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Asked to cut dose by half

Posted , 10 users are following.

pat73046
pat73046

I was started on Pred. Jan 9 2015. First 10-then 20 Then 30mg. Have gradually reduced to 15 mg and due to labs being normal she wants me to cut the dose to 7.5 mg. No gradual decrease. This doesn't make sense to me, as I decreased by 1 mg at a time 3 years ago. Her reasoning was that my sdimentation rate and crp came down more quickly this time. I think this will be a disaster Eileen what do you think? She mentioned I might not have PMR . She is a nurse practioner in practice with the rheumy. I just cut my dose to 10 mg and have more pain than before. Aching cramping sensation in left shoulder, biceps,left firearm, and across upper buttocks--sacroiliac area bilateral. I am so confused. I thought the purpose of the Pred was to bring these values down and control pain., I told her today I would go to 7.5 but I don' t feel good about it. Thank you. Pat

2 likes, 17 replies

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  • paula63201
    paula63201 pat73046

    Posted

    Hi Pat,

    Did 30 mg of Prednisone help you? Did you still feel pain? 

    • pat73046
      pat73046 paula63201

      Posted

      No I felt great no pain at all.thank you for answering.
  • andrea93419
    andrea93419 pat73046

    Posted

    Hello Pat,, well I'm up at this unearthly hour of the morning!! My doctor has started to taper from 20mg to 17.5mg and I'm aching so much this week!! Sorry I can't be if any help to your request, I, as you, should wait for Eileen to come on line she is certainly the lady I look to for help!!! I'm awake due to steroid allertness!!! It's a pain!

    Take care xx

  • snapperblue
    snapperblue pat73046

    Posted

    Hi, Pat:  I think you know your NP's suggested redcution is nuts and is likely to result in a major flare-up and that you will then need more than 10 mg to get it under control.

    The point of prednisone is not to get the labs normal, it is to control your symptoms (inflammation and resulting pain) until the underlying disorder goes away. (I ran this Eileen-ism past my rheumatologist and he endorsed it heartily.)

    That fact that you are experiencing pain now suggests that your current dose is not controlling the inflammation.  Why on earth would reducing the dose be a good idea?  Wouldn’t you expect the inflammation and pain to get worse?  Perhaps you could ask your NP to explain her logic and to tell you why she would not expect a major flare-up from a reduction in dose when you are already having a lot of pain.  If her objective is to lower your exposure to prednisone, having a flare-up won’t really accomplish that. 

    I hope you will talk to the doctor before reducing your dose.  

     Sorry to be so cranky, but tales like this are SO frustrating!  Why doesn't she just ask you to shoot yourself in the foot!

     

     

    • pat73046
      pat73046 snapperblue

      Posted

      Hi. Thank you for saying everything I feel. I did question her reasoning and she said getting me off Pred. Was her priority with the labs normal But they have only been normal once. Makes no sense to me either. I told her before they had tappered more slowly. Pat
  • erika59785
    erika59785 pat73046

    Posted

    Pat, my goodness.......this is too much of a decrease.  She is a nurse practioner and might not know what is involved with PMR and a sudden decrease of prednisone.

     Eileen will tell you in a few hours.  I am so sorry to hear that you are in such pain!  Sacroiliac pain is horrible!  Can you walk?  I hope you can sleep!  My heart goes out to you!  Hugs, Erika

  • Mrs.Mac-Canada
    Mrs.Mac-Canada pat73046

    Posted

    Hi Pat,

    It sounds like you are not new to PMR if you have been taking prednisone for three years.  I might have misunderstood what you meant😕.  Have you had PMR for three years?  If so, have you been under the care of the same doctor/s?  

    You're right to question the reduction scheme suggested by your doctor especially with your continued symptoms.   Your blood work is better because the prednisone is

    doing it's job not because the PMR is gone.  Sounds like you are in a situation like many others where your doctor does not understand PMR.  I'm sorry I can't attach some very important reference  links for practioners and patients but Mrs. O or Eileen will post them for you and you can take the info to your doctor. If she isn't willing to

    read and learn from them it is time to find a new doctor that will listen and HEAR you.  Sorry, but I'm having an impatient night and have trouble accepting incompetent doctors that prolong this taxing disorder.

    This forum has been more help to me than any doctor and you can rely on the expert information and experiences of "the Club" to help you through.

    I hope you find the help you're looking for very soon.

    Hugs, Diana🌸

    • pat73046
      pat73046 Mrs.Mac-Canada

      Posted

      Thank you for your kind words. Yes I am no stranger to PMR and I stopped taking any drugs for this about 2 years ago. This first time around in 2008 I needed to take placguinil as well as Prednisone. My used rate was 64 to start and when this finally got down in normal ranges it was with the help of placguinil. I had both hips replaced for avascular necrosis sept.2009 and Feb. 2010. He always stressed very slow teapering. I will call main Dr. On Mon. I really appreciate your collective knowledge. This forum is the best. Pat
  • EileenH
    EileenH pat73046

    Posted

    No - is there no way you can get a different care plan? This woman obviously doesn't understand PMR - and unless she can come up with good grounds for it not being PMR a reduction like that will just make you ill, especially if you are already in pain. Of course your sed rate and CRP are lower - the pred is keeping them there. If the pain is returning there are various reasons, drops of that size are going to cause withdrawal pain and have also probably taken you to a dose that is at present too low to control the inflammation.

