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Thread: Long awaited Rheumy Appt.

  1. #1
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    Default Long awaited Rheumy Appt.

    Hi everyone!

    I have my first rheumy appointment in over a year next Tuesday (I know, I know... I went through my "I'm young and if I pretend like it's not there, it won't be there" phase and paid the consequences for it.)

    Many of you have helped me through my mystery symptoms and discouraging hospital visits, I was hoping you might have some insight on how to get the most out of this appointment.

    I'm going to compile a list of the abdominal and gastrointestinal symptoms I've experienced chronically and voice my concerns about my inexplicable weight gain (this is hard for me, because I'm extremely healthy and work out whenever I can!)

    Is there anything else you'd recommend? Any lab tests I should request (other than ANA and the usual...?)

    Also, lastly, this is my worst fear and a big part of the reason I have been avoiding the rheumy: I'm horrified to be put back on Prednisone. The drug made my life hell and much worse than my Lupus without it. Is there are substitute for this drug? I really don't think I can bring myself to take it again after the physical and mental havoc it put my body through last time.


    Sorry that was kind of a novel. Any help you can give will be greatly appreciated!

    xoxo
    kirsten

  2. #2
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    Hey there kirsten
    I hope the appointment goes well for you...
    As for the prednisolone.
    I have the same concerns as you, i have ITP caused by lupus (low platelet counts), and for the last 3 months i was on prednisolone. I noticed symptoms returning after i had come off the pred, and i was scared to call my hematologist incase he said to go back on it. I told him in no uncertain terms that i really didnt want to go back on the pred, and he actually agreed with me and said that he understands why i dont want it again, and that it is not a good long term solution anyway. So now i have a few other options that he has put forward for me to think about, currently trying to get into some clinical trials.
    Guess what i was tryign to say is to let your rheumy know about your pred problems (god knows i think its the worst drug created in terms of side effects) and he may be able to give you some alternatives.
    I hope everything works out for you, and good luck!!
    *~* Monique *~*

  3. #3
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    I can definitely relate to you going through the " ill ignore it phase " I was there and learned quickly that, that was the wrong path to take, if you workout thats very good for starters, do you eat pretty well, like healthy things? Ive been on prednisone for about 9 years and I havent had any significant weight gain or any unless I had a flare and they needed to increase my dosage. But the weight always goes away. A low dosage should be fine, like 5mg or 10mg. I hope your appy goes well

    Chriss
    Live, love, and most importantly be grateful!!

  4. #4
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    You're so lucky Chriss!
    I was only on prednisolone for 3 months, and i put on 6kg in that time...i have been off for i think 2 or 3 weeks now, and i have only lost 2kg...ughh lol. I wasnt even eating badly, i was probably eating better than i have for a long time!!
    *~* Monique *~*

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