Tapering off 0.5 mg of Prednisone, any suggestions?

Posted , 11 users are following.

After 15 months I am down to 0.5 mg of prednisone. My new young MD wanted me to stop medication after I got down to 1 mg/day for a month, but after 10 days my symptoms (lower leg swelling) returned. I took 0.5 mg a day and the symptoms went away. Since this was a relapse after 10 years, I know the new Doc isn't tapering me down like my prior doctor did. Any of you have a tapering plan you used to get from 0.5 mg to "0"?

0 likes, 11 replies

11 Replies

  • Posted

    Hello Andre,

    I went down to a quarter mg every day for a few weeks, and if everything was fine, then a quarter every other day for a few weeks, and then every couple of days. I know it seems like such a minuscule amount to be bothering with, but I did notice it if I tried to rush.

  • Posted

    A friend of mine who has had pmr for a long time said she had a little return of pain when she went to zero so she stayed on 1/2 for about 3 months, then went to 1/2 every other day.  Next she will try every 3rd day to see how that goes.  Keep plugging, you are doing good!
    • Posted

      Thank you, and hope it goes well with your friend.
    • Posted

      andre68439

      I am new to discussions. I have been diagnosed with PMR and RA. The PMR affected both upper arms and shoulders when it first started suddenly one morning. That was a year ago February.  I was diagnosed with PMR after increasing symptoms and put on 30 mg Pred in April  2017. My pains all went away. Even my achy knees. But in September I had a very bad case of Sciatica where I could hardly walk and because I was already on steroids the doctor didn’t give me anything else for it except over the counter pain Meds which did nothing. I was in a wheelchair for two weeks so my GP finally upped my Pred to 60 mg. For a week. That finally helped the pain go away. I tapered back to my 30 mg. However I began to have back pain about the same time and my GP nor my Rheumatologist would do an MRI because of insurance. Finally after several weeks of not being able to stand to do anything or bend without sever pain intent to the ER and after they did a CTscan they found I had a broken T7 vertebrae.  Kyphoplasty surgery followed a few days later. The bandages were barely off when I had sneezed and broke T8 and had surgery 4 weeks later. Then Like the first one I don’t know how I broke T9 and one month later had the third one repaired. Of course I had to come off of the prednisone

      Because of severe osteoporosis and start on Tymlos injections for 18 months.  Unfortunately All my pains have come back with the addition of the worst! My hands! From my wrist to the tips of my fingers. Crippling pain! Swelling. More in the right than the left but the left is starting. Now since I started the Tymlos and quit the Pred I went to a new Rheumatologist and he did new bloodwork and my Sed Rate for RA was 37. He put me on methotrexate. I have taken 4 doses. I take xstrength tylonol too. It doesen’t seem to help

       much. Today was terrible with the pain in my hands and upper arms. My hands are useless most of the day. Driving is impossible. Gets a little better in the afternoon.  The pain isn’t in the joints or bones! It’s in the tissues of my arms and hands. If I strain my arm muscles the pain shoots through the muscles and seems to pulse down them. I can’t reach behind me. I think this is the PMR not the RA. I describe the pain I have in my hands as the toothache in my fingers. Any advice you can give me as to Meds would be appreciated. I go back to my Rheumatologist this Friday. I feel

      Like an invalid. Until September I was the main caregiver of my mother and until January of my father. I have had to place both of them in facilities. My father is 92 with Alzheimer’s and my mother is 87 confined to a wheelchair. 

  • Posted

    I'd start by trying missing a dose every few days - say one in 4 days,, then if that is OK, go to 1 in 3 days, 1 in 2 and so on. Then build up the space between the dose - 2 days, 3 days. At this dose there REALLY is no hurry - and you are at a brilliant place!!

    • Posted

      Thanks Eileen. Also for your comments re GPs, Rheumatologists, and years to cure. I live in the USA, was born in Amsterdam and discovered my first cousin in Holland has it as well and at the same time. She also said her GP said it may take 4 to 5 years to get off the Prednisone which surprised me from what I am told here by my MD's. Then again it is more common in northern Europe than here so I guess they have more history with it. My only concern with prolonging it is bone density issues. Have you heard if it is as much of an issue at this low dose (0.5 mg) ?

    • Posted

      EileenH, when tapering off from .5 why could you not use 0 as the new dose in the DSNS taper and treat it as any other taper? ☺️
    • Posted

      It isn't. Nor is anything else:

      https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

      That's from a top PMR person at the Mayo and it was presented recently at the ACR meeting - and quite a big thing made about changing the attitude of rheumatologists to PMR and pred.

      Your body naturally produces about the equivalent of 7.5mg pred in the form of cortisol - so once you are at 5mg it is being topped up or you wouldn't function. Your current dose is nothing - but you would be surprised at how many people find 1 mg is the difference between being fine and not.

    • Posted

      You could - I was in a hurry but that is basically what I said. 

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