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Need advice after decreasing prednisone...

Posted , 16 users are following.

roda19095
roda19095

After 7 years of PMR and long time at 5 mg, I have with slow method I learned from your forum, dropped to 2 mg. Am working on decrease to 1 1/2. I am loaded with arthritis so hard to differentiate fro PMR. I have been waking up at 4 am with pretty severe aching in both hips and back, no upper extremities. But after a shower it all works out and am in no pain. It’s been so long since I experienced PMR pain but I don’t remember it going away in the day, plus it was in all extremities. I don’t want to up the dosage if not necessary so I ask for your advice which has in the past been very helpful. Many thanks for any input!

0 likes, 36 replies

36 Replies

  • EileenH
    EileenH roda19095

    Posted

    Honestly don't know - but why not try upping the dose to the last place you were good for a few days and see if that sorts the hip pain in the morning? If it doesn't you can drop straight back to where you are. Certinly, hip pain at that time is a failsafe sigh of a flare for me.

    This is a very low dose - under 5mg has next to no adverse effect. There is not a lot to worry about slowing your reduction to zero.

    • roda19095
      roda19095 EileenH

      Posted

      Okay - you were right! Tried inc to 5 mg last night. No pain in morning. Definitely a flare. Plan to keep it that way for rest of week then try lowering to 4? Then try 3? I had been fine at 3. What do you think regarding drop? Many thx for your input.

      Also want to thank everyone else who responded to my query. Ascalwaysvthis forum goes above and beyond!

    • Michdonn
      Michdonn roda19095

      Posted

      roda, I would and have been reducing by .5 mg using the DSNS method, I think it is much safer and the long run probably will take less Prednisone, with no bad flares. Good luck on your journey, try to stay positive and smile. ☺️
    • BettyE
      BettyE roda19095

      Posted

      Glad the 5 did the trick but  from 5 to 4 is a 20% drop and four to 3 is even higher. I found that at the low doses I got a better outcome reducing by tiny, tiny steps. I used a pill cutter and, at the very end,a say, 0.5 and 0.25 by alternating the dose over two days. I know that might sound ridiculous but, as I've said often before on here ( sorry! ) the hospital pharmacist whom I saw as part of my hip op surgery, told me I absolutely must not stop taking the 1 mg. I was on by then as my body did not need the double shock of the op and stopping the pred. 

      Hope you find a regime that works for you.

    • EileenH
      EileenH roda19095

      Posted

      Can you manage 1/2mg reductions (I mean in terms of cutting the tablets)?

      Really - I can't emphasise the importance of SLOW enough... No rush - more haste, less speed.

    • Roda_4445
      Roda_4445 EileenH

      Posted

      I didn’t mean that I would drop whole mg...I have always done your slow method. Just frustrated to be back at five when my memory was I was doing fine at 3. My question was can I do the drop to 3 at 1/2 mg starting next week with slow method, I just choose 5 because I had been at 5 for over a year It was an arbitrary choice
    • EileenH
      EileenH Roda_4445

      Posted

      OK - but 5mg is  a very low dose, a lot less corticosteroid than your body makes normally anyway and so it is being topped up however much you are taking as pred. I know you are frustrated - everyone feels that way.

      No reason why you can't start a taper again. Just bear in mind that it is possible you flared because the activity of the disease has increased - and that means you might need a bit more pred than you were on before. It isn't worth being in denial - that's all I meant.

  • BettyE
    BettyE roda19095

    Posted

     "I have been waking up at 4 am with pretty severe aching in both hips and back, no upper extremities. But after a shower it all works out and am in no pain. "

    That could be me writing about me!

    I have taken no pred. for more than four and a half years and  have several times asked for ESR and CRP bloods which have always come back normal ( not that that necessarily proves anything, I know. ) My pain is one knee and both feet which doesn't sound very PMR typical so, although I have occasionally though longingly of my pain free days on Pred., I have not asked for a new prescription. Like you, I find my hot morning shower does get me moving and the more I move the better I feel. The problem is that when I sit still for more than half an hour I have to stretch and massage myself back to comfort.

