How long to stay at 15 mg
Posted , 10 users are following.
Hi,
Hope you are all as well as you can be.
I could do with some advise, diagnosed May 16, increased and decreased over the months.
I had got down to 10mg, the death of my father recently had my symptoms through the roof.
I was advised to increase to 15mg which I have done for 3weeks.
I am concerned this may be dangerous and when should I reduce.
The Dr will say reduce to 12.5 having done that before not inclined and to do that again.
Any advise would be appreciated.
Julia
1 like, 32 replies
Michdonn julia85224
Posted
Julia 85224, after a bad flare I stayed on 30 mg Pred for 6 weeks till I was PMR pain free, now tapering down to 11 mg using DSNS taper method. The latest article on Pred states that Pred is not as bad as previously thought. Think positive and try to smile. Smiling 🙂
judith90525 julia85224
Posted
Hi Julia, I am sorry to hearabout the death of your father. I too was diagnosed with PMR in May and started on 20 mg Pred. I was tapering by 2.5 mg every month and was down to 10 when I too experienced a bereavement of someone close. I didn't cope at all and my lovely doctor suggested I went back to 12.5 which I did. Since then I have been using the DSNS ( dead slow nearly stop) method and am now at 11 mg and doing okay. There is no race to reduce your pred do what works for you. Accept there will be blips, go back up if you need to and above all be kind to yourself!
julia85224 judith90525
Posted
Thank you for you kind words.
I will stay at this dose a little longer, as at least I can take my dog out and try to clear my mind.
Which is taking a while.
Take care
lilian05079 julia85224
Posted
lilian05079 julia85224
Posted
Anhaga lilian05079
Posted
Anhaga
Posted
lilian05079 Anhaga
Posted
Hi Anhaga
My dietician kindly gave me that list plus others ....hard cheese, egg yolk, butter, chicken liver/breast, salami, ground beef..along with the leafy green veggies and romaine lettuce and cucumber and natto fermented soy with bacillus....any two portions of these foods is sufficient for daily vit K's......according to my dietician...but i eat more than 2 portions.....bon appetite!!!! my best wishes to you Anhaga.....
Anhaga lilian05079
Posted
It's the natto that does it, (plus the animal products if they are from grass fed animals)
Do you like it? I've never had it, understand it's an acquired taste. 
lilian05079 Anhaga
Posted
Hi Anhaga
Mmmmmm..i do have some natto in the freezer. A pack of fermented soybeans and soy sauce and rice. It is to be mixed with spring onions.......i haven't tasted it yet, but i cringe at the thought of it's slimey texture!.....when i do pluck up the courage to taste it i'l post my verdict to you......best wishes Anghada....
lilian05079 Anhaga
Posted
Hi Anhaga
Mmmmmm..i do have some natto in the freezer......fermented soy bean, soy sauce and rice to be mixed with spring onions....i will eventually taste it but the thought of it's slimey texture is off putting, not to mention the taste and foul smell which comes with it apparently..if i do pluck up the courage to sample it, i shall post you my verdict...best wishes Anhaga....
EileenH julia85224
Posted
So sorry to hear of the death of your father and I'm really not surprised you falred.
Fifteen mg isn't dangerous - I've been on pred for over 8 years, nothing has crumbled yet! And I have had months at 15mg.
You say you have increased and decreased since May - and I get the impression that your drop from 15 to 12.5mg didn't go well? Ask the doctor to allow you to drop by 1mg at a time. Many people find 2.5mg at a time too much though many doctors like to use it.
Top experts have said no reduction step in a taper should be more than 10% of the current dose. So 1.5mg at 15mg - fiddly, so use 1mg. It isn't slow if it works and you feel better. That is the aim of the exercise.
Others have mentioned DSNS:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
If the GP insists on 2.5mg despite your problems with it try this way.
But don't drop straight back to 10mg after this long back on 15mg - it is too big a step to do in one when you have PMR. It might work for other things - it almost certainly won't in PMR.
julia85224 EileenH
Posted
Hi Eileen,
Thank you for kind words and advise.
Although my head isn't in a good place the draining fatigue of this illness seems to have lifted at this dose.
I see a new rhematologist in Dec, and having gone up and down with pred, what feels like forever, I am determined to take it slowly.
I hope you are well.
gillian82551 julia85224
Posted
I recently had to re-start taking Pred having been taken off too rapidly by the Doctor (I was and am suffering from severe muscle weakness). I then had to start all over again as my immune system could not cope. The Dr put me on 15mg for 3 weeks and then 12.5mg. for 3 weeks then 10mg. and then to reduce 1mg every 4 weeks. It is safe to reduce that way. My problem started with muscle weakness due to the fact that I originally was tsking 15mg for too long.
Hope this helps
Gill
julia85224 gillian82551
Posted
Hi Gillian,
I hope you are well.
Yes I am sure you right 're muscle weakness, and I won't stay at this dose for too long.
Take care
EileenH julia85224
Posted
Muscle weakness due to pred is not inevitable and may not happen at all - it hasn't happened to me nor mny of my friends who have been on GCA-doses for a long time so far more pred. However - your doctor should arrange for some physiotherapist advice to give you some appropriate exercises to build the muscles, it doesn't happen on its own. Keeping walking as much as you can