Helpful guideline from my Rheumy

For those of us who have tapered down to the single digits, the point at which our adrenal glands have to start functioning again, we can find ourselves quite uncertain as to whether we are having a flare or just suffering from "prednisone withdrawal" (which is actually adrenal insufficiency in my opinon). I received some helpful guidance from my Rheumy yesterday.

I have PMR/GCA diagnosed 4-1/2 years ago, and had 3 relapses over that time. I had reduced from 4.5 mg. prednisone to 4.25 mg. two weeks prior to my blood test yesterday for inflammatory markers.  The first 2 days after reducing seemed fine and for the next 5 days I was very tired and had constant mild headache which gradually subsided by that 5th day.  Then for the remaining week I was increasingly normal and more energetic.

My Rheumy said, "That is exactly what I would expect when reducing prednisone at that low level. If it had been active disease beginning to flare you would have just kept feeling increasingly worse."  My blood inflammatory markers seemed to confirm this as they were low and exactly the same as the month before.

Each of us has to decide how bad we are feeling and when to call the doctor, but I found this to be a useful guideline. Basically (at low doses) if it hits you about 2 days after reducing and lasts about 5 days while slightly improving over those 5 days, then it seems more likely to be "pred withdrawal" than a flare.  I appreciate having that guideline. I hope it helps some others in evaluating their own situation.

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  • Pred withdrawal seems to happen pretty soon after reducing the pred, that is why the slow approach is a good idea. I find PMR problems due to the reduced pred happens a week or two after the reduction, again the slow reduction method can get over this. I must admit my inflammatory markers are very up and down and often have no link to how I feel, they can be quite high and I feel fine and vice versa. I have never had to actually call my doctor in the two years with PMR, she sometimes phones if my blood markers have a glitch. I have regular blood tests. I last actually had an appointment to see my doctor in October 2014. 

  • Hello cdenoncourt.  Thank you for your very insightful input into this forum.

    Just a quick reply to say that I agree with you totally about the dichotomy around PMR symptoms and the perceived (?) effects of reducing the medication to manage them, in combination.

    I can well-relate to your experience.  I am currently 'down' to a very gently tapering approx 6 mg pd from an initial 30 mg pd 12 months ago, and have the same 'withdrawal' symptoms.  My most recent blood tests are stable and, fortunately, there is no indication of GCA in my case - so far.  

    Like you, as I incrementally and carefully reduce the pred dosage at lower levels, there seems to be a lag / catch-up period between even a gradual, smooth reduction in the preds and an elevating of physical symptoms (pain, stiffness, fatigue etc) despite this: and even allowing for moderate exercise etc.

    I'm sure this is the confusing bit both physiologically and psychologically for many of us.  In other words, is the recurrence of / increase in symptoms / (sic) 'flare-ups' at lower levels of pred dosage more due to the supposedly unpredictable course of the PMR, or the fact that we might be pushing the limits of an often, even if reliably 'advised' rate of pred reduction in terms of our physiological and psychological resources to cope with the withdrawal symptoms of such: or both at once?  Mmm.. no wonder many of us are confused about the causes and effects.

    Ok, and for what it's worth: this forum is a great and valuable source of expert advice, sharing of experiences, and support for PMR / GCA sufferers.  I, for one, have benefited greatly from joining it: and I defer to the wisdom and expertise of many who engage in and contribute to it personally or professionally. Thank you, all.   

    All I would add is that we should (as sufferers or medical experts) be talking more about what seems to be a perennial dilemma for many of us in either context.  By this, I mean in discussing and hopefully determining better how to manage the simultaneous processes of coping physically and psychologically with the course of PMR: and, at the same time, better-exploring the invariably conflicting process of how best to reduce our physical and psychological dependency on / the withdrawal symptoms around reducing the dosage of very powerful drugs that manage the symptoms of it: but with equally powerful side-effects.  

    The ultimate Catch-22 for all of us who have an interest in the treatment of PMR: but, for some, a conflict of interests perhaps..?

  • Interested to know what you mean by conflict of interests?