    I heard recently of someone in France on a business trip who was suddenly severely incapacitated by his long standing arthritis and was given steroids by the French doctor he saw. When he related this to his GP in England and asked could he have some more as he felt better than for some time he was disapprovingly refused.  I do not know the dose but, as Eileen says, something around five or lower would probably have no deleterious effects so why are they regarded with such disapproval for OA patients, I wonder?  It was on of the few upsides to having PMR.

    What does your GP say?

    • EileenH
      EileenH BettyE

      Posted

      It is the inbuilt terror of steroids at any dose that most English-speaking doctors seem to have developed! Don't ask me why - non-English-speakers seem less hung up on it. Even when their English is good enough to read all the international work. 

  • amkoffee
    amkoffee roda19095

    Posted

    Is it possible that it is some type of inflammatory arthritis? I've been told by someone who has rheumatoid arthritis that after she gets moving around the pain fades. I understand where Eileen is coming from but instead of increasing you pred you could instead ask your rheumy to treat your arthritis. If that helps then its not PMR. Or yet another way would be to take some pain meds and if the pain reduces it probably isn't PMR. You now have three options to try.

  • pauline36422
    pauline36422 roda19095

    Posted

    i am the same  roda    arround  5 am   i am  awakened with shoulder pain,  but move my arms around, then back to sleep.    then when i get up   around  7.30   still have pain  but after    30 mins of moving around it goes,  thats   before i take my pred.   so i am thinking its just  pain which everyone    says they have  for around  12 months  of coming off pred,   i am  now down to 1.5    so i am   staying on this dose  see what happens,   hopefully it will just   disapear.  may alternate   with 2 mg
    • Twopies
      Twopies pauline36422

      Posted

      Pauline, how do you know you can/should keep reducing it you still have pain?  I’m always afraid that if I reduce, I’m gonna end up in a lot worse situation.  Always hard to judge, isn’t it?
    • Michdonn
      Michdonn Twopies

      Posted

      I am with you Twopies, I never reduce if I have any PMR pain. Do just the opposite increase my dosage. I want to live as normal active pain free life as I can. With a smile. ☺️
    • BillyP
      BillyP Michdonn

      Posted

      I am with Eileen about the 5 Mg bit..........

      ?I am 80 and have been on Pred for about 16 years...

      With a few flares occasionally that require higher doses....some times 25Mg or more , depending...

      ?My main aim is to get down to 5Mg each time and it may take a year or two to achieve that after a big flare......... i cut down one quarter Mg per month on a modified DSNS pattern......

      ( ie,  one half Mg over 60 days ,)

      ?Once i get to 5 Mg i am happy to stay there for the rest of my life...barring more flares of corse...

      ?Maybe i am lucky .. i have few side effects...although i only have to brush against some thing to lose a whole heap of skin, also am covered in bruises etc.. but i have just come to expect that......

      Anyone can let that worry them to death........But i just accept that and carry on..........

      ?All the worrying in the world is not going to change things......In the end you do what works out ok for you....easy to say i know ...i went through the same stages till i settled on what suited me, now i mostly just self medicate unless things get out of hand..........

      I tried MTX and a heap of other things all to no avail.......these days its pred  only, taken of a morning.

      I have been taking Foxamax once weekly ..depending on bone density results......

      ?As i said i may have been lucky side effect wise..... but it is super easy to go off on a tangent if you get the idea you other problems.....like sore hands... you might think you have sore joints when in reality it is the muscles or Vicky Verca....

      ?Sad part about it all, is that most people react differently, so , till you find what suits you, it can definitely be a worrying time     So just roll with the punches   (easy to say isn't it).........

      .

    • BillyP
      BillyP

      Posted

      What i didn't mention was ......i can get from 25mg or more  down to 10 in a matter of a month or so,

      ?Then the long hall from 10Mg to 5 Mg is what i drop at one quarter Mg per month.......

    • pauline36422
      pauline36422 Twopies

      Posted

      very hard  . i just hang onto the theory    that after 6 years it has gone  and the pan  i have   is what i would have at  76,   any way,     just keep my finger s xd.    as the pain dont get any worse. so imagin its old age,    but we will see   also i am in my 4  week of drinking cherry juice so i will  get back on how i am doing with   that xx

       

    • EileenH
      EileenH pauline36422

      Posted

      I've had PMR for 14 years. And no - confirmation today, it has not gone! Yet another flare...

