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Instant relapse on constant dose; local treatment for pain.

Posted , 10 users are following.

snapperblue
snapperblue

My symptoms started in mid-December.  I went on 15 mg prednisone on Dec 31 but had only very slight improvement, then to 20 mg on Jan 5 (a week ago).  After great improvement for 4 or 5 days (nearly painfree), the sharp pain came back in the arms yesterday (worse today) and hips are starting to hurt again.  Alas!  Any comment?

Also, when the pain is localized (like 2 x 3 inch area of arm), do muscle rubs or icing help reduce the inflamation?

This is a great forum!  Thanks all for sharing your experience and knowledge.

1 like, 24 replies

24 Replies

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  • pat38625
    pat38625 snapperblue

    Posted

    Welcome on board although it would be great if we didn't need it.  I am a newbie like yourself just diagnosed November. Some of the others will be along shortly to answer your queries. It's a great place for support advice and general information so hang on in there.

    Pat

  • tavidu
    tavidu snapperblue

    Posted

    Hi snapper, so sorry that you have had to join our club. I have had PMR since last May and originally I had to keep upping the pred until the pain ceased, this happened to be 25mg. I found that massage and icing did help a little but not enough to keep the dose down. Good luck for the future and hopefully things will settle down for you soon.
    • snapperblue
      snapperblue tavidu

      Posted

      Thanks for the reply and the information.  I was under the impression that 15 mg was "normal" and 20 was quite high at this stage.  I needed the message (in large and friendly letters) saying  "DON'T PANIC!."  
    • tina-uk_cwall
      tina-uk_cwall snapperblue

      Posted

      Hi again snapperblue, yes that's right, 15 to 20 mgs are the normal dosage given but some patients do require a slightly higher dose to begin with to get the inflamation under control. Also dosages of 15/20 mgs can prove too little if say for example you are a large lady or man. Christina 
  • tina-uk_cwall
    tina-uk_cwall snapperblue

    Posted

    Hello snapperblue, I'm so sorry to hear that your journey with PMR has already proved difficult. 

    Pre diagnosis I used a neck / shoulder warmer that I bought from Aldi. I don't think it actually helped with the inflamation because as soon as I removed it or I moved even when it was on the pain was still there, but whilst I was sitting there with it on it was very comforting. I also used a cold spray that I got from tesco. Again that also helped me as it sort of numbed the area albeit temporarily, but once again as soon as I moved the pain was still there. I don't think it's wise to use one of the sprays or creams or gels that contain ibuprofen. I'm not sure why but I think I read somewhere that even external anti inflammatory potions should not be used. Help me anybody - am I right?

    now to your pain and it's lack of response to prednisone. Normally one of the diagnostic tools for PMR is its quick response to preds and if the response to the pain is only slight consultants have often then looked to see if it is some other condition behind the pain and stiffness, however, having said that, although 15 mgs or even 20 mgs is normally more than enough to almost immediately ( within 4 hours- a couple of days) curb the pain and stiffness response to the dose is very individual and perhaps you require a higher dose. But you had such a good response to 20 mgs but that relief was only short lived so you are almost back to square one which must be so disappointing for you. Can you not go back to your dr and see if they'll do a blood test to see if your ESR and CRP levels have raised, although blood tests are not always 100% and May not always show up inflamation although their clearly is increased pain to the patient.

    i am not medically qualified and so cannot offer you any proper advise. Hopefully Eileen will reply soon and as you know we value her advise highly. I hope your pain gets under control soon. Regards christina 

    • snapperblue
      snapperblue tina-uk_cwall

      Posted

      Thank you for your helpful message!  I know my ESR was abnormal, don't know about the CRP.  Thanks to this forum, I stopped taking ibuprofen (which I was taking for an arthritic knee) and melatonin (which I just started taking to cope with insomnia that may be caused by the prednisone).  If they were interfering with the effectiveness of the prednisone, maybe that will help. 

      It seems like icing should reduce inflammation... but my house is so cold, I can't say that sitting around holding multiple ice packs in place is a very attractive prospect!

  • Oregonjohn-UK
    Oregonjohn-UK snapperblue

    Posted

    I started at 25 mg but came down to 15 within a few weeks without any problems - pain ceased about 4/5 hours after starting preds.  It's not an exact science but one true and tested method is not to reduce from 15 mg too quick - in fact it's far better to take it real easy (and less painful!) most sufferers usually have to be on steroids for around 2 years so there is no rush to get to somewhere between 5 - 8 mg (the maintenance dose) at too quick a pace.  Remember the tortoise and the hare - slow but sure!

    There are a number of other non prescription meds that can help, I found that a low dose of magnesium daily stopped my cramps or 'trigger finger' problems.  Calcium with D3 which is normaly prescribed once you start on preds, can also help - but don't take them at the same time as the preds.  Eileen put it this way 'Preds for breakfast, Calcium for lunch'.

    Hope you get sorted and are pain free quickly.

    • snapperblue
      snapperblue Oregonjohn-UK

      Posted

      Thanks for the encouraging note- I am not the only one who needs a higher dose to start with.  Whew!  

      Also thanks for the info about timing of the Ca and D3 versus the prednisone, the kind of thing doctors often miss.

      Until I saw this forum, I assumed I'd be on prednisone a month or two.  Ha! I now see this as a long haul.  Thanks! 

  • EileenH
    EileenH snapperblue

    Posted

    When you started to feel better did you immediately start to try to catch up with everything you haven't been able to do for the last few weeks? That is the usual reason for this sort of problem!

