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lbh

To EileenH please

I wonder what constitutes a 'flare' and how symptom free one should be? I was recently diagnosed with PMR, responded very well indeed to my initial dose (15mg for 4 weeks). My GP then put the dose down to 10mg which I thought was a big jump considering the NICE guidelines recommend 12.5mg. However, I went along with it. I have noticed that I am now much stiffer in my shoulders and upper arms in the mornings (hips lesser so) but that this gradually improves over the day until I am virtually symptom free from early afternoon onwards. I asked the clinical pharmacist at the GP surgery if I could split the dose but he didn't recommend it. Since then I have read a clinical paper which reinforces that advice. My question is whether I am expecting too much by way of symptom relief or whether I should go back to my GP and ask for 12.5mg. I am not in pain, it is discomfort. It is not stopping me from doing anything I want to but if I go to Pilates in the morning my ability to move is much impaired in the mornings compared to evenings when I wouldn't really even know I had PMR.

16 Replies

  • lbh

    A flare is the return of symptoms of the PMR - and it doesn't matter whether it is due to reducing too far or an increase in the activity of the underlying disorder because it is due to the current dose of pred being too little to manage the current level of inflammation.

    Yes, that paper says taking pred all in one dose in the morning means there is less suppression of the adrenal gland production of cortisol in the morning. So theoretically that is how your pred should be taken. And it probably is relevant for patients on a short course of pred, maybe up to 4 weeks or so which is often done in chest infections, asthma and so on. When you stop the pred - the adrenals are better able to take up the task again.

    However, we are on high enough doses for long enough for adrenal suppression to occur anyway - after a few months at above 10mg and less at higher doses, and we will be above 7.5mg (the physiological dose) for potentially many months, often years. In that case it makes far more sense to use the pred to give the best result at the lowest possible dose. In a lot of people the anti-inflammatory effect lasts well under 24 hours - with a return of symptoms during the day. Then it makes a big difference to split the dose so the same amount gives a good result over 24 hours. By taking the bulk (2/3 or so) in the morning you are still only taking perhaps 5mg later in the day and there is STILL minimal suppression of adrenal function but a better symptom-relief effect. Ignor the pharmacist in this case!

    Whatever your relief at the starting dose is your guideline and you should remain at that sort of level of PMR symptom relief. It is possible other things may niggle at lower doses - you do have to learn the difference. How long is it since you took that enormous drop in PMR terms (it is a normal reduction pattern for other uses of pred, but definitely not advisable in PMR)? Is it improving slowly? Even when the returning pain is due to steroid withdrawal it should improve over the following 2-3 weeks. If it is getting worse, then it is because the new lower dose simply isn't enough - YET. Top experts would take 3 months at least to get from 15 to 10mg - which is a lot longer for the disease activity to start to fade and allow the reduction.

    How early do you take the pred? The optimum time is 2am to minimise morning stiffness (established in a study in Germany): the inflammatory substances are shed in the body about 4.30am and that gives time for the pred to achieve peak levels in the body beforehand and no inflammation gets hold. The sooner after 4am you take the pred, the less inflammation it has to deal with and the better the effect. A lot of people wake early, take their pred and settle down for another couple of hours to let it work.

    Even without pred at all (not diagnosed) I did an aquafit class BEFORE Pilates or yoga - and could move enough to do the Pilates fine, albeit with a few adaptations for my limitations. By the end of the class I could move normally. Shame it would be mega-expensive and very time consuming to do that now...

    • EileenH

      Thank you Eileen for your comprehensive answer. It was indeed the information about suppression of the adrenal gland that I was looking at and am reassured by your answer.

      To answer your questions, I have been on 10mg for 3 weeks now (starting dose of 15mg for 4 weeks prior to that) which I was beginning to think was long enough to come to the conclusion that it wasn't doing the job, and yes, it was gradually getting worse.

      Your other question was about when I take my med. I take them with my breakfast which is 7am on a work day (only 2 days) and anywhere between 7am and 9am on other days. I struggled a little with disturbed sleep when on 15 g (seems much better on 10mg) so I would be a little worried about purposefully waking mid sleep in case I couldn't get back to sleep. Likewise, at the back of my mind I wondered whether splitting my dose might also disturb my sleep.

      To update my post, I decided yesterday that the clinical pharmacist knew very little so I spoke to him again and more or less insisted that my dose is upped so I'm starting 12.5 (one morning dose) as from today. I'll give this a go for a few weeks but if I'm still struggling at that point I will try splitting the dose.

