Does it make sence to increase predisilone from 15mgs to 30mg?

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I have just started on 15gms of predisilone per day for severe shoulder, neck and arm pain (both arms). After four days some improvement, but only about 30%. Doctor advised if pain intensifies I should increase to 30mg per day. I feel that increasing to 20mgs might be a better step, to see if there is an improvement at 20mg, as I'm not sure if four days is too short to expect better results. I am also concerned at the idea of doubling the dosage from 15 to 30 in one step. Any advice would be appreciated.

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  • Posted

    Hi there Liam. Did your doctor say what your sed reading is? 

    Just to say that for me, it took about a week for it to really help me at 15mg. On saing that from day one id say it was more like 50% better.

    I know 2 people who had to start with 20mg. If it was me I would try 20mg for a few days first unless your doc had some other reason for starting at 30mg.

  • Posted

    Hi there,

    I was on 15mg of predisone and things were going well until one day the pain went into my upper body like you, whereas before in had only been in my lower extremities. I felt like I was back at square one and in a lot of pain. Every day was a little different as to where the pain was strongest. My neck, shoulders, arms, back...etc, were all affected. I couldn't even sneeze or cough as the muscles wouldn't allow it.

    My doctor suggested we double the dose to 30mg and things improved immensely.

    So far no side effects worth mentioning. I do however split my dose, one half first thing in the morning and the rest mid afternoon. It has been 5 months now and working out quite well. Next week I will start reducing the prednisone very gradually and get down to a much lower dose.

    I hope this helps, and one more point to remember. Everybody is different and I am finding out that what works for some doesn't necessarily work for others. My doctor has been very supportive and suggestive....lucky for me.

    Take care and good luck.

    Shawn 

  • Posted

    hi Liam

    I started on 20mg and experienced a wonderful relief but not 100%, and so my kindly gp put me up to 30mg.

    Since then I've learnt so much from this forum, esp from Eileen and Mrs O (who I'm sure will reply soon smile and I realise that going to 30 prob didn't do me any favours.

    From what I've read most pmr sufferers shouldn't need more than 20mg to bring it  under control, and 70% control of symptoms is anaverage

  • Posted

    sorry, my keyboard went a bit haywire.

    I wanted to add that I'm now in the reducing stage, have managed 30 to 27, to 25, to 22, to 19 all pretty good -now gone to 17 and started to struggle a bit. I do wonder whether having to come down from a higher dose is more difficult.

    I've just seen Shawn's reply and his point that everyone is different is so right. Do read some of the older threads and discussions, there's so much useful info and experience there.

    Glad you've got a supportive doc, me too, although my consultant rheumy wasn't quite so friendly. Im due back to him in 3 weeks time and by his timetable I should be down to 10mg.

    all best wishes to you -very interested to see other replies and opinions.

    Jen

  • Posted

    Hi Liam it sounds a bit drastic to increase to 30, you must be in great pain to have to do so. I was painfree after 4 days on 15 but that was over a year ago..I am slowly reducing from 7 but keep getting little flare ups so adjust accordingly, good luck with your decision .

     

  • Posted

    Hello Liam

    You've had plenty of good advice from the others, and Jenny Sussex is quite right in saying that most pmr sufferers shouldn't need more than 20mg to bring the symptoms of PMR under control, with around 70% improvement being experienced in a few days by most people.

    15mg is the usual starting dose but some patients do find they do better on 20mg - weight can also be a factor in deciding the necessary starting dose.

    As Shawn has said, we are all different and therefore can expect differences in the way we respond to both the illness and the treatment.  So whilst many patients will have a rapid response to 15mg, sometimes within just a couple of days, for others it may take another few days for their symptoms to improve.  It's also worth bearing in mind that only a few lucky people achieve complete resolution of their pain down through the doses.  If you are someone who had high ESR and CRP blood test markers at diagnosis, then, together with your symptoms, you can use repeat tests as a guide as to whether the inflammation is sufficiently under control to try a reduction.

    I suggest giving the 15mg another few days, and then if there is still no further improvement in your pain, try going to 20mg.  If that doesn't improve things, then perhaps the diagnosis should be queried.  Good luck.  

    I feel that 4 days into treatment isn't sufficient time to judge how well the 15mg is working

     

    • Posted

      Many thanks to all for your speedy and very helpful replies and for your support.  My sed reading is 53. I suppose, from looking at other website material, that I was mistakenly expecting / hoping for dramatic results within a few days but I now realise that there are many different degrees of responses to the medication and I need to take a longer term view.  I will perserver for another few days and if I do progress a bit more and the pain remains severe then I will increase from 15gms to 20gms.  I am due back to my GP in 10days timme, and will wait to then before taking the jump to 30gm 
    • Posted

      table 2 Our polymyalgia rheumatica treatment regimen over 104 weeks

      15 mg daily for six weeks, then

      12.5 mg daily for six weeks, then

      10 mg daily for one year, then

      Reduce daily dose by 1 mg/per month thereafter

      Our treatment regimen has a significantly lower rate of relapse at two years (20%; manuscript in preparation) compared to a published cohort44 which used a more rapid dose reduction regime in line with current BSR recommendations6 but had 60% relapse at two years. Our cumulative dose of prednisolone is necessarily higher at 6.2 g vs 3.2 g. However, when dose increases due to relapse are taken into consideration, the dose regimens are more closely aligned at 6.4 g vs 4.2 g.

      so, it looks like your Dr. Is following the correct procedure. If you are having pain in the temples, headaches, jaw pain or very sensitive and painful scalp you shoul discuss this with your doctor.

      as described in an earlier post your SED/ESR and CRP are extremely important blood markers. Everytime I taper I take 5 days to feel better...

