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Back on Prednisone

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mike42494
mike42494

I am a chronic pain patient for over 10 years now from 2 failed back surgeries. I was regulated on Schedule 2 narcodics from a Major hospital pain center in Chicago since the day of surgery in 2006.

when I moved to Florida in 2010 I went to 5 pain management doctors and not one was interested in my medical history even though I brought over 300 pages of history to show them.

only 1 doctor would even dispense pills and she took me off all schedule 2 narcotics. My pain level increased and I finally had my primary care doctor dispense my drugs until the laws changed and he could not dispense any long term drugs in florida.

in January of this year I started on Prednisone, 20mg daily and within 2 days 95% of all my pain went away. I still took my other 5 prescriptions for nerve damage but it was like a miracle being pain free after 10 years. After 2 months I was weaned off the Prednisone and within a few days all my pain returned. As of yesterday my doctor prescribed Prednisone once again 20mg. This time for long term use. I am weaning off all my other meds. I know the side effects including the weight gain, i gained 20 lbs in 2 months I was on it, but being pain free far out weighs the side effects in my case.

0 likes, 5 replies

5 Replies

  • EileenH
    EileenH mike42494

    Posted

    I suggest that you go and have a look at the Polymyalgia Rheumatica and GCA forum: 

    https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

    where you will find this post:

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

    which gives you links to loads of info about what it sounds very likely you have.

    You can probably help the weight gain a lot by cutting carbs - I have lost 36lbs of pred weight over 2 years doing that and others have avoided weight gain in the first place or lost weight doing the same. Once you are realtively pain-free you can start to move again - and that also helps.

    The rest of the advice - come and join our happy band where you will find a lot of US participants including some in Florida.

    • anapp
      anapp EileenH

      Posted

      Hi Eileen,

      Just wondering if you lost weight while still on Prednisone?  In total, I have been on it for over 4 years, for two different diseases.  Only went as high as 20 mg the first disease so little to no weight gain.  This current disease went as high as 60, had the horrible moon face but weight gain of only about 15 lbs which is still too much for me.  The monthly reductions in mgs. make me extremely tired and my activities have been drastically reduced making losing weight difficult.  Am hoping it will help once totally off Prednisone.

    • EileenH
      EileenH anapp

      Posted

      Yes, I had been switched to (up to) 20mg Medrol and had put on shedloads of pred fat in addition to what I had put on due to inactivity due to PMR without pred which had then rearranged itself on pred.

      When I was then switched to prednisone I also cut carbs drastically - and lost 38lbs of fat, especially around my middle and the face/back of the neck stuff. I've put on a couple of pounds again but am definitely no longer "Cushingoid". It can be done but you do have to be pretty disciplined.

      Have you tried spreading your monthly reductions over a few weeks? It has worked well for a lot of people, me included (until my current flare). You'll find the concept in the replies section of this thread:

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

      as the "DEad slow and nearly stop" approach.

       

    • anapp
      anapp EileenH

      Posted

      Wow...wish I'd known that awhile ago.  I've been reducing 1 mg. a month and having to go back up occasionally.  Was stuck on 4 mg for several months.  Now finally just starting 1 and hoping symptoms aren't coming back.  I had PMR first time around.  Just finished my doses when I contracted TA which is a relative of PMR.  I will try that dosage schedule if I have to go back up again.  As for the weight...unfortunately, I used to keep it off by lots of walking and activity.  Now too tired from withdrawal and can't walk that far.  Although I try to eat healthy and usually succeed, I'm not really good on cutting carbs (my favorite things).  Thanks much for the info and congratulations on your weight loss while on Prednisone. 
  • anapp
    anapp mike42494

    Posted

    Hi Mike,

    Sorry about your troubles with your back.  As a sufferer of back pain, I sympathize with you.  I had a waistline back fracture/crush a couple of years ago, partially due to the fact I was on high dose Prednisone which contributes to Osteoporosis which I already had.  Since the fracture healed, my pain has usually been intermittent, but awful and sometimes long lasting when it comes.  Prednisone does not help me for that.  Glad it does for you, but weight loss is one of the least side effects.  There are a multitude of bad ones, including osteoporosis. Just something to keep in mind. Best of luck to you.

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