PMRGCAuk
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Tapering the Preds!!!!

I was diagnosed with PMR in November last year ( had it longer than that though) and have been on a course of prednisolone starting at 20 mg and gradually tapering down to 4 mg . At this level my PMR seemed to be under control for the past two months but recently I've been waking up at daft o clock in the morning with pain across my shoulders and neck .

Have I reduced too far ? When I have a hot bath in the morning and take my Preds I'm fine . Should you be totally pain free , or just persevere with the aches and pains !

The first time I Heard of PMR and found this forum , with all the information and support I thought great at least I'm not alone , but I never realised how much of an impact it would have on my life !!!

Thanks to all the contributors for at least keeping my sanity in tact , you're a great bunch .

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Good morning 66Mac!

We see more of daft o'clock than we would choose. If it is around 2-3-4 am it might be a useful experiment to try taking you Pred dose with yoghurt or similar then. It has proved useful to some, to head off the body's shedding of cytokines i.e. The body's natural shedding of inflammatory substance. This may prove more effective in heading pain and stiffness off at the pass before it has a chance to take hold. I have found sleeping after doing this, longer and deeper.

Some people never achieve a totally painfree state. Pred of course brings discomfort of its own. Low dose Pred no longer masks old arthritic type pains, so they may pop up to say hello. You will have been less mobile, so to a degree there will be symptoms of weakness and being generally unfit to contend wit. Judging by your photo I imagine that you are someone who tries to keep fit and supple. It will take at least a year to feel properly well again even after you have finished with the Pred entirely ( if you do).

You seem to have made efficient progress in managing the dose and therefore the disease. Don't become impatient at this stage and ruin it for yourself. Careful management of this last lap is crucial.

If your pains are becoming more noticeable at this stage, I would pause in my reduction and let my Adrenal Glands catch up. The side effects will be negligible but the support to your body immense.

It is amazing that your sanity is in tact - long may it continue 😆.

Good luck and welcome if this is your first post, although your moniker rings a bell

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Hi,

An interesting post 66Mac! I guess I'm in a somewhat similar situation, albeit I have had PMR for very nearly three years.

Currently, I am tapering from 5mg to 4.5mg on Dorset Lafy's reduction plan, and have days when I have doubts about my decision to taper down again. Last time, in the summer, I was down to 4.5mg, and had to go up again a bit.

Yes, I have been experiencing pain and stiffness to a degree, but everyone says you shouldn't continue to taper down in these circumstances.

Having read through the Matteson Report yesterday, it does seem that the last few bits to the taper from below 5mg can be very drawn out, and I am wondering now whether I may be only half w ay through my PMR journey?!

It sounds to me as though your PMR is still alive and kicking, so I would tend to take it very carefully, and, if the pain continues maybe go up one mg to see if that clears things up.

Good luck

Paddy

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Hi Paddy,

I found it much more difficult to taper from 7mg down to zero than I did from 80mg down to 10mg. If you think about it logically (if that’s possible with GCA/PMR) there are a few reasons -

your adrenals are having to think about working again,

you are much nearer the level of Pred you actually require on a daily basis so you don’t have an excess sloshing about, and

it becomes harder to maintain the 10% rule when tapering, even dropping by 0.5mg is nearer 20% or above once you get below 5mg Pred.

Hence my plan! Which as I always say can be put on hold part way through if necessary - it’s only a plan, it’s not set in stone. Adapt it to suit you!

Good luck.

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Yes DL, that all makes a lot of sense to me. Guess I'm going to have to be more patient, and more patient again!!

You've put your finger on it when you say I am probably at the level of pred I need each day. Some days I feel fine, others the stiffness is still there. I think I read that PMRpro said that PMR fluctuates, and I would definitely concur. It just seems more pronounced at lower levels of pred.

Thanks for your input as always.

Best wishes - you are an inspiration to us all

Paddy

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I’m sure it does fluctuate. Even those in the best of health have up days and down days - a bright sunny winters day makes you feel better than a damp drizzly grey one!

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Hi 66Mac,

Good advise from Jane and Paddy, see my reply to his post and this is link to plan

healthunlocked.com/pmrgcauk...’s-simple-taper

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Good morning Mac!

Approximately 2 years with GCA here. I live between 3-4 mg prednisone. I had been using the DSNS method but whenever I get to more than 3-4 days in a row at 3 mg I run into trouble. I don’t have lofty goals, just wanted to park at 3 for a while. I have recently had to back up to 4mg. I am staying there until after the holidays are over and then start DorsetLady’s method.

