My question of the day is - how am I supposed to know when to go up or down on the pred? And I have come to the conclusion that I really don't know what level of "discomfort" I should expect to be living with.
I would like desperately to lower the dosage. Over the past 3 months I have gone from 12.5 back 15, to 13, now at 12, and I know I'm feeling worse. It's not altogether intolerable, as it was pre-diagnosis, but I feel like I have flu-like body aches all the time.
I guess everyone handles this differently, but wanted to hear about your experiences. Should I "grin and bear it" and slog along? Raise my dosage until I feel better?
I hope these questions generate some lively discussion.
Thanks always for your continued advice and support.
Kiko
Written by
SapoKiko
To view profiles and participate in discussions please or .
"My question of the day is - how am I supposed to know when to go up or down on the pred? And I have come to the conclusion that I really don't know what level of "discomfort" I should expect to be living with".
No-one can help you on that score as we are all different humans and have different tolerance levels and can also have a different lifestyle and other illnesses.
Take a look in the FAQ's ar PMRpro's or Dorset Ladies tapering plan and try one.
Go back to where you last felt comfortable looks to me like 15mg and I know the plans say from 10mg downwards, but just adapt from 15mg downwards. Slow but sure and steady is the way to go.
Please try one of the plans. I know they say start at 10 mg but just adapt they do work for many people.
Thank you jinasc, I have been leaning towards going up, maybe even try 1mg (from 12 back to 13). It really seems like a guessing game, much trial and error. But sticking to a slow taper is probably what I need. B-)
How were you back on 15mg? Honest answer required! Really good? Or just okay?
How long long did you stay at that dose, and I’m guessing you’ve reduced -1mg a month..or thereabouts… Did you feel really okay at each dose before you reduced?
Hoping the answers are good, 1 month at 15mg and felt okay each time - but have a feeling they may not be!
Apologies if I’m wrong…
Are you treating yourself as a person with a serious illness, or just trying to grin snd bear it and live life as normal.
And please have another read of the link on information for new patients I sent in reply to your first post
Just another point, are you sure the flu like symptoms are your PMR , and not related to something else.
Hello DL! I think I was feeling 'okay' at 15mg, much more okay than now, anyway. I don't think I have felt 'really good' since pre-diagnosis.
I was at 15mg for couple months, and since January have been trying to reduce, but perhaps I am too impatient. Yoyoing is likely not the best solution!
So my choices are go back straight to 15, which seems like 'starting all over again', or see if 13mg does a marked improvement.
And... have the discipline to follow the slow taper. Cheers!
Maybe original dose was not enough -15mg is not for everyone….but I think the sensible, if not the ideal solution would be back to 15mg -and start again…
But do just be aware of the flu type feelings -if they don’t go with extra Pred -could be a dreaded C symptom- hope not.
You should feel as well in general as you did when you first took the steroids. You may find after reducing you may have a reaction for a couple if days or so, but overall if things get worse it means you have reduced too far. I should go back to the point you felt OK.
I usually say that the level of relief you got with the starting dose is your guide and you should never feel worse after a reduction step than you did at the start of it. However - if you weren't given enough to get get a good response at the start you may have a skewed view.
A lot of how you feel will depend on how you are going about tapering the dose. Pred cured nothing - you should have got the symptoms to a bearable level with the tarting dose and then you taper slowly in small steps to find the lowest effective dose. That is different for everyone - but it ISN'T a guessing game, you find it by a logical and careful progression from the starting dose to a lower dose.
You usually stay at the starting dose for a month or so - depends on your doctor, some seem in an indecent haste - and then reduce according to a reasonable plan. It isn;t fixed in stone - it must be adapted for your needs, but not too freely.
It works pretty well - but other recommendations are faster, reflecting the fear with which many doctors regard pred.
And no, yoyoing is about the worst thing you can do. Once you start overshooting, going back up, trying to go too low again and going back and forth like a headless chicken - every subsequent drop tends to get harder. You must be consistent , not being in a hurry but listening to your body and your PMR.
Yes, very good advice, and as I said before I think I have been too impatient. I will try going back, maybe to 15mg and do a really slow, tapered reduction, as everyone is telling me. Patience, and discipline!
