Which tapering off prednisone method to use

Thank you, your experience sounds like the sort of thing I might expect.  I may try upping the dosage first, though, and see if I feel significantly better.  And then start with one of the plans.  I now know better what to look for in terms of withdrawal, so hopefully will be able to keep on track.  Just trying to make sure I start from the right place!

Thank you.  It sounds as though the "dead slow" version may be best for me.  I think I will try upping my current dose and see if makes a significant improvement.  If it does I suppose I shoudl stay with it for a couple of weeks before starting the tapering again?  Just need to make sure I am starting from the best place!  I've already learned not to do the tough stuff - no more lawn mowing, for example....  It is actually nice to feel that I can renege on some of the household stuff without guilt!

Hi Anhaga,

Sounds like you've got yourself a good plan.  I found I had to decrease by .5mg once down to 8mg and it took me almost 2 months to get to 8mg from 9mg.  Our bodies know best, we just have to listen to them and be patient.

It is nice to relinquish some of our "duties". I get lots of help now with doing the floors, laundry and grocery shopping👍.

Hugs, Diana🌸

How do you manage that? My living room floor is disgusting! I wanted ceramic tiles in the kitchen area, himself wanted wood floors all the way through. I said that was fine - but he would have to remove shoes outside the door or the grit would ruin the surface. He won - but insists "my shoes are clean" and waits until he is inside to take them off, insisting there is no grit on them. I walk round in bare feet most of the time - I often get a bit under my heel - ouch!

Friends/a colleague have that rule - and darn him, he takes his shoes off on the landing there. 

Eileen you would think John is a modern man now, he even cleans the oven as i cannot knee anymore, do you want to borrow him, 

Sometimes its a bit too much, as i do try and do things and feel guilty he has to do more, but then i think let him, as he never did anything when we were younger.

oh forgot to mention he has ocd 

Now there's a result if ever I heard one! And yes - he's welcome to clean my oven any time!

I imagine you've run round behind him all your married life? Turn and turn about is only fair!

yes i have and as we speak he is doing the bedrooms, Eileen could i ask please are we ok to have the flu jab when on pred. Many thanks Mags

I always have mine - and so do lots of the ladies on the forums. It is not what is called a "live" vaccine which means you can't actually catch flu from it so it is OK.

Hi Danielle,  Thank you for finding this post - I think it must have been my first!  In the end I stayed at 10 mg for a few weeks then started dead slow nearly stop taper.  The stiffness, as I recall it, was increasing difficulty standing up after being seated for a short time.  I did not allow myself to get to the point where my shoulders were involved, and I didn't get disabled at all.  

I've just looked in last year's calendar.  It looks like I only stayed at 10 for 18 days before starting the dead slow taper, and I very quickly adopted the 4 day version.  So I must not have been very bad.  In fact I don't think I ever thought it was what people call a "flare".  I think it would have become one had I not caught it when I did.

Along with pred I've been getting low level light therapy from a physiotherapist, who is also helping me very competently with long-standing back issues.  I know not all physios are aware of PMR but mine is, and she's an angel!  

Because of a subsequent diagnosis of osteopenia (originally told incorrectly osteoporosis) I've also improved an already good diet, so that could be helping too.  I've been in good health most of my life, so I come from a good place having to deal with PMR - I didn't already have another underlying chronic condition.  I'll be 69 on my birthday next month.

Addressing your experience, I think you've gone past the point that I was at when I upped my dose, so you'll probably have to go up more than 1 mg.  If the pain is increasing I think it's definitely the PMR and, sorry to say, that doesn't go away on it's own, unlike pred withdrawal.  One other point - when I posted this I was asking about how I should feel.  I will be honest, I have never been entirely free of PMR niggles since the early days (15-11 mg).  If I think about it I'm aware of stiffness in the upper thighs and if I sit for a long time I sometimes feel a bit stiff, but literally only for seconds, when I first stand up.  Anything else I attribute to pred side effects - muscle weakness, thinning skin, dry hair, elevated sugar, elevated ocular pressure... so I'm very keen to get the dose down as low as I possibly can, but I have to concede that PMR is still with me.