Good luck, below 4mg has been challenging!

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Remeber though - however slowly you reduce you cannot expect to get below the lowest dose that manages each daily dose of inflammation. If you are even slightly below eventually the bucket of stored inflammation will eventually fill up - if it overflows you are in flare territory.

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Have you increased/changed your activity recently? Or it may just be winter drawing on...

Whatever the level of pain relief you achieved with the starting dose is what you are aiming for all the way through. But any increasing/return of pain is a sign you may either be overdoing it or you have gone slightly too low. If you have gone even slightly too low, over time the inflammation will build up and eventually create enough inflammation to cause a flare of symptoms.

If you ever have any doubts - go back to the previous dose where you were fine, wait a month or so and then try again. Once you get below 5mg you are on such a low dose the long term added effects are minimal - and it isn't a race. Except of the tortoise and hare variety!

It doesn't matter how slowly you reduce, what plan you try, you cannot go lower than that "lowest dose that manages the inflammation" without risking trouble.

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Well said PMRpro and so true! I like to fantasize however that if I poke my adrenals a little bit they will wake the hell up and help me out! Wishful thinking I know😩

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If only!!!

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Cheers Everyone ,

Thanks For your advice and comments , Got to see doctor next week so I think I'll go back up to 5 mg and see what difference it makes ,and then discuss it with him next week.

Patience is not my best trait , too much to do , bucket list getting longer and getting older !!!!!!

Mac66

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Probably the only way that bucket list will get shorter is by taking enough pred to let you get round to ticking things off! That is my concept at least - no compromise: enough pred to function well.

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Absolutely, if only the medics thought the same!

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Sometimes it's a case of if only the medics thought...

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😏 just seen another today - Orthopaedic for a change - on his list for knee replacement (after NZ trip). He also advise that my ‘bursitis” diagnosis was incorrect - he things it’s OA in right hip .......but as he said that’s for another day! Deep joy😊🤔

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Umm - deep, DEEP joy!!!!!!!

Which knee is it?

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Left knee....

.....right hip, although right knee is a bit iffy as well which is what I mentioned! When will I learn to keep mouth shut ....answers on a postcard.

Although right side is manageable for the moment, If left knee is anything to go by I’ve got a few years yet until I need to think about surgery!

In a couple of years time I might have to change name to ....Bionic Lady!

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What about a wheels transplant?

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Only if it’s a Maserati my dear!

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But of course! What else?

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Ha ha ha haaaa !! (best laugh of the day) ... Thanks for that PMRpro !

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Laughing about the medics and 'thinking' that is !

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:-)

You do have to remember I went to Uni with them...

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Hi PMRpro

I went to Uni with some smart and some VERY 'un-smart' people too - and it amazed me that some of my cohort never appeared to learn anything much at all the whole time they were there. I realised long ago the most 'intelligent' and/or insightful people I have ever met weren't inside the academic institutions that I was part of anyway. This is not to say all medics (for example) are 'bad' - they are of course just like any other category of humans - they come in all varieties and luckily for me I've had (mainly) 'good uns' so far - although since I've been on this forum I am disturbed so many seem rather less than 'well-informed'...

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Do you suppose that many of us hang onto idea that we will feel "better" when pred down to zero? Like taking a course of antibiotics or something. I have days when I just think when you feel better and pred goes must be great. Other times I think I don't care how long I take the pred. I will feel better when I feel better....hurting myself battling an illness that doesn't really have it in for me seems to be a waste of time and energy. "Giving in" to an illness is often seen as a weakness but sometimes giving in to the idea of it is the line of least resistance. I have literally beaten myself up with frustration and anger. Am sure that stress not been good for me. Staying here on 10mg until I feel that things have evened out. Hearing positive stories from those who are further along helps enormously.

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I think that is definitely a factor in the early days - most people think being better is the same as no medication. It isn't.

If someone has high blood pressure they often need medication - while they are on the medication their BP remains in normal range. But it doesn't mean they no longer have high blood pressure problems - it is only because of the drugs. If they stop the pills - their BP will shoot up again.

PMR is no different.

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I saw rheumatologist on Monday and when she saw my taper schedule she asked for a copy and told me to follow it😀. All my tests are normal and I am starting taper from 50 today

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