    I'm absolutely with snapperblue and Mrs Mac on this - they've said it all so I won't say it again. To reduce to 7.5mg between January and now is crackers - it is almost certain to cause a flare. Either you see the rheumy - not a nurse who obviously doesn't know her background to do the practitioner job she's supposedly doing - or you seek a different practice. The sed and CRP came down faster probably because you were given a bigger dose and quickly - but the blood tests are never the guide. It is the symptoms that remain king and you have symptoms. The pred is to manage the symptoms - irrespective of blood tests which are only ever a guide.

    But I will also add - find a Bowen practitioner and have a few sessions. Alternatively a physio may be able to mobilise the myofascial pain syndrome trigger spots I'll bet are present in your shoulder muscles and in your lower back and are most likely causing the current pain by irritating nerves.

  • kay56703
    kay56703 pat73046

    Posted

    Hi Pat

    like you, I was on 20mg of pred back in Jan but trying to reduce even though in considerable pain. This was due to moving house, which was horrendous and very stressful. By the time I saw my new GP he was horrified that I was on such a high dose. He said I had been on too high a dose for too long and must come down asap. I was told to reduce by 1mg per week which was too quick. So I just ignored him and

    went with my instinct ...and the advice on this wonderful forum. I am now down to 14mg but still in pain in my shoulders/arms. However, a combination of physio and

    Bowen therapy (2 sessions each) plus a change in my gp's attitude (wonders will

    never cease!) has helped me manage the pain much better. I wouldn't reduce any more. I fact I would suggest you go back up to your previous dose for a while, but I am no expert and the ones on this forum have already replied. Have you overdone it lately? Even normal activities like dressing, shopping, etc can set off the pain. I had to literally stop doing anything for 2 weeks (stayed in bed one day) just sat around the house or in the garden on nice days. I hated it! But seems to have worked so far..and a valuable lesson learned the hard way. Don't push yourself and do things that you may not think is much effort. Believe me it is! 

    I wish you well

     

    • pat73046
      pat73046 kay56703

      Posted

      Thank you for your kind words I did drop the dose today but as expected the muscle aches got worse as the day went on. I am afraid I do have a lot to do because I take care if my husband of 45 years who has a form of Parkinson's disease and uses a walker inside and a wheel chair when going to appts. Of course he doesn't drive, I must do all transporting and pushing chair. He can feed himself, bathe ,dress and toilet himself but refuses to even get a glass of water. I have done his meds ( 15 in all) for the last 2.5 years and of course all bills and shopping. We have 5 boys ages 27-44 and they live close by. However I understand 3 Christine Fay's frustration because I don't think anyone understands that this condition causes pain and fatique. I Ned to find a cleaner and maybe home health care because as of this week I have to catch my husband 2 x a day.it only takes 5 minutes but I am getting worn out. I plan to go back up on dose in am and call office on Mon. I really feel for Christine . At least my husband is docile most of the time if unmotivated. Many hugs for all who have replied. Pat
    • Mrs.Mac-Canada
      Mrs.Mac-Canada pat73046

      Posted

      Hi Pat,

      Hopefully having 5 adult boys there is a couple in the midst that you can count on😊.    I think you need to be very honest with your children about you PMR. They need to know about your muscle pain/weakness especially when over used, the fatigue and how caring for their father is so difficult for you because of PMR. Suggest they look up the Spoons Theory.  At their ages they can research it on the Internet I'm sure.  Mine did and it freaked them out at first but once we talked about it they were OK.  It's quite sweet actually because they all (2 sons, 1 daughter)  ask me if I'm tired or sore and take good care of me when I'm with them.  

      Pat, it is better to do this now before it reaches the degree of difficulty that Christine is experiencing and you are totally exhausted and more ill yourself.

      Sadly your husband is not the man he once was but we are not the "wonder Mom's" we once were either.  That needs to be understood by all our family and friends.  

      i hope things get easier for you soon.

      Hugs, Diana🌸

    • snapperblue
      snapperblue kay56703

      Posted

      My favorite comment on moving and having to start up in a new place is from Julia Child’s book on her life in France.  As they tried to settle in in a new sity, her husband said, “No wonder newborn babies cry so much!”

      For me, there is nothing tougher!  I am not surprised the PMR took over.

    • margo25238
      margo25238 kay56703

      Posted

      I am wondering what Bowen therapy is.  Have never heard of it here in NY, USA.  Is it something like physical therapy?

      This stream of information has been very helpful in getting a grasp on the logic of how to wean off Pred.

       

    • EileenH
      EileenH margo25238

      Posted

      I googled "Bowen therapy USA NY" and got several links including one to a directory for the whole of the US. Sometimes it is called Bowtech. One in NY was for someone called Cynthia Rose I think (roseacupuncture).

      To see what Bowen therapy is and how it is done google (Bowen therapy Mitchell Mosher podiatrist videos" and you will find a link to videos on the internet explaining it and demonstrations too.

       

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