Polymyalgia - is 40mg a day too bigger a dose?

Posted , 13 users are following.

My doctor has put me on 40mg a day for 7 days, then I have to go down to 35mg a day for 7 days and then I have to go down to 30mg for 7 days and so on. Does this sound normal? reading everywhere it seems this might be a bit excessive. I do wonder about my doctor, I don't have much confidence in him, but he is the only doctor in our town. He also told me to take anti depressents as I might be depressed, I told him I am very down because of the incredible pain I am in! I was practically a cripple. On the up side - within 24 hours my pain and stiffness had reduced significantly, I feel like a new woman! I was so excited to show my husband I could walk up the stairs without having to old the banister and hoist myself up.

1 like, 11 replies

11 Replies

  • Posted

    Personally, I think I'd be inclined to try 20 mg at first to see if it gives enough relief - you can always increase it if need be, and it may also relieve your depression when symptoms lessen.  Doctor may have good rationale depending on blood work, but it does sound a bit excessive from what I've been reading here Chrissy.

  • Posted

    That is a high dose, the main reason it's a bit too high, unless you've had GCA symptoms when it might even be too low, is because the higher starting dose can mask a lot of ailments other than PMR.  PMR is distinguished by usually responding to a dose between 15-20 or thereabouts.  If you don't need the antidepressants, don't take them.  Why don't you ask if you can try dropping the dose a bit sooner but maybe not in such big steps?  It's great you had such an encouraging response. The experts will be along to give you more useful advice.  You do need to stay at a dose around 15 or so, provided you have at least 70% relief of your symptoms, for at least a month in order to clear up all the inflammation, and then you start a much slower taper to find the lowest possible dose which will control your symptoms well.

  • Posted

    Hi chrissy311068,

    I started on 50mg a day end of May this year ( I have both PMR and GCA) and stayed on that for 2 months before I started the tapering plan, now down to 13mg a day. I stay on the dose for 14 days before I reduce again,  and only if I have relatively minor/managable pain and symptoms. I won’t reduce till I do, I stay for another week on that dose then try again. As Anhaga has mentioned, we are trying to find the lowest possible dose to control the symptoms, but we are all different so listen to your body and don’t reduce if you are not comfortable doing it. You will in time. Good luck 💪

     

  • Posted

    Hi,

    This is too difficult to say what dose is proper. The only experienced Dr knows what dose with which problem and for how long.

    Good Luck

    CW

  • Posted

    Hi chrissy 311068

    40mg does seem a bit high if you have been diagnosed with PMR and do not have GCA with it. You will have to keep tapering down until you get to a low dose that keeps your pain at bay.

    I always feel that docs should do it the other way round start with low dose say 5mg and build up until the pain goes that way you are not taking high doses unecessarily,,unless of course GCA is involved....my best wishes to you chrissy 311086......

  • Posted

    for PMR recommended starting dose is between 12.5 and 25mg.  You would stay on it 4-6 weeks before starting to reduce. If you dont' have any GCA symptoms, then for PMR 40mg is too high. I would ask doctor if he suspected anything more then PMR to make sure that there is no misunderstanding.

  • Posted

    chrissy311068, I was on 30 mg in the spring, now down to 12.5 mg. Take your time, I will not reduce my Phed if I am not PMR pain free, now everyone is different, but get comfortable. Try not to reduce more than 10% taper. Good luck stay positive, I stay positive and keep a smile on my face. 🙂 Good luck on your journey.

  • Posted

    Thanks everyone, all comments gratefully received. looking forward to being pain free!!!
  • Posted

    The 2015 Recommendations for the management of PMR say that the "lowest effective dose in the range 12.5 to 25mg/day, and not more than 30mg/day" should be used as the starting dose in PMR. Unlike using other drugs, using an extra-high dose does not make any difference to the course of the actual disease process - the pred has no effect there, it only manages the inflammation it causes relieving the symptoms. 40mg is the dose used for GCA and if there is no suggestion you have GCA it isn't needed.

    You will find a link here, about half way down:

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

    All that happens is that for a few weeks you are taking a higher dose of pred than needed with the attendant side effects and adding to the reduction time.

    Also in that link you will find a link to the Bristol paper - a much more usual approach used by experts in the field. 

    Perhaps he would like the links - if you decide to discuss it with him.

    I remember my miracle result - 15mg took me from crawling upstairs on my hands and knees and stomping back down like a toddler one step at a time in under 6 hours!

  • Posted

    I was diagnosed 2 years ago! Sed rate was 60, I was put on just 10mg.  I had immediate relief, but had a lot of relapses. My father died of MS, so I had to have several test to make sure I didn’t have that or Lupus! Negative on both! I did research and found that other patients with PMR also took  hydroxychloraquine, which also helps with inflammation, I mentioned it to my doctor and he agreed! Some mornings are horrible, can’t even lift my pillow! I have found that the more active I am the better I feel the next morning! I am down to 5mg now, but at one time I was down to 1mg, until my doctor went out of the country for a month and I couldn’t get my prescription refilled, I had a major relapse, replaced that doctor! I also requested water pills for my bloating from steroids, and that has helped tremendously. I lost the 20 pounds I gained taking them! 
  • Posted

    Chrissy,

            I am glad that the prednisone is working well for you. Three separate times I was started on prednisone by three different Doctors. They all started me at 60mg but had me reduce quickly ( 10 days ) to 10mg. From 10 mg it was 1 mg a month or slower. Seemed to work for me. Never had a flare-up.

     

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