    • ptolemy
      ptolemy EileenH

      Posted

      Oh no, how really annoying. What dose have you had to go to? 
    • Twopies
      Twopies EileenH

      Posted

      Oh no! Worried for you!  A flare and not an increase in pain? Guess by now you know the difference...I’m just hoping for you!
    • Michdonn
      Michdonn EileenH

      Posted

      Sorry EileenH, God knows you know the routine. Hope it is not a bad flare.

      😟

    • BettyE
      BettyE EileenH

      Posted

      You deserve better but unfortunately it doesn't work like that. Hope it eases soon.

    • EileenH
      EileenH ptolemy

      Posted

      Managing fine on 8/9mg - the flares are changing, at least this one and the one just over 2 years ago (or is it 3????). It is most peculiar. Think it might mean there is an element of large vessel vasculitis going on - which I have always suspected and a couple of rheumies have agreed it is likely. I had got to 7mg - and suddenly the atrial fibrillation went mad. At 8mg it was better, at 9mg no sign of anything. Will be an interesting discussion in a couple of weeks.

      No need to feel sorry/worried/concerned for me - it isn't bothering me particularly. Bit tired but nothing too bad. I have a sore right thumb, a few niggles, but even in a flare I'm probably a lot better than a lot of people are normally. I'm used to it after all!!

    • margot34956
      margot34956 EileenH

      Posted

      I feel for you Eileen, you have been such a great support for us.

      I do hope and wish you back to normal soon.

    • ptolemy
      ptolemy EileenH

      Posted

      I seem to have got a flare recently too. At least my GP admitted I might when my CRP went up to 85. He seems very laid back about it. Just a ton more blood tests.
    • EileenH
      EileenH ptolemy

      Posted

      Humph!!!! As long as he doesn't suggest stopping the pills...

    • Elijo
      Elijo BillyP

      Posted

      Hi Billy...I'm like you, I bruise so easily and don't even know most of the time what caused it.  So I just accept it, but do try to be careful.  I was on 5 for quite a while, but have been able to tolerate 2mg. and will soon decrease bya half mg.  I have a feeling my PMR might be gone! (Yes, I'm being very careful to not reduce too quickly).  Good luck with your bruises!  Elinor

    • Michdonn
      Michdonn ptolemy

      Posted

      Ptolemy, think you are having a flare? Did you bump up your dosage? I do as soon as I think I am. If I get relief stay on that dosage a few days. Then drop back to the high dosage in the DSNS taper. Good luck stay positive. ☺️
    • ptolemy
      ptolemy Michdonn

      Posted

      Hi Michdonn, yes I upped dose by 5mg then dropped 2.5mg as it seemed to be going OK. 
    • ptolemy
      ptolemy EileenH

      Posted

      Hi Eileen, he seems quite keen on pills so I should be OK. He was telling me that he had chronic kidney disease, he is Chinese and he was saying that it tends to hit Chinese people more. He reckons everyone over 65 has CKD at a low level and the surgery do not even bother to let people know, presumably as there is nothing they can do about it. It is only if there is a problem.  
    • Michdonn
      Michdonn ptolemy

      Posted

      Good Ptolemy, I am very cautious after last year! ☺️
    • EileenH
      EileenH ptolemy

      Posted

      He's quite right - your eGFR falls as you age, it's quite normal. The experts were furious when it was decided the eGFR results would be stuck onto the reports - they knew that GP practices wouldn't realise that it was a normal part of aging and would tell patients they had kidney disease when they didn't. I have come acrossit quite a lot. The good GPs ignore it - until it is meaningful.

    • ptolemy
      ptolemy EileenH

      Posted

      Presumably when everyone has their notes on line in 2020 they will see they have CKD and there will be another panic! 
    • EileenH
      EileenH ptolemy

      Posted

      Nah - not in 2020. We'll be dead before it all works online...

    • ptolemy
      ptolemy EileenH

      Posted

      I suppose I am being naive in believing what Hunt says! Especially as most things are still manual using a paper and biro.
    • EileenH
      EileenH ptolemy

      Posted

      I wouldn't believe him (or most of his colleagues) saying it was say to cross the road!

    • EileenH
      EileenH

      Posted

      SAFE - oh for editing!!!
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