       

  • Posted

    The recommended starting dose for PMR is 15 with exceptionally, if that doesn't work well, 20mg. The reasoning behind this is that only PMR responds so typically to this moderate dose. Other things simply don't improve by the "70% within a week" that is almost a confirmation that it IS PMR. At higher doses other things will improve too - but pred may not be the best way to deal with them and knowing this isn't typical PMR prompts further investigations just in case - or referral to a rheumatologist to do that or decide it is PMR, just not typical. 

    Don't expect to be 100% pain and stiffness free - whatever your GP suggested, it doesn't always happen unfortunately. I was at a meeting with rheumatologists recently where they said to us "You mean you don't go back to how you were pre-PMR with the pred?" - NO, we don't, that is a dream...

    Certainly give it a week and then maybe try 20mg, but I really wouldn't go higher. The higher you go, the worse the side effects and the higher the total dose you will have to take overall. And it is often more difficult to reduce from higher doses. When you DO start to reduce - slowly, in tiny steps is the way to go. Some people manage 2.5mg at a time, others struggle with 1mg - and we have reductions plans that do work well it seems so ask when the time comes. But don't be in a hurry yet - you need to be at 15mg for 6 weeks before even thinking of reducing.

    • Posted

      Hi Eileen, I took the sound advice from you and others and stayed on 15mgs but after  5 days the pain was so intense in my shoulder and whole arm that I upped the dose to 20mgs (rather than the 30mgs advised by my  GP). The response to the 20gms was fairly rapid with a 70% improvement within 2 days. I am now on 20gms for 5 day and I am 90%+ improved. (I didn't mention before that I am a coeliac and perhaps I may have absorption problems with the med and that's why the 15 mg dose was not effective?). In any event, I am making good progress, I'm back to my GP tomorrow, God knows what he will advise, I have taken careful note of advise in other posts in this forum about the challenge of reducing.

      Thanks again to all

      Liam

    • Posted

      That really does sound as if it could well be PMR then with a response to 20mg as good as that. Some people do need 20mg - but the idea of statying at that level is that other things would respond to 30mg. What sort of pred are you on? Ordinary white pred is absorbed from the stomach so coeliac shouldn't affect that at all as the gut damage is further down.

      If you've had this response to 20mg your GP should be happy and leave you there for a month or so. Then you can start to reduce but not too fast - i would say preferably in 1mg steps down to 15mg and if that has been fine you could try the slow reduction we have found works where each 1mg drop is spread over a few weeks but you can reduce steadily - you can tell very quickly if you have arrived at the dose you need to control the symptoms.

      Good luck!

    • Posted

      Hi Eileen, I had any interesting discussion with my GP today, which I thought I would update you on, as it shocked me with their lack of knowledge of the arrangements for tapering off pred.  I've spent 4 weeks on 2Omgs and 2 weeks on 17.5mg.  I am due to move down to 15mgs but as I have still some soreness at 17.5mgs in both arms, I asked my GP for a prescription for 1mgs tablet - so that I can go to 16mgs rather than 15mgs. Her response was a firm "can't be done - they don't do 1mg tablets. When I asked her how  would you get down from 5mgs to 4mgs, she had no answer.  I have just now confirmed with my pharmacist that they have the 1mg pred tablets (non coated).  Obviously, my GP is confused as she originally prescribed Deltacortrill tablets (coated prednisolone) and these apparently don’t come in 1mgs. I'm shocked at the thought that my GP was so ill informed and was happy to leave me struggle indefinitely tapering down in 2.5mgs steps, however, at the same time (thankfully) I realised earlier on that this forum is a much more valuable and important source of advice and information for suffers of PMR. 
  • Posted

    hi Liam ,i tried to answer on my mob but just wouldnt work , so my sugestions are pretty late , my old doc told me its ok to go UP the dose but come down  slowly but i think just follow docs orders , but definately come down a mg a week or more at a time , dont jump down too quick , thats where the trouble begins , thats my sugestion anyway , its the immune system that im concerned with , easy to contact other infections at this stage , so get those vitamins in hey , good luck 
  • Posted

    struth i just wrote a whole  post and its all gone , i will try again , i think liam you should follow docs ideas , its ok to increase but come down long and slow , im down to 1/2 mg , and will stay on that for a lot longer , i dont know how long this pmr goes on for , but its the imune system that needs the boost to fight back , anyway thats my idea , good luck ,  well i see now my remark didnt disapear after all lol its at the bottom of the page , lol 
  • Posted

    Hi there  my highest ESR (which I think is sed reading) was 38 at this time I am down to 10 which is good but trying hard to reduce comfortably. Seeing my Rheumy on Tues he will not be pleased as he expected me to be on 4mgs, I am almost entirely on 6 but still taking 7 for two days .

     

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