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Reducing pred quickly - problems

Posted , 7 users are following.

elizabeth40672
elizabeth40672

Hi again. I have reduced from 25mg and am down to 15mg having reduced 1mg a week which I understand is very quick. I now have pains in my neck and shoulders every morning which does get slightly better during the day.  I was wondering If I stick on 15mg for a while am I likely to get any relief. Are the pains likely to go away if I allow the doesage to stay the same for a while or is my body needing me to go on a higher does again and if so what would you suggest. I think I know the answer that I am trying to reduce too quickly but am scared that pred is making my Osteroperosis worse. 

0 likes, 9 replies

9 Replies

  • EileenH
    EileenH elizabeth40672

    Posted

    If you have osteoporosis there are medications to help with that which your doctor should have discussed with you. Then you can continue to take pred if you need it. There is, after all, only a limited choice if you have PMR: pred and be able to move, no pred and be pretty immobile which is an even greater risk factor for osteoporosis. Nefret on here is in that situation, has been on denosumab/Prolia for a couple of years and her bone density is now normal according to scans. She will be on pred for the rest of her life as adrenal insufficiency replacement therapy. It doesn't have to be either/or in this case.

    The speed you have been reducing is possibly leading to steroid withdrawal rheumatism - which is very similar in symptoms to PMR - and you are moving the goal posts for your body before it has adjusted to the last one.  I think sticking at 15mg for a few weeks is a good idea.

    It is all very well reducing at 1mg a week if you have to get off pred altogether but if you are just looking for the lowest dose you will have no idea which dose was the right one for you because you didn't spend long enough at any to know if it still worked. In the early stages of PMR the activity of the underlying disease and so the resulting inflammation symptoms seem to be higher. 

    You need to sit down with your doctors and discuss this properly with them.

    • elizabeth40672
      elizabeth40672 EileenH

      Posted

      Thanks Eileen. I'm due to to see the oestio nurse later this month so I will stay at 15mg until I can have a proper converstion with her. 

      I have got back to the stage that I don't feel like excersising so that is not good. I will be more kind to myself as you alway suggest and see where I go once I have seen the nurse. 

      Thanks again for the advice it is always well recieved smile

  • Nefret
    Nefret elizabeth40672

    Posted

    You do really need a chat with the nurse/doctor, Elizabeth.  You should be able to take the correct amount of Pred without feeling that you are going to fall apart.  By taking too little, you are getting all the downsides and none of the benefits.  Hang in there for a while and see if things get better.

    As Eileen says I am on Pred for life.  And probably osteoporosis meds for life too. Does it worry me?  No, I only remember it when I answer posts like yours.  There may have to be some compromising, but it really doesn't have to be either/or.

    • elizabeth40672
      elizabeth40672 Nefret

      Posted

      Thanks for responding Nefret. I do have an appointment booked so will talk to her when I see her. I was just thinking the same thing myself this morning that if the amount of pred is not letting me do what I want to do then what is the point in taking it. I do realise that I have felt a lot worse than I do today but it is not right. I might as well be on a higher dose and live life properly. 

      The Osteoporosis is a new thing for me along with a possible diagnosis of AS (Axcial Spndyloarathpy? not sure of the spelling) instead of PMR. Ive been told to reduce pred so that they can do another MRI which may give me a proper diagnosis. 

      I don't mind the 'for life' just would like to know I am doing the right thing as far as anyone can. 

    • EileenH
      EileenH elizabeth40672

      Posted

      Ah - the need to diagnose AS adds a complication. That is a very different kettle of fish altogether. It isn't a case of taking enough pred to let you live fairly well - it is a question of reducing the pred to possibly get a far better result because pred isn't the right medication for AS and there is a choice of 5 different versions of anti-TNF drug which does work well in AS. They DON'T work in PMR - so it matters.

      There is a lady on the Healthunlocked forum who was told initially it was PMR that was the problems, with probable GCA later, but that has been revised to AS. She too had to reduce her dose of pred a lot to be able to have the scans that would be able to diagnose the AS. Having diagnosed it and had the tests that have to be done before starting the specific biologic drugs that work well in AS she has been on an anti-TNF drug for a couple of weeks and already is feeling a difference.

      What dose has the rheumy said you need to be down to to do the MRI? I know it sounds horrible but you may have to put up with a few weeks severe discomfort in order to have a better diagnosis and better treatment. To be honest - I do wonder why they didn't suggest you reduced really quickly from 25 to 10mg. It is going to be very uncomfortable until the MRI is done however you do it so the shortest way makes sense. 

      Yes, you need to talk to the rheumy nurse/doctor but I would call them asap rather than waiting for your appointment if it is more than a few days - because the sooner you have reduced, the sooner things can progress. Marking time now is just going to extend the agony.

    • elizabeth40672
      elizabeth40672 EileenH

      Posted

      The dr said to come back at 10mg but the rheumy said he would assess it around 7mg which seems a long way off if it is getting uncomfortable now. I will got back to the doctors. It is good to have someone to ask as I still feel as if I am moaning about nothing a lot of the time. 
  • daniel08939
    daniel08939 elizabeth40672

    Posted

    I have pmr and ostearthritis and for three years I took prenisone and I believe the pred had no affect on the osteo. The osteo did not get better or worse.
  • mary83450
    mary83450 elizabeth40672

    Posted

    sorry Elizabeth i am iover the years. on same boat .i went from 25mg to 8 over 4 years but now i have bad tingling in neck and pain and hands keep going numb. have to have another blood test. will let you know i get on. sorry i cannot help

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