Hope that wasn't too long....  Let me know what you decide and how you get on. 

Anhaga,

Thank you for your quick reply!

I think you may be right. I think I'll go to 15 for just a few days. Like a flash dose and then settle at 10 again. See if a quick blast helps. I have 10, 5 and 1Mg as I was supposed to continue the taper further.

I saw my doc today. He suggested staying at 10 and adding a fibromyalgia drug. What?! I definetly do not want to add another drug into the mix at this point.

I'm sorry to hear about your Ostiopenia. Im sure that can be quite painful. I'm glad you've found some relief with light therapy.

Thank you again. You make things so clear to me!!

Best wishes

Osteopenia has no symptoms!  I recommend that you do the 15 as you suggest, but don't drop by 5 mg all at once.  Try dropping to 12.5 and stay there for a few days.  If that's good you should be safe to drop by 1 mg every few days to the 10 point, make sure you are stable there and then start your slow taper.  This would make sure you aren't heading into flare territory again.   I think the standard drop is supposed to be no more than 10%.  Good Luck!  

It doesn't hurt? I'm sorry. I don't what I'm talking about lately.

Thanks for your advice. It seems right to me and I will absolutely follow it as I reduce back to 10. You've been a great help! Good luck to you too!!

Severe osteoporosis can lead to aches in bones - osteopenia is just a stage of lower bone density. It was probably defined as an arbitrary set of figures where they said, right, let's take this figure as the difference between one and the other - there isn't a lot of evidence that there is a real point at which fractures become significantly more likely. As I've said so often - many people with bone density that is defined as osteoporosis don't break bones, people with supposedly "normal" bone density do.

Thank you Eileen for making that clear.

Every now and again in the threads it is mentioned/suggested that one may take a bit of extra Pred during a stressful time to thwart off a flare. For example, a plane trip or time change.

Would you please explain how this is achieved? Thanks in advance

In the case of the plane trip/time change when travelling it is less to ward off a flare than to deal with the longer day that you experience when travelling from east to west.

For the vast majority of people the antiinflammatory effect of pred lasts from 12 to 36 hours  - in some people they can't manage on a single dose of pred per day because after about 12 hours the effect is beginning to wear off and the stiffness/pain returns and so they take perhaps 2/3 of their daily dose in the morning and the rest in the evening to carry them over to the next morning. Others manage really well on a single dose most of the time - until they are flying from, say, the UK to the USA. You have taken your daily pred in the morning and catch a plane in the early afternoon - and get into the US in the middle of the afternoon after a 7 hour flight, you still have another few hours until it is bedtime, you will get up the next morning well over 24 hours after you got up on the day of travel. That makes for a very long day - almost certainly longer than your pred dose may be effective for. It was also probably a very stressful day with lots of walking and sitting around with no chance to rest. So some of us take either a bit extra in the morning of the travel day, or take a bit extra later in the day to keep us happy to the next morning.

I wouldn't suggest it in any other situation and some people leave their watches at European time and keep taking their tablets according to that. But if you are in the USA you would find that 7am in the UK when you normally take your pred happens in the middle of the night - rather inconvenient!

If you are under a lot of stress some doctors will suggest taking a little bit more pred. Your body would normally make cortisol to help you deal with stress but it is unable to respond in the same way when you are already taking pred, the body knows there is plenty there most of the time and - just like a central heating boiler - the adrenal glands don't produce more when the usual amount is there so they get a bit slow and don't respond quickly. So in that situation it may also be a good idea to take a bit more - and that can be in stressful situations or if you are ill/injured. But it is a good idea to ask your doctor, not just up the dose on your own. Many of us also know our body and PMR well enough to recognise immediately that we are being threatened with a flare - and will need a bit higher dose. We don't wait, we take a bit more.

Thank you very much for your prompt and clear response. It was very helpful and appreciated.