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PMR, Prednisone, Tapering

Posted , 5 users are following.

kathy67492
kathy67492

I am stuck at 7-1/2m after 27 months...doing the Dead slow method. Does a slower method help...dead slow, 1/2m but spread out further than Eileen or Lodger's plan...or am I fooling myself?...

PMR is running the show...I can't "trick" PMR into accepting less?

My rheumy really has me worried about the internal effects of the prednisone😬

 

0 likes, 23 replies

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  • EileenH
    EileenH kathy67492

    Posted

    Ignore your rheumy - the internal effects of unmanaged PMR aren't too good either! We had a very lively discussion at a meeting recently about the use of corticosteroids - and some of the doctors present seemed to see the light: there is no point in forcing a patient to a lower dose because long term pred MIGHT cause trouble in 10 years time if that then leaves the patient back in pain and with inflammation which WILL cause trouble NOW.

    Below about 8mg the dose is what is called a physiological dose - about the same amount of corticosteroid that your body would be making anyway: it is essential to life. If you are taking 8mg - your body doesn't need to make any more so you are no longer exposed to much of an excess, it is the excess that causes the problems. Most sensible and experienced PMR experts stop worrying at that level. Mine just wants me back to 10mg though he'd prefer 8mg - I was on 5mg and had a flare in January. But no hurry he says - even though I am well into double figures and I've been on pred for 7 years. I'm not falling apart - no more than you do with PMR anyway at least!

    You MIGHT find that 1/2mg over double the time would work (repeating each step) - but you will not get below the amount your body needs to manage the inflammation without a return of symptoms sooner or later. You are NEVER reducing relentlessly to zero, you are looking for the lowest dose that manages the inflammation. But yes - PMR is running the show, and however much a doctor may want you to force the dose lower, if the PMR isn't ready, you won't get lower. Try it and you will have a flare - and that will mean going back to higher dose and cancelling out all the good work getting the dose down before. 

    Add to all this that this physiological dose is the border where your body has to wake up and produce its own cortisol. It takes time for that to get going - so this level often poses a problem. Patience is the only answer. Have a rest where you are for a couple of months and then try again - but just 1/2mg and even slower.

    • kathy67492
      kathy67492 EileenH

      Posted

      Yay Eileen....you don't just talk the talk, you walk the walk!😊...and even after a flare of your own! My whole life I have pretty much just followed doctors' orders, but for this PMR I believe I must follow the forums' advice.

      Through trial and error...and flare!...I know everything you have said is correct. I should be happy to sit tight at 7-1/2m since I feel so good.

      Thank you!

    • EileenH
      EileenH kathy67492

      Posted

      One friend with PMR got off pred altogether and then relapsed a few months later. Her lovely rheumy put her straight back onto 10mg - because she was about to go on a special holiday that had been postponed because of PMR. She has reduced now to 7.5mg - and says she doesn't feel any pressure to reduce - BECAUSE SHE FEELS SO WELL. 

      There comes a point where you do stop panicking so much about reducing the pred dose - because there are some things that are important. But it takes some time getting there I suspect. Rheumies have never had PMR - they really have no idea what it is like!

    • donna60512
      donna60512 EileenH

      Posted

      Yes, I think that quality of life is much more important.  At my age, I want to enjoy life and not be worried about what might happen.  I picked up my prescriptions, but as I said I will not begin the Methotrexate until after my week at the beach with my daughters.  I am usually a pretty upbeat person, so do not want negativity and worry to take that away.  My main concern with writing and joining this group was my vision.  I am finding that as long as I am in natural lighting, things are pretty clear.  Artificial lighting causes a fog to encompass everything.  I probably should join a retinitis pigemntosa group.  I have avoided that for a long time, head in the sand sort ot thing.  LOL  Thanks for your input.  
  • donna60512
    donna60512 kathy67492

    Posted

    I am just at the beginning of my journey.  I began this therapy about a month ago.  My rheumatogogist has already said that he doesn't want me on the prednisone for too long.  I cannot imagine living with that horrible pain, so can't imagine what will happen.  I sure hope that you are able to get off of it soon.  
    • EileenH
      EileenH donna60512

      Posted

      "I don't want you on pred for too long" - fair enough. But what is he offering instead? There is no other drug that reliably manages PMR - he must know that so what is he suggesting? That you stop and go back to where you were to start with? Has he ever had PMR himself?

      I really am beginning to wonder if they have any idea at all what we go through without pred. I had PMR for 5 years with no pred - if you told me I was risking my life staying on pred for as long as I have now I'd say fine, it's a risk I have to accept. Intense pain for short times is horrible but you can tolerate it. When there is middle-level pain that never goes away, even low grade pain that occupies every waking hour it is a very different matter. And then add to it the disability and dependence on others. To condemn patients to a life of misery - because that is all it is for some people without pred - just because some people may have side effects later is unrealistic.

      Other illnesses require long term pred at a similar level but they don't seem to have a similar attitdue there. PMR is definitely underestimated by the doctors - and their belief that it "burns out" in a couple of years is what informs their attitudes I suspect. If only it were true - but the standard German rheumatology textbook quotes an average duration of 5 years, sometimes longer. Why do the English-speaking doctors have such a problem and such an expectation? 

