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Zero Prednisone Discussion

Posted , 53 users are following.

Emis_Moderator
Emis_Moderator

At the request of users I have started this discussion for users whose PMR/GCA has gone into remission and who are off steroids. It can also be used for users still on pred to ask questions of users who have achieved zero pred. I have added information to the pinned discussion for PMR/GCA Resources https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 linking to this discussion.

11 likes, 216 replies

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  • pauline36422
    pauline36422 Emis_Moderator

    Posted

    hi emis,  this forum has been so helpfull for me.. i do keep looking to see if anyone is in need of advise. i am now in my 5 year of pmr.    now down to 1.3/4..of pred.with small amount of pain in  1 shoulder. and  around coxix  area. but  dont think its pmr pain. as its  1 side   i am going for shoulder injection   tomorrow.  but i am sure i will be in the   zero  zone  in the not too decent   future.

    wont be rushing it tho      thanks to everyone on this forum

  • Danrower
    Danrower Emis_Moderator

    Posted

    I had previously posted the following. I am still in remission, but read the forum, and you all are in my thoughts.

    Club Swagger Club Zero Club Fear

    I want to take a victory lap.

    I want to say good riddance.

    I want the objects in the rear view mirror to be 

               smaller than they really are.

    I want the 50 pounds gained and lost in the last 

               years to be gone forever.

    I want to dump my bottles of prednisone.

    But this systemic demon has bitten twice!

    Damn him for his residence.

    I asked my  rheumy a year ago:

    Will I ever get my swagger back?

    The clouds then lifted .

    slowly, weight down, pred down, 

    walk, road bike, love

    again.

    Things I thought I might never have.

    Here am I, back, but I keep the little white pills.

    Just in case.

  • margo25238
    margo25238 Emis_Moderator

    Posted

    Today, i am feeling the hopeful in a long while.  I was on steoids for two years; as of Nov. '16 i no longer use them.  It has been 

  • margo25238
    margo25238 Emis_Moderator

    Posted

    I am totally off pred since Nov. '16, after two years starting with 20mgs.  

    From Nov. to now, i have been quite 'uncomfortable', muscle, joint pain and stiffness, etc.  I am so happy today, i woke up with minimal discomfort - thanking the Universe for this progress.  NOW, yesterday i went to the driving range and hit balls for the first time in way over 2 years;  i choose to believe, my adrenals are almost awake; this was good for me - any comments?  (sipped not a drop of pino)

  • pparker1213
    pparker1213 Emis_Moderator

    Posted

    I am officially a member of the group now. I have been off the pred for 3 weeks now after an almost 3 year battle starting at 20 mg. Male age 57 at onset. Not sure where I would be today without this forum. I truly believe that doctors have little true insight into this disease and how to manage it. Sure they give youy a pill and that works like magic( at leaxst for me), but they don't tell you how to get off of it. The "dead slow" method  worked for me although it took 3 tries to get lower than 7.5mg. Once I learned not to rush to zero and listen to my body things went better.

    Many bumps along the way and I blamed prednisone for anything I couldn't explain. Dry mouth, night sweats, random itching, fatigue, heart attack ( actually didn't blame prednisone for that).

    Today I am have been dealing with foot pain that sounds like plantar fascitis, but who knows. Also fatigue in my legs that I did not have before. I have little to no PMR type pain in my hips or shoulders like I had before. I hope these new issues are signs of "old age" or being out of shape or anything but a relapse. Time will tell I guess.

    I did read here that it takes a solid year of no prednisone to get close to normal. That's what I am shooting for.

    • dan38655
      dan38655 pparker1213

      Posted

      Glad to hear that you are getting along without the need for pred.

      I'm still in the low range, well below 5mg for many months now.  Age 57 now and a little over 3 years with pmr.

      It has taken me a year to get my running gait back to where it is normal, i.e. running without pain up to 5mph or  12-minute miles.

      And that is with making the effort to run every third day, I ride a bike almost daily.  And the early-season yard work consistently causes me to relapse to a slightly-higher dosage, because it keeps me from doing as much of my preferred types of exercise.

      But I am doing better, dosage-wise, than last year, so progress is continuing.

      Good luck with your being able to stay off pred.

    • tracey81846
      tracey81846 pparker1213

      Posted

      Hi ,glad to hear u can run and that gives me fresh hope.If it's plantar that's causing your foot issue it will go away eventually , I find mine plays up when I need new running shoes.Have you tried rolling the underneath of your foot with a small bottle of water frozen.It needs to be done several times a day.found this worked the best.

    • cindy63197
      cindy63197 pparker1213

      Posted

      It seemed to take at least 6 months after finishing Pred that I really felt normal. It was a gradual return of strength, so I'd say a year until normal may really be about right to return to full strength as well as feeling well.

    • BettyE
      BettyE cindy63197

      Posted

      I'd endorse that. Six months I felt much stronger but then realised after a year the improvement continued. 

      I dug my bean trench yesterday!

    • cindy63197
      cindy63197 BettyE

      Posted

      It's hard to believe it takes so long. I'm glad you're able to pursue your gardening this year.

    • pparker1213
      pparker1213 tracey81846

      Posted

      Bought new shoes last week and I did find the frozen water bottle trick worked pretty good. Thanks
    • tracey81846
      tracey81846 pparker1213

      Posted

      Fab, glad it worked , u may have to do it from time to time, but I have found it didn't come back.

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