  • Sorry, perhaps not very well articulated on my part..  What I was getting at is the seeming dilemma / conflict of interests for many (especially newly diagnosed and / or new to this forum) PMR sufferers who are trying to get their heads around the concept of how to safely balance the simultaneous processes of both the management of PMR and steroid reduction withdrawal / associated symptoms (which, as you say, are hard to differentiate from each other).  Your other post today explains the dynamics of this very well - thanks.  It's just a pity that your expertise doesn't seem to be more easily accessible to many here - I remember you saying how often you find yourself re-posting your previous posts in response to the same questions from others on the forum.         

  • I have had GCA for the past two years.  I found your entry very reassuring as I reduced (on a rheumy's advice) from 6mg pred to 5mg 10 days ago and have since been suffering from extreme fatigue, muscle weakness and pain in the hips, thighs and knees.  I didn't know what was happening as I seemed to have gone back to how I was feeling months ago. My markers have been normal now for some time.  After reading your entry, I guess I must stick it out in the interests of kicking my adrenal glands back into action.  Thank you.

  • Personally I think 10 days is more than enough time to have tested the waters and I'd have increased my dose slightly by now.  Are you using the dead slow method?  That helps the body adjust over several weeks to new dose. 

  • I religiously follow what my rheumy advises.  I was on 6mg for 3 months before being told to reduce to 5mg.  He said that when I next see him in 4 months time the very slow reduction will begin & it will be a year, if all goes well, before I am off pred altogether.

  • He sounds reasonable but do have a look at the dead slow method.  It will get you down by one mg per month in a more gentle way.  And as you imply you'll be at 5 for several months anyway why not slide rather than step down?  Your adrenal glands will have a few gentle taps to get going and you will probably feel quite a bit better.  If you don't want to do anything without checking with him do take in a copy of the method.  My doctor was most interested and encouraged me to give it a try. 

  • Thank you.  I will ask my GP this week but don't have a rheumy appointment until August.

    How do I get a copy of the method?

    Thank you again for your kindness in answering so fully.

  • I'm using a temperamental PlayBook and can't get the link for you but I'm pretty sure if you Google healthunlocked dead slow nearly stop you will find it.

  • Yes, thank you for this post, which is helpful. I am currently down to 7.5mg, and reckon I have had similar experiences when dropping by a half mg. I just have to be patient, and allow things to settle down, sometimes over a period of 4 weeks or more, before contemplating any further reduction.

    Good luck

  • On the PMRGCAUK Northeast support site/groups/forum/our patient info we have been saying for the last 6 or 7 years that steroid withdrawal pain will generally start immediately you change the dose - as soon as the body realises there is less pred - and then improve over the following days, sometimes even longer. 

    A flare, on the other hand, will usually take a bit longer to manifest and will then get worse as time goes on. This assumes that you are well above the borderline of what you are seeking: the lowest dose of pred that manages the daily amount of new inflammatory substances. If you are very near that and are trying to reduce in big steps then you can easily overshoot - and then there can be some discomfort immediately because the new amount is not enough to deal with this morning's dollop. It will be worse the next day and so on.

    This is the basis for the slow reduction regimens that we have spoken about - the smaller the change in dose the less likely it is you will suffer steroid withdrawal problems and the more likely it will be that any returning pain is a flare. It has the added benefit of identifying that "right dose" much more accurately - you edge up to the point without shooting past and letting in a flare that can be quite difficult to get under control.  You might be fine at 7.5mg and try dropping 2.5mg to 5mg and you are then well below what was going to be the "right" dose of 7mg. You immediately have returning pain. However, because the drop was so big you get the pain quickly and you can't tell which it is. 

    The concept of dropping just one day at a time to the new dose also helps - I notice I feel "different" on the "new" dose day for the first 3 or 4 times. Feeling better the next day on the "old" dose confirms it was steroid withdrawal. After a few times my body seems to realise it's fine, stop panicking! Once that feeling stops I feel far more confident in finishing off the reduction regimen. 