      It was interesting, your comment about your exercise, I'm finding that I'm worse (stiffness) when I don't get the chance to exercise (usually work days) than when I do. Going for a nice long bike ride today 😆

      Thanks again 😊

  • lbh

    Hi lbh, I split my doses, 1/4 or so at bedtime. I use The DSNS taper method, try never to reduce by more than 10%, currently on 7 tapering to 6.5 mg. In the race to get off Pred, it is like the race between the tortoise and the Hare, first time tapering from 20 mg following my doctor's advise I was the Hare, this time I am the tortoise, pain free for about a year. Thinking positive and smiling. ☺️

  • lbh

    I have almost exactly the same questions that you have. And although I truly appreciate Eileen's expertise and knowledge of PMR, I fail to understand her response. 

    Like you, I had immediate and total relief from symptoms on my initial dose. I have never had such complete relief since. Again like you I now have stiffness early but can tolerate it. Also, there is no pain so long as there is no stressing of my back. I read Eileen to say that we should have no more symptoms than when we first began. 

    I would be very much interested in what others think about your questions and her answers, and also their own experience.

    • philoso4

      Sorry - I don't understand your response either.

      "I read Eileen to say that we should have no more symptoms than when we first began. "

      That isn't quite what I said. The relief you get with the first level is your guide - and with regard to the PMR you should be aiming for that as you reduce. There are other things that may crop up that pred doesn't help. By no means everyone achieves total freedom from pain at any level - you have been exceptionally lucky if you did.

    • EileenH

      Thanks, Eileen for your patience. Allow me to compare my current condition with my condition after I first began to take Medrol. I began on 20mg (if I recall correctly, but it was near that). I had total, complete, almost miraculous relief of all symptoms. Rather than having to summon every ounce of strength and patience to spend the 10 minutes or so of excruciating pain upon getting out of bed I was able to pop up with no pain whatsoever. I could bend and lift heavy packages without the pain previously associated with that kind of activity. That kind of complete relief was amazing. I am now on 6mg. I am quite stiff on arising and experience pain on straining against that stiffness. The pain is not nearly so much as it was before Medrol, but quite uncomfortable. Stiffness decreases over the day but does not disappear. Riding after sitting for a length of time is difficult and painful.

      Now, should I increase dosage to the point that all stiffness and pain are relieved (as my condition was on the initial 20mg) or should I tolerate such as I am now experiencing?

    • philoso4

      In my opinion I would say you have reduced too far - those are typical PMR symptoms and showing the daily dose of inflammation is slightly too much for the dose you are taking so it is building up again. Just taking a dose of steroid isn't enough - it has to be enough to manage the symptoms. And what you are taking isn't. You aren't heading relentlessly to zero, you are looking for the dose that gives the same level of symptom relief that original dose did - although you do have to remember that that initial miracle may be gilded a bit in your memory as a comparison with what you had had before!

      What WAS the last dose where you had no pain and stiffness?

    • EileenH

      Bit by bit. But they aren't aches. They're stiffness which results in pain when stressed. Example: I feel stiff when I go early in the morning for my newspaper. A mild hurting when I reach down to get a packet of papers which may weigh as much as 25 pounds. When I get a grip on the bundle and lift it, there is much more pain.

    • philoso4

      I used the word aches as a general term - put it down to ciltural use of language if you like.

      They are very likely signs and symptoms of PMR being just slightly undermanaged. If they had reappeared at (say) 8mg I would have said the same thing - and the fact you imply that they are increasing rather than being stable reinforces my thoughts. The underlying cause of the PMR appears to still be active - and we talk all the time about pacing and so on. If you overuse your muscles they will protest - the ongoing autoimmune disorder makes your muscles unable to respond as they used to to being used acutely and then they take longer to recover. If in the recovery period you stress them again - they will probably hurt more and take even longer to recover.

      But you also do have to remember that anno domini does not stand still. I think I am a fair bit younger than you - OK, I'm female, but you wouldn't find me wrestling with a 12kg package of anything!

    • EileenH

      Thanks for your response Eileen, albeit that the thanks are late in coming. I've been diverted for a while.

      The clarification is appreciated. I think we probably understand one another better.

      I have tried some ceebeedee oil and it definitely helps. It should be much easier to stay at 6mg medrol. I don't yet know whether the cost will be justified.

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