       

    • donna60512
      donna60512 EileenH

      Posted

      OH, Eileen, I so agree with you.  The pain of PMR is indescribable.  At one point when I was trying to get the doctor to change my dose, I told the nurse that the pain was at a ten plus, but quality of life was less than zero.  No, they do not understand.  They see it all the time, so not sure why they dont' get it.  I was getting to where I absolutely hated even going to bed at night knowing that I would have such a struggle getting up and getting dressed in the morning.  My doctor said that a year would be his guess.  Are you on any other med for the PMR????  Take care.
    • EileenH
      EileenH donna60512

      Posted

      No - just pred for PMR. There is nothing else that works. Taking just pred and needing no other pain or depression medication is better anyway - pain meds don't touch PMR pain. And pred is safer than the narcotic pain relief which most US doctors seem quite happy to hand out. It's less of a problem so far in the UK but it is growing.

      " My doctor said that a year would be his guess" - well he should know better and if he tries to force you off pred I'd suggest you look for one who has a better understanding of PMR. 

      It is a chronic illness, it MAY burn out in something between 2 and 5 years, but there is no guarantee and it is as painful as rheumatoid arthritis but without the joint damage. Ask him if he would tell an RA patient they should stop their DMARD? Pred is our DMARD. 

    • donna60512
      donna60512 EileenH

      Posted

      My doctor's plan is for me to go on the Methotrexolate and be weaned off the prednisone.  I am picking the Methotrexolate today, but will not start it for ten days as I am going on vacation and do not want to worry about side effects while I am gone.  He said that a possible side effect of the new med is hair loss, not looking forward to that.  I am ot sure that I have speleed it correctly as I do not have the prescription here in front of me yet.  He suggested that I take Tylenol.  I was taking Ibuprofen and he was concerned about that.  I will NOT take a stronger pain med no matte what.  You are right, doctor's in the U.S. do give those out to readily and I do not want anythign that strong.  I do hope that you feel better.  I am actually feeling pretty well right now, but then I am taking 20mg of Prednisone a day, so I guess I would be feeling better.  Take care, Eileen.
    • EileenH
      EileenH donna60512

      Posted

      The methotrexate may help you manage with a lower dose of pred - but it does not replace the pred, for some people it makes the pred work better - but by no means everyone and it has its own side effects. If you suffer the side effects don't let him bully you into carrying on. There are a couple of people on the forum on methotrexate but neither of them have been able to stop the pred altogether.

      Tylenol is useless - there have been studies recently that show it is no better than placebo for back pain and puts you at increased risk of renal and cardiac problems - so why would it work in PMR? It is not an anti-inflammatory - ibuprofen is and it has very little effect in PMR as well as being very risky. One lady with PMR was told by her GP to take ibuprofen and she ended up in the ER with a stomach bleed after 3 doses.

      However - you will probably have to humour him for now.

    • donna60512
      donna60512 EileenH

      Posted

      The doctor did not want me on the Ibuprofen because of stomach possilbe stomach problems.  I am taking the Tylenol Arthritis type.  I only take it two times a day.  I am not finding it to be too helpful.  The doctor is also very insistent that I take Pepcid to protect my stomach.  Thanks for the information.  I will not let the doctor bully me into totally getting off the prednisone if it helps.  All of this is so new to me.  I have always been very active walking 10,000 steps a day and eating very heathy.  My weight is very normal, maybe a little low for my height, so this is just so odd to me, do everything right and still end up with something like this.  Oh, the doctor has recommended physical therapy.  What do you think?  I don't plan to start that until after my vacation either.
    • EileenH
      EileenH donna60512

      Posted

      Only if the pysical therapist is experienced in PMR (that means really does know what it is and why you are on pred). Layne will wax lyrical on physios who don't know what theya re doing. Your muscles are intolerant of acute exercise and the sort of things many physios do are not suitable for PMR - they tend to be repeated or sustained actions that are poison in PMR and may well leave you feeling worse than before. Gentle hydrotherapy is ideal initially. And possibly gentle stretching-type exercises. But not normal physical therapy.

      The more I hear the more I think you need another doctor.

    • faye______00403
      faye______00403 EileenH

      Posted

      My printer is broken.   I wish I could print all this info and take

      to my Primary.....he took the Bristol Report I took to him and

      said he would read it.  I just think they have no idea what

      is going on with PMR.   My docs aunt had PMR and she

      "got off" the pred so guess he thinks everyone should.  He is

      agreeable to letting me control my dosage  .I'm 79 yo and

       have been on pred for 3 years and pretty sure I'll take some amount the rest of my life....

    • Anhaga
      Anhaga donna60512

      Posted

      Good advice from Eileen about the physiotherapist.  I asked my physiotherapist how she knew so much about PMR and she said she has a good friend who is a rheumatologist, apparently one who understands the disease, so runs queries past her when treating people like me.  smile  

      They should evaluate your range of motion and your strength.  You should not be given repetitive exercises, or ones that are supposed to gradually increase in number and stress on the body.  What you want are exercises that will help strengthen your core, plus maintain and even gently improve your range of motion.  There may be other treatments offered, like "dry needling" which releases tension in muscles. I think the consensus is that traditional acupuncture doesn't have much if any effect on PMR.

    • donna60512
      donna60512 Anhaga

      Posted

      Thahks, I am going to make sure that I get a full assessment before beginning any PT.  I told the doctor I was hesitant and really wanted to know things that I could do at home.  Also, due to my vision, I am very limited on where I can drive.  I do not want to be dependent upon people for transportation.  Sadly where I live we have very poor public transporation.  I appreciate your comments, Anhaga
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