    In PMR the muscles have become intolerant of exercise - they don't register they are doing too much and they then take much longer than normal to recover from the exercise or activity. Just because you are almost pain-free with pred does not mean the actual illness has gone away: PMR is just the name given to the symptoms of an underlying autoimmune disorder that is causing your immune system to attack your body my mistake, thinking it is "foreign". That is still there and the pred is merely combatting the inflammation that results and so leading to pain relief - it cannot and does not modify the real illness. This is purely symptomatic therapy to allow you to manage the illness better. To do that you must do your part by resting and avoiding or modifying the activities that trigger the pain.

    Those who have to work with PMR may need a higher dose to achieve the same level of relief. They must also adapt how they do things to be able to use a lower dose. This may not be for ever - you must, however, allow the pred to deal with all the existing inflammation - and 4 or 5 days is not enough to do that. You have to be patient.

    If after a few weeks at 20mg you still have problems despite resting and not aggravating the problem then maybe the diagnosis should be reconsidered. But on the experience of the last 5 years - you haven't rested enough have you?

    • snapperblue
      snapperblue EileenH

      Posted

       My totem animal is the three-toed sloth so, no, I did not rush around catching up on things!  Luckily, my problem was diaganosed quickly- my GP knew what it was right away- and the pain is not as severe or persistent as many of you experience.  Even at the worst times, by late morning I could walk well and (like all folks with hyperactive dogs) going out is not optional.  Every day, I walk a mile or two while Flicker chases squirrels. Otherwise, I have rested a lot, though insomnia has been a real problem (related to the prednisone?)

      Thanks to your other posts, I understand that the disorder won't be cured by the prednisone, and that the goal is not getting off the drug, but getting to the lowest dose that relieves the symptoms. I will email some of your comments to my doctor.  Thanks to you and the others for letting me know that failure to respond at 15 or 20 mg does not mean that All Is Lost!  Patience!

      I greatly appreciate this forum, especially your comments and clear explanations.  

       

    • tina-uk_cwall
      tina-uk_cwall snapperblue

      Posted

      Hi snappeblue, yes a good nights sleep, what's that! Tonight I'm having a can't sleep night, hence I'm up at 1.43 English time still playing on my iPad.

      yes and dogs are great. My dog is called Katie and she's a border collie rescue, so you can imagine that my life is never dull. Good luck, christina 

    • snapperblue
      snapperblue EileenH

      Posted

      My doctor has me continuing on 20 mg prednisone a day. Since I wake up in the night, I get up, move around, and take the prednisone at around 4 am (following a suggestion on this forum) to jump start the anti-inflammatory response fo rthe mornign.

       The "relapse" seems to have passed. My pain is limited to stabs of mild/moderate pain with  movement first thing in the morning, mostly on the shoulder and upper arm.  It persists as mild pain on movement for a couple of hours, is almost gone by late afternoon. 

      When you say the goal is the lowest dose that relieves symptoms, do you mean that there will be no pain, or is minor pain in the morning close enough? Is it essential to get  rid of ALL the inflammation?

      Thanks for all you do for this forum.

       

    • EileenH
      EileenH snapperblue

      Posted

      If you are up in the night - try taking your pred a bit earlier - the 4am time slot is when the blood level should be high, 2am is the optimum time to take the tablets so they are digested in time.

      No - there can be no promise it means "no pain". Some people are never free of pain, others have very little pain, others have some pain. You have to find a dose that manages it all optimally - as few side effects as possible with acceptable pain/stiffness management. You need a dose that stops the inflammation resurfacing - go too low and it will break through. A slightly higher pred dose is better than trying to manage with a lower dose and other painkillers - which rarely work well and have their own side effects.

       

    • gpgp
      gpgp EileenH

      Posted

      Prednisolone should kick in within an hour of taking it and it can cause insomnia according to the data sheet. The British National Formulary (prescribers bible!) says to take it in the morning after breakfast. We get a natural kick of cortisol (natures own steroid) just before we are waking up. My worry is that taking it at 2 am would result in a lack of sleep which everyone in this forum seems to value
    • EileenH
      EileenH gpgp

      Posted

      If you take ordinary white tablets at 2am, the peak concentration in the blood is achieved at about 4am - so it is unlikely much effect will happen within an hour and it never did for me even when on ordinary pred, took a good 2 hours to notice any effect. 

      I haven't told anyone to do it - I have said that is the most effective way of taking pred to combat morning stiffness. This was proven in a clinical study undertaken in Germany to identify the best time for ordinary pred to be taken to reduce morning stiffness which is the primary reason for taking it. The result was: 2am, The results were the basis of the development of a form of pred (called Lodotra in Europe) which you take at 10pm, within 3 hours of food, and it then releases in one go 4 hours later, achieving the peak pred level in blood just before the cytokines that cause the stiffness are shed in the body at about 4.30am. 

      Everyone is different. Some people develop insomnia, others want to sleep. I know several people who take it at 2am or thereabouts because they wake to go to the toilet anyway. It has worked well for them. I know a few people who take their pred late, just before bed: they had experienced unpleasant side effects an hour or two after taking it in the morning and these are no problem when they are asleep and have got to sleep before the pred enters their bloodstream. Others split their doses 2/3 in the am and 1/3 late afternoon/evening - and achieve a good result. For the majority the single dose in the morning is most effective in every sense, certainly as early in the morning as possible. I have had people complain they feel awful all day until the afternoon - but they didn't take their pred until 10.30am or even later, struggling to get going to eat a meal to take the pred. Early am is good in terms of not getting up in the night - but if you are up anyway what difference does it make?

      And none of this applies for enteric coated pred (if you can get it) because that takes up to 6 to 8 hours to reach a peak in the blood.

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