    And I nearly forgot - going so slowly below 8mg also gives the adrenal glands a chance to wake up as I've posted on various threads recently. One particularly good rheumy likes to keep patients at 5mg for some months to allow that too. In terms of adrenal function not being up to snuff, the most common problem there is increasing fatigue, and fatigue that makes the PMR fatigue look a real beginner! If that starts to happen then don't reduce any further - there is no real need to go back up as long as you have been reducing very slowly with good spaces between each very small drop in dose, and you can wait to see if the fatigue improves as the adrenal glands start to kick in. This is the same as chronic adrenal insufficiency.

    However, if it doesn't start to improve OR if for any reason you are subject to stress of some sort, whether it is emotional or physical in the form of illness or injury, you may have to take a bit more pred. In stress your body should produce a boost of cortisol to help the body cope - if that isn't there then you can become seriously ill due to an acute adrenal crisis. If you are taken ill with any of those symptoms (and it can happen without such a stressor) then you need to take some pred or call 999 (better than calling your GP)  because you can become confused and collapse. the paramedics carry injections for this purpose. This is the reason you should carry a steroid card or wear a MedicAlert tag in case you were to be taken ill and unable to explain your medical history to healthcare professionals.

  • Yes all, I think developing patience is key to coping with the ups and downs and unpredictability of the entire process, even with the 'best' of tapering regimens.  Surely, impatience / frustration and the associated emotional / physiological strain can only exacerbate PMR symptoms, not to mention the likelihood (for some of us..) of also overdoing it along the way?   I read somewhere that, with auto-immune illnesses like PMR, we should be prepared to operate at 50% of our previous physical and mental 'load' since the immune system's 'battery' is now running very low.  Easier said than done when we are  used to going at full speed?! 

    This also begs the question that many have asked here: were Stress  and Strain (or our relative ability to recognise the signs and manage them) a contributory factor to the development of PMR in the first place?   This could be due either to our inherent personality type (e.g. 'driven' / 'achiever'), external stressful events, a genetically inherited 'weak' immune system, or a conspiracy of all of these.  Many here have said that, on reflection, the onset of PMR followed a stressful period in life, whether for a few months or many years, but they didn't see (or simply ignored?) the warning signs.  This was my experiential learning - 'could do better'. Mmm :-/

    Of course, Stress is a very complex and subjective phenomenon, and it is well-known that some degree of 'load' can be a positive motivator for many of us (i.e. rising to life's challenges and achieving things for ourselves and others).   But, psychologically, if we are in the (lifelong?) habit of pushing our physical and emotional limits, what we might have seen as a 'healthy' sense of denial of the insidious effects of Stress can slowly creep up on us.   Although a condition like PMR / GCA seems to hit us like an express train from out of the blue (in terms of its apparent suddenness), is it more realistic to say that we failed to hear or ignored the sound of that powerful locomotive advancing on us when it was in the far distance..? 

    Again, this was my experience: and in hindsight, I had been pushing myself too hard physically and emotionally for some time before I 'got' PMR (or should I say PMR 'got' me'?!).

    Either way, developing Patience seems to be the emotional 'work' that many of us need to do on the precarious journey of PMR (let alone GCA), and all that goes with these life changing illnesses - whether temporary or permanent.  Expert research shows that a reliable, smooth and personalised steroid tapering regimen (in context) plays a big part in managing the worst of the physical symptoms of PMR.

    Learning to 'roll with' (i.e. accept, not fight) the ups and downs of flares / withdrawal symptoms day by day is the harder bit for some of us: and maybe the important emotional work that will help us not only to cope better with the condition physiologically, but also to reflect on how we might (I stress, might) have made ourselves susceptible to it in the first place?   Sometimes, the answers to the present can be found in the past...   

    Happy days.. :-)       

        

  • Thank you for that information! I also felt tired and lethargic up to 3 days after lowering the pred from 6.5 to 6.0. Then I felt fine. I'm now on 5.5 and besides  a stiff neck (which seems to be getting better after a week, so no relation), I'm feeling pretty good! I hope it continues!

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