When you decide to taper try to just drop by 0.5mg. That half an mg does make all the difference....very best of luck. I'm stuck on 7.5mg but happy to remain on that for the time being. Still experiencing slight pain in my upper arms, but had that at 10mg too.
That's a really great question that I've been asking myself, because, despite the excellent advice given here on banishing oral steroids over time (tapering), 'how you feel' while doing it is a very personal issue and maybe depend on your own expectations of quality of life.
As a male your age, you should know your own strengths and weaknesses. For me, diagnosed with PMR last September (my 70th birthday) was both a loss (gave up physical activities that I was used to and that were now causing too much pain to continue) but a relief when put on 20mg pred. To be honest, I can't remember what residual pain, if any, I felt. I knew that I now had a long road ahead to get through PMR via tapering and keeping healthy (my older sister has PMR too) and have found a lot of great advice on this forum as well as the medical stuff: cks.nice.org.uk/topics/cort...
for example.
Once being treated for PMR, 'how you feel', in my short time trying to taper, time my dosing, cope with 'flares' and live as sweet a life as possible, varies as much as it always did. Personally, I am living with some pain and some 'discomfort', which most people my age do; but it's manageable.
Although I have been told by my GP to take my full dose at breakfast time, I don't. That doesn't make me feel good, but out here in the real PMRsphere, I feel as though I can get away with a 3am/8am dose split and, physically, that does make me feel better!
Clearly, oral steroids are bad for your system but effective in treating PMR. The key is to take sufficient a dose, whenever is right for you, to enable you to function normally (whatever that is for you personally), while always having a tapering plan for the months ahead that eventually allows your adrenal glands to function again.
This is such a good question. I can only answer from my own experience of 10 years living with PMR, much of it unfortunately on too low a dose of steroids. For the first few years I knew no better, I was started on 10mg and told to reduce by 1 a month, so by 6 months I was on 5mg daily and in absolute agony, I could barely walk and struggled to work, needed long periods of rest. I just presumed doctors knew what they were doing and that was how it was to be. And like most people I hated beign on steroids so much I just wanted off them. My GP confidently told me it would all go away in 2 years - I know now that that was rubbish and he was quoted fromteh textbooks, not experience, as I was his first PMR patient. After 5 years I was confidently told by a stupid rheumatologist that the PMR must have gone away so to stop steroids, even though I challenged him on that. But it hadn't and when I stopped taking steroids, the uncontrolled PMR escalated with a vengeance.
I have always consistently been under-treated until the last few years where I have taken control. I am convinced that this under-treating led to the 'dripping tap of inflammation' (PMRPro's analogy) where the level of daily inflammation was greater than the steroids could control, which has led to an escalation of symptoms. I'm now at the stage after a recent flare-up about a month agao that I have to take 25-30mg of Pred a day to feel well. I have taken the pragmatic view that despite the dreadful side-effects of steroids, that is what my body needs right now and there is no point trying to treat it with less. If I reduce too much, the CRP markers go up, if I take enough Pred, they stay inthe normal range. My symptoms echo the same. My rheumatologist, the great Dr Mackie, concurs, and says if you need it you need it. If I take less than I need I flare up again and can barely move which is no life. I will try to reduce tentatively but it is a constant balancing act. If I feel consistently well for at least a few weeks I will try a lower dose, and if I feel OK stick there for a while.
Not all of us, perhaps not even many of us, fit the classic PMR pattern that doctors believe happens. I also probably need more Pred because I'm a bit overweight, it stands to reason that a bigger body needs more meds than a skinny little one - which is why in some countries like France they prescribe Ped per kilo of a patient's body weight. Don't get me wrong, I really hate the side effects of Pred like the moon face, insomnia, weight gain etc etc, and would love to be off it, but in my case, at the moment, I'm stuck with it and have to accept that fact. Resistance is futile and counter-productive!
All the best with your own journey, I hope this helps
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I was feeling so good. Then... WHAM!
At 6mg is this how I should feel? 
It's not going well and I am feeling low.
Why do I feel so weak
I am so thankful for these posts re PMR.
