because of the immediate side effects. I normally weigh about 128lbs and I am really skinny for a guy. But after taking 30mg of Prednisone daily I went up to 140+lbs and I looked and felt like a freak. I looked pregnant. Then after going down to 10mg a day my weight went back to normal but now my face has fat on it. It looks bigger and I have a double chin. I hate it and I know what can happen next... find a recent picture of Jerry Lewis to find out.

    Last edited by shyguy; 02-02-2004 at 07:12 PM.

     
    Old 02-02-2004, 08:05 PM   #5
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    Re: Is there a Prednisone alternative?

    How long have you been on imuran for? It can take up to 9 months to take affect. It took me close to 8 months before I noticed a difference. I still have flare ups but nothing like I had before.
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    Old 02-02-2004, 10:17 PM   #6
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    Re: Is there a Prednisone alternative?

    Not sure. Probably getting close to 8 months now, if not more.

     
    Old 02-02-2004, 10:33 PM   #7
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    Re: Is there a Prednisone alternative?

    As all of you know having UC is a very serious problem and you really need a compassionate doctor and staff that will work with you to control the flare ups. Without that the quality of your life is poor to say the least.
    Your eating habits, intake of fiber and almost contant blood testing is required as part of manageing it--- but ya'll probably already know that!
    I would recommend that you find an Alternative Care Doctor to help. There are some anti-inflammatory remidies available.And a total life change is also required. Also, most Medical Doctor's don't know much about mineral and nutrient absorption to really significant help.Malabsorption is just a BIG --- BIG problem.

    And, Predisone just has too many serious side-effects for long term use. You certainly know from first hand experince!!

    God Bless---Harry

    PS I know my suggestions are very feeble but I wanted to write to let you know I care!!

     
    Old 02-03-2004, 01:01 AM   #8
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    Re: Is there a Prednisone alternative?

    Hi shyguy,

    where in the bowel is your UC?
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    Old 02-04-2004, 09:54 PM   #9
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    Re: Is there a Prednisone alternative?

    HI Shyguy, I guess by now you have been to your doctor. I have had Crohns disease for 30+ years, and I AM WITH YOU. STOP the prednisone. I was at the point that the ONLY thing that helped my Crohns was prednisone, but I decided, like you, that the side effects were NOT worth it. I was having very noticible bone density loss, "elephant hump" "moon face", and "moon belly". My face and belly and shoulders were HUGE, but yet my limbs were normal to skinny. The only weight I gained was due to the prednisone only. I began having thyroid problems, adrenal problems, etc.. ALL due to the prednisone. I was on it VERY long term, and had been on VERY high doses. I too had a doctor that did NOT care. He just kept doling out all the useless medication. REFUSED to listen to any of my suggestions, which came from a LOT of my reading and researching of my disease. My mom is a registered, licensed dietician, with a masters degree in nutrition and chemistry, yet my doctor felt her knew MORE than her. He even went so far as to tell me that nutrition had NOTHING to DO with the effects on my crohns!!!!!!!!!!????????????? WELL, due to the lack of gastroenterologists in my area, I stayed with him. But FINALLY I just stopped going to him. I have been seeing a GP for years now. I feel better than I EVER have, and a LOT of it is due to the fact that he listens to me, lets me try things, and even joins me in my reading and research. He is GENUINELY interested in my well being, and he does all he can to help.

    I TOTALLY agree with Harry. It is IMPERITIVE that you have a compassionate doctor that LISTENS to you, and is willing to look at things OTHER than just pharmaceuticals. There are a LOT of natural/alternative treatments out there that WORK. I know, I have been using them. I also must still rely on some pharmaceutical medicines, as there just arent natural or alternative meds that work for me in some instances, but for the most part; my diet, natural supplements, and a genuinely CARING doctor, have made me a MUCH healthier, and without a DOUBT, much HAPPIER person.

    Good luck to you shyguy. We care about you.

    God bless and take care. Please let us know how you are doing.

    Suzi

    Last edited by suzi47cmt; 02-04-2004 at 09:57 PM.

     
    Old 02-04-2004, 10:07 PM   #10
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    Re: Is there a Prednisone alternative?

    Suzi-- I am impressed with your message. I have been around awhile and I don't get impressed easily --You message should be framed --
    Thanks---Harry

     
    Old 02-05-2004, 10:45 AM   #11
    shyguy
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    Re: Is there a Prednisone alternative?

    Thanks for the responses.

    I don't mind taking any medicine except for Prednisone. So what alternatives do you suggest and does it actually work?

    I am weak and worn out right now from flare ups and I only take 10mg of Prednisone every other day and don't even want to take that. My bloodcount is down to 10, and I know one time last year it was down to 5 which is why I had to start taking Prednisone.

    My Dr said I should try 3 750mg Colazal 3 times a day, but I know this will not work (I was taking 4 twice a day before) to stop the flare ups. I know taking more Prednisone will fix it, unfortunately, but I don't want to.

    I also take a calcium supplement, a One A Day pill and some iron supplement pills. Sometimes I take Acidophilus too.

     
    Old 02-05-2004, 01:34 PM   #12
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    Re: Is there a Prednisone alternative?

    Hi again Shyguy,
    Just a second here to say thanks to Harry for the compliment on my first message to shyguy. Nice to be appreciated for just being myself and being honest for a change. LOL

    Now, shyguy...after all my years with this disease, I must say that there IS no REAL "alternative' to prednisone. It is a corticosteroid. It's PRIME function is to reduce inflammation. PERIOD. The rest of what it does to the body is DAMAGE.

    Some things that will help to "sooth" the smooth muscles of the digestive system are: peppermint, in the form of peppermint tea, or capsules which contain peppermint oil. I, cannot use these, for some reason they upset my stomach, BUT... I am the MINORITY on that, as I have read TONS of people on here using peppermint tea and/or oil and getting a LOT of relief. The other thing, which I use when I am having a lot of pain and upset in my belly is Chamomile tea. I have not seen a lot on here about this, but I KNOW it works for me. Neither of these remedies will help actually reduce inflammation. They WILL reduce cramping, some pain, and spasming.

    Putting your bowel to "rest" will also help. By this I mean, eating things that do not require much from your digestive system to digest. Some of these things include boiled rice, mashed potatoes (both of these PLAIN, NO BUTTER or FATs). Also, PLAIN, BOILED or MICROWAVED chicken breast, NO SKIN. Eating NATURAL culture yogurt is also very innocutive and very good to keep that natural bacterial balance in your gut, but at the same time not upsetting it with milk sugars and fats. These are broken down in during the culture process of the yogurt.

    I know this may all sound SO bland, but I GUARANTEE you will feel MUCH better, your belly will stop growling and rumbling, and things WILL quiet down. The thing is, you may have to eat like this for quite awhile, so.....

    I do so much of this therapy as just a matter of life now, that I have to stop and REALLY think, in order to pass on advice. Give me a day or so, and I will look back on my journals and see what else I can dig up for you.

    In the mean time, take care, NEVER NEVER give up, and just get on here and type if you need us.

    God bless.

    Suzi

    Last edited by suzi47cmt; 02-05-2004 at 01:38 PM.

     
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