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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

216 Replies

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  • Daniel1143
    Daniel1143 Emis_Moderator

    Posted

    Tina,  congratulations on your march to zero.  I arrived there about nine months ago and have stayed off since then.  That said, I do not believe I am fully in remission.  Only sufficiently so to remain off of prednisone.  I do still have modest flares, particularly when flying or when my biorhythms are off due to inconsistent sleep cycles or jet lag.  The relvelatin for me was that zero prednisone did not equate to zero PMR. That said, I am functional and grateful for the improvement 
    • EileenH
      EileenH Daniel1143

      Posted

      I think it is likely it is your body getting back to normal - if it were the PMR it would build up until you had symptoms. But the adrenal function remains wobbly for up to at least a year after stopping pred - and that would fit with the situations you find more difficult.
  • lora_33567
    lora_33567 Emis_Moderator

    Posted

    Thank you for the this wonderful way to communicate with those if goin wit with PMR! I am in 5 and hoping to reduce to 4 1/2 within the few weeks. Not perfect but better. I have been dealing with this for 4 years now after getting the flu shot. My Rheumatologist says no but....He also keeps telling me to get off prednisone and start Methotrexate which I am not doing because no research has proven that it helps with PMR. Why take one toxic medication to replace another?  Needless to say I don’t have much faith in my Rheumatologist. Very frustrating. I attempt to exercise however there are days that I am unable to move well until noon or so but I do try to walk as much as possible. Again thank you all for letting me know that I still have a chance to get offbeat the prednisone.
    • Daniel1143
      Daniel1143 lora_33567

      Posted

      I also got PMR shortly after a flu shot.  Would be very interested to know if this is common.

      As for methotrexate, I would be very cautious. For some it is thought to help with tapering off prednisone. It is not a prednisone replacement, and it’s known side effects are frightening. Did zero for me, and I stopped methotrexate 

    • EileenH
      EileenH Daniel1143

      Posted

      I think there are quite a few people who developed PMR after a flu shot - but equally, an awful lot of us who had never had a flu shot in their life. I hadn't. But since the underlying cause of PMR is an autoimmune disorder, what probably happens is that for some people the flu shot is the final straw that sends their immune system into a tailspin. For someone else it could be an operation, or an accident or severe emotional stress - so many different things have an effect on the immune system.

      I have to say - I wish I knew why any rheumy would say "get off pred and go onto mtx" - that isn't the way it might work. You take both and MAYBE you MIGHT get off pred more easily. Or maybe not. If you could stop pred - you wouldn't need the mtx! 

    • karenjaninaz
      karenjaninaz Daniel1143

      Posted

      Looking back I had PMR symptoms shortly after nearly dying from a small bowel obstruction in 2012. I had intractable bilateral hip bursitis and then the shoulders started. In 2015 I had a flu shot in one arm and the Prevnar pneumonia shot in the other arm.  About 8 days later I started to feel terrible with being unable to even turn in bed. I think, perhaps, the immunizations tipped me over into recognizable PMR which was waiting to happen.
  • sharon21683
    sharon21683 Emis_Moderator

    Posted

    Hi All..

     I haven’t been on this site for a long time, but since people are talking about being Prednisone free I thought I’d speak up. My story is much the same as Oregonjohns. I came down with PMR in April 2015 shortly after retiring. I was never on anything higher than 15mg. And most of my journey through PMR was controlled with 5mg.  By December 2016 (1 Year 8 mo. After diagnosis) I was down to 1/2 mg Prednisone a day using Eileen’s method.  Jan 1, 2017 Happy New Year to me.... I was at 0! And feel great after a little over a year off Prednisone. I also should say.. my Mother had PMR for a year about the  same age, 62.  So everyone, there is a light way down that tunnel!!

     Peace, Sharon

  • sharon21683
    sharon21683 Emis_Moderator

    Posted

    I forgot to mention in my above letter that my last Physical 10/23/17 ..my Erythrocyte Sedimentation rate was 10 standard range is 0-20. My Rhumy was very happy!!
  • Elijo
    Elijo Emis_Moderator

    Posted

    I had PMR about 2 1/2 yearss.  About 3 months ago I discontinued taking .5 mg pred and have been clear of PMR.  I was started on 40mg. and did pretty well throughout, with some flares when I would reduce.  I did have many side effects from the pred, but the good one is my nails which were paper thin and broke and split easily.  They are now very strong.  When I was in rehab for over a month, they were never cut, they grew, and were strong!
  • anne28129
    anne28129 Emis_Moderator

    Posted

    Hi

    I was diagnosed last November and have managed to get from 40mg to 10mg of prednisone 

    Each day is a new day and I have suffered with lots of lower leg pain but, recently that’s gone and has been exchanged for aching arms and neck pain! I have also started to have headaches which stopped last November once I took the steroids 

    I really want to get off the steroids!! And return to me!!

  • BettyE
    BettyE Emis_Moderator

    Posted

    I have been in remission for over five years and post on this thread because, although Hope only comes second after Faith ( but before Charity ), we need all three and in this case I think we have to allow the charity to be for ourselves. You are not failing because your symptoms have returned. Those of us who are in remission tell our stories to illustrate that there is every reason to hope.

    I often read posts from people who are beating themselves up because their " recovery" has not gone in a straight line. At this time I have an especial interest, my much younger sister having been diagnosed just a year ago. She has reached the stage of feeling disappointed at her need to increase her Pred. due to returning pain and fatigue. As is so common, she reduced in a smooth line from 20 to 7 but has had a month of yo yo-ing in order to control her symptoms and is now back on 12. Pred. is not a medicine that we take to cure the illness but to control our pain and give us a tolerable life while we wait for the condition to resolve.

    Best wishes to you all.

