Down to 3 mgs and feel awful

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Started at about 15 mgs of Prednisone 3 years ago for PMR. Was just reduced from 4 mgs to 3 in the last week. I feel awful! I periodically get severe acid reflux, belly pain, and pretty much have chronic diarrhea. My thick hair has thinned, I have excess fat around the waist and lower back, and I’m seriously depressed and often feel hopeless . I would love to know others views on tapering Prednisone.

 

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  • Posted

    Hi Bert

    I have been on Prednisone for two years now I have Chronic Urticaria. My doctor has me go down on the Prednisone 1mg at a time for a few weeks before going down another 1mg.  The key is to go down very slowly so your body can make the adjustments...that is so important.  I am now down to 2mg....tomorrow I will only take 1mg then 2mg the next day then 1mg for a couple of weeks then I will do 1mg each day for a couple of weeks.....then will do 1mg every other day for a couple of weeks.  Lord willing if I am hive free I'll do 1mg then skip 2 days....and so on.  She has ordered me 300+, of the 1mg tablets.  I have had no side effects or weight gain.  I hope this helps.  That is how I have been coming off Prednisone.  I only hope I can go into remission and will no longer need it.  It has been a blessing  though as it has kept the hives away.

    keep us posted.  We are all here for each other.

    Wendy

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    • Posted

      Wendy ,

      I probably didn’t explain my situation very well. My Rhemuatologist had started me on a slow taper . I,started out at 15 mgs and over the past 3 years have tried to wean. With my doctor’s help I was down to 5 mgs , then 4 and now 3 . i’ve  been on 3 mgs for about a week and on Sunday had terrible acid reflux, belly

      pain and I’ve Had chronic diarrhea since all of this started 3 years ago. I was wondering if anyone else had suffered from this while tapering. 

      I appreciate your help and hope to get off this drug as soon as possible.

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    • Posted

      Hi Bert

      could you try to alternate 3mg 4mg 3mg 4mg for a couple of weeks.  How were you while on 4mg?  Are you taking any other meds besides the Prednisone.?

      About the hair..... My doctor had me try  Singular with the Prednisone and I ended up losing ALOT of hair a couple weeks later!....when the singulair did not help the Urticaria I stopped taking it and my hair stopped falling out!  Your hair will grow back. 

      I have experienced the emotions before when going way down on Prednisone  but so far so good this time as I'm going down so slowly.  Have you shared your doctor how you are feeling?  What is he saying about the diarrhea.and other symptoms?...is the going down on the Prednisone the only cause?  Unfortunately, I have the reverse problem...constipation  and may be due to having to also take 2 Allegra a day one in AM and 1 in PM.

      Prednisone has been a huge blessing keeping me hive free but I know long term is not good as I have been on it so long. Has it helped the PMR?

      Hang in there Bert you will get through this. Please keep us posted.  I hope you will get other bloggers to share with their wisdom.

      Wendy

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  • Posted

    You need to see your doctor - and possibly increase the pred dose again slightly in the meantime. You are showing typical symptoms of poor adrenal function. Once you get below a pred dose of 8mg or so your body has to start making cortisol again to top up the dose of oral pred to the level the body needs to function.

    But if you have had the diarrhoea all the time - what other medications are you on besides pred?

    Tapering pred must be slow, especially once you get below about 8mg - no reduction step should be more than 10% of the current dose so now even 1/2mg at a time is a bit much. This is a link to the PMRGCA forum on here and in the replies to it you will find a very slow reduction approach that has helped a lot of people get lower on pred than any other way: If you ask on the forum there you will find others with PMR who struggle with reduction.

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

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