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Pred schedule change

Posted , 7 users are following.

paul45653
paul45653

Diagnosed in May after suffering 5 months. In the US the idea is to get the dose down ASAP. For me it was 60mg 1st day, 20 2nd day, 15 for days 3 to 7. Then 12.5 for 2weeks and finally down to 10.  All reductions caused return of symptoms for mornings or longer. Next schedule is 1mg reduction per month. While still suffering symptoms every morning, it occurred to me that the doctors explanation of taking total dose in the AM to coincide with body's natural production, may not work for all patients. 

I divided my dose(now at 9mg) to AM and PM and have not had any symptoms for a week. I will follow the monthly reductions untill there is a problem at which time I'll go on the UK schedule I have read here. Thanks for the info. 

1 like, 9 replies

9 Replies

  • tavidu
    tavidu paul45653

    Posted

    Thank you Paul for sharing this information with us, It is amazing how doctors (in different countries) treat PMR. Now that I am finally reducing my dose perhaps I should consider splitting it AM and PM. Good luck with staying pain free.
  • Light
    Light paul45653

    Posted

    With any luck, Eileen will share her reducing schedule to prevent the return of symptoms.

    She makes a strong point for a very, very slow reduction indeed. You've been asked to leap before you can crawl, it seems.

  • EileenH
    EileenH paul45653

    Posted

    The idea everywhere is to get the dose down asap - but if you had PMR then a dose of 60 is way over the top anyway according to all the studies done so far. But reductions of the sort you were doing in the early days are likely to cause flares - so going a bit slower actually works out quicker in the long run and means a lower overall dose, which is the aim. Apart from the 60mg and the speed at 15mg you were put on something very similar to the Bristol recommended schedule you would have been at 10mg for the last month or so too and probably wouldn't have had the discomfort at each dose. It is now you are likely to meet the biggest problems.

    The ideal way to take your single dose of pred to avoid morning stiffness is at 2am - established in a study. That gets the peak level in the blood at 4am - just before the cytokines (inflammatory substances) are shed in the body. The pred is there, ready and waiting to target them BEFORE they do their worst and cause inflammation. I know patients who have done that - very successfully. But most people don't want to wake up in the middle of the night so a form of pred has been developed that you can take at 10pm and it releases in one fell swoop at 2am - same efect, no waking at 2am. It is approved for both PMR and RA in the USA.

    • debbie27473
      debbie27473 EileenH

      Posted

      Hi Eileen

      The Pred that you take at night. Is it called anything different or is it a more expensive option? I would really like to try this type. I have a doctor's appointment on Monday so I could ask her about it then. Sorry, one more question! Do you know if, instead of getting the pain early morning, you get it later (say early evening) instead?

      Incidentally, I am wondering why people aren't given these automatically. They sound like a much better option. To get up in the morning with less pain and more energy sounds wonderful. Hope you are well.

      Debbie

    • EileenH
      EileenH debbie27473

      Posted

      There has been quite a bit of debate on another thread in the last week. I take this form - it is called Lodotra. I don't live in the UK though and we are not subject to the same restrictions.

      It is approved for use in Germany, Italy and several other European countries for both PMR and RA. It is now approved in the USA since last year for both. In the UK it is only approved for morning stiffness in RA so isn't used for PMR. There was talk of a trial of it for PMR - it hasn't materialised and has probably been kicked into the long grass. Until that is done it won't be submitted for approval so can't be used by the NHS for PMR. And given the cost I think it is unlikely when they argue about us having enteric coated! (Cost is below)

      I know a lady in the UK who got her doctor to prescribe it on a private prescription and another lady who is to start on it in a few weeks, also private prescription. It probably costs about £100/month, it comes in 5, 2 and 1mg tablets and you combine them to get your dose, meaning up to 3 tablets per day are needed so the cost per month varies depending on your dose. 

      I think they are great - I haven't noticed any return of pain in the evening. I was previously on Medrol which for me had horrid side effects and wasn't actually working: I went straight from 20mg of medrol that gave me a few hours of reasonable pain levels in the afternoon to 15mg of Lodotra that was the typical "PMR and pred miracle".  I've reduced steadily to 4mg since which I'd not managed in 3 years before. Though to be fair - I was on ordianry pred at the beginning and it wasn't a problem other than a bit of stiffness in the morning. So I took my pills when I woke before 7 and they'd worked by the time I got up a couple of hours later. Lots of people do that with good results.

    • debbie27473
      debbie27473 EileenH

      Posted

      Thanks Eileen. I'm afraid I am not in a position to have a private prescription. Still, I will try to take my pred earlier in future as this sounds like the next best thing. The tops of my arms and my hip are awful at the moment when I get up so it makes sense to try it. 

      Are memory probs related to pmr or is it just the stress? I find myself forgetting even really important stuff, like taking my Omeprezole in the evening, so that I don't wake up thinking I'm having a heart attack in the night! I also forget what people have said to me from one hour to the next. It's most frustrating both for me and for them! Am I alone in this? Perhaps it's the pred? 

      Had to laugh the other night. I mentioned my easy bruising to Paul (my partner) and he shot back "Are these b----- tablets doing you any good? All I have heard about are awful side effects!" It made me think and I have tried to remember how I would be without them.

    • EileenH
      EileenH debbie27473

      Posted

      It could either be the PMR or the pred - both mess about with memory. And no, you are by no means alone in it. 

      For forgetting tablets get a dosette box and put it on your pillow - then you can see you haven't taken something during the day. I fill mine every evening before going to bed, the pill packs sit on my bedside table as I don't have to worry about other people getting at them. Doesn't stop me being LATE with things but I take everything I'm menat to in a day!

      We come across so many people who wait until after breakfast - and a late breakfast at that - and whinge about the mornings being awful. Yes, private is expensive and I have no desire to return to the UK for that alone! I have to pay a bit here as a co-pay but it is worth it for the quality and speed of care we receive. 

      Are they doing you any good says he? Maybe he'd like to experience a Debbie WITHOUT pred. Then he'd know ;-)

  • cat_lady_66
    cat_lady_66 paul45653

    Posted

     Hello Paul.   I too had to take 30mg of prednisalone and reduce as you have 1mg per month. It takes a long to to stop taking the meds. When I finally stopped I only did so for a few weeks, and them PMR back with avengence. This has happend to me twice now and I am on a maintainence dose of 5-7mg per day.   I also inject 25mg of Methertrexate per week - yuk - for my Psoriatic Arthritis  and I have done this for years and still have side effect from this drug. I have tried others but have much worse side effects and have had to stop them immediately - it's also difficult as I live on my own. BUT on good days  I do every thing that hasn't been done on bad days! May be not the done thing as we should alway ' do little and often ' but when I am stuck in the house, all jobs are done, fridge full washing and ironing  comple, A nice dress or two in the wardrobe, hair and nails taken care off I can  then read and watch TV with an easy mind, !!!! Good Luck from cat lady 66
  • EileenH
    EileenH paul45653

    Posted

    In case you haven't gathered from the forum already, something I forgot to mention about reducing and catlady has reminded me is that this isn't a relentless reduction to zero. For the moment it is a reduction to find the lowest dose that controls the symptoms. If you reduce too fast, whether that is in too big steps or not allowing long enough between drops, you risk missing that ideal dose and overshooting - which will inevitably cause a flare.

    Men do experience both PMR and pred differently, we know that. What we don't know is why. Either way - the tortoise wins the race!

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