  • jacqui35798
    jacqui35798 Emis_Moderator

    Posted

    I wish there were a forum as well in the US, but it is funny that you all are from the UK, and my entire ancestry is the British Isles, all inclusive.

    I will purchase the book and DVD.

  • jacqui35798
    jacqui35798 Emis_Moderator

    Posted

    Thank you. I know I am too low, and especially when the stressful situations in life happen.

    I wish the Rheumatologists under the "stress" factor. They look at me like I am crazy that under very stressful situations, I relapse some. I ended up just going to my GP who is an MD, PhD and is really intelligent and can see the big picture.

    My other go to Dr. is my eye doctor who is also a neuro opthamologist and both his mother and aunt had PMR and understands it very well. He told me there is nothing wrong with going up a milligram when needed. He says he always tells his students if they want to be a good doctor, listen to the patient!

    I enjoyed the video where the woman discussed the weight gain and how she didn't like what she saw, buit the outter weight gain and hair loss is nothing compared to feeling better on the inside.

    I really appreciate the comment about the steroids protecting the arteries.... I have to keep that mind.

    All best,

    Jacqui

  • Silver49
    Silver49 Emis_Moderator

    Edited

    I have now been steroid free for over 6 months. My weight has reduced by 1.5 stone and I am continuing to cut carbs but my appetite has also reduced accordingly since coming off pred. I did have withdrawal pains much later which almost drove me back on to steroids but which I stuck out. I am now pain free unless for some reason I have a sedentary day......not through choice but by default. Not much else to say but sleep pattern has only just settled as I had broken sleep or couldn't get off to sleep. I feel that was due to the steroids knocking my normal sleep pattern. I don't know if others found the same.

    • Anhaga
      Anhaga Silver49

      Posted

      Well done!

      My sleep has been very good for several years now except, not surprisingly, while we were in the midst of the renovation from hell slightly over a year ago. I credit a bedtime dose of calcium with a small snack for breaking my lifelong pattern of insomnia! I slept better when starting pred because I was not in pain any more. 😃

      Your example is a model for me. Having a bit of trouble getting from .5 mg to zero. Back on 1 mg for a little while then will try again. Should I stick it out? I spent three months tapering from 1 to .5 so didn't think the returning slightly more than niggles would be pred withdrawal.

    • dan38655
      dan38655 Anhaga

      Edited

      Anhaga, I did look at the numbers for my pred reduction over the last six years, and what I found was that I had reduced at the rate of about 25% each year.

      Also note that I tested the limits of how low that I could go many times along the way, and that I always had to make seasonal adjustments (more pred in Summer, less pred starting in the Fall)

      So it makes sense to me that at this point (I am currently at 1.5mg for several months, pain-free), any reduction should not be so large in proportion to my current dosage of 1.5mg.

      This means that I will at some point be cutting tablets into .25mg pieces, in addition to staggering between 1.25mg and (what will be my former) 1.5mg dose.

      I feel that I will be doing quite well to be taking only 1mg a year from now, if I can step down my dosage at just the right rate.

      I also have seasonal fluctuation to deal with, so by summertime I expect to have to up my dose to perhaps 2-2.5mg for at least a few months before returning to my current level. I will pursue reduction from there around October if the last five years are any indication.

    • EileenH
      EileenH dan38655

      Posted

      Is the summer increase so you can do more or something else?

    • Anhaga
      Anhaga dan38655

      Posted

      I went from 15 to 3 mg in my first year (2015-16). Since then I've been mostly at 2 - 2.5. Only recently have I succeeded in getting below 2 for any length of time, so in a way I'm happy to be at 1. It was disappointing when .5 didn't seem to be enough, especially as I'd tapered that .5 mg over the space of three months and it was only at the very end of the taper that things started to go pearshaped.

    • Silver49
      Silver49 Anhaga

      Edited

      I have tried replying on my ipad but it's playing up. I have solved the sleep problem with a herbal tea and a book which has a soporific effect!

      I had difficulty determining what was withdrawal and PMR at the .5/1mg and just fiddled about at the edges before just going for it and stopping. Best wishes.

    • Twopies
      Twopies dan38655

      Posted

      i have to go up in the sunmers too--cant figure it out.

      so when you go up to 2-2.5, how will you go about reducing again? ive just used the 83-84 method all over again which means im not reducing too much. i get that you need what you need, just curious about your reduction plan. thanks!

    • Anhaga
      Anhaga Silver49

      Posted

      Thanks. I didn't think I could just stop, things weren't too good for a few days. I can handle the "niggles" but this seemed to be more. Maybe next time? 😏

      Thanks for your encouragement.

    • Twopies
      Twopies Anhaga

      Posted

      sorry, couldnt remember whether the dsns long method was 83 or 84 days. its the one linked at the beginning of this forum. 6 old, 1 new, 5 old, 1 new, etc.

    • Anhaga
      Anhaga Twopies

      Posted

      Haha, I've never actually counted the days. But that seems like an awful lot of days for one taper. I visualize it in weeks. Four weeks is only 28 days (four day start stop), six weeks 54 I think (six day start stop). I estimated three months when I did each step twice, so roughly 90 days, twelve weeks. Do you do each step twice?

    • Twopies
      Twopies Anhaga

      Posted

      no. you do 1-6, 1-5, 1-4, etc. on the first phase and then once you get to 1-1, you start down with the old dose: 6-1, 5-1, 4-1, etc. once you get to all new dose, you stay there for 30 days before trying the next taper. thats how i got the 83 days. its the taper listed at the front of this forum. i count the 30 days at the new dose as part of the 83 taper because i dont start the next taper till then, and then only if i feel ok

    • Anhaga
      Anhaga Twopies

      Posted

      I wasn't counting the staying on the new dose for a month. Just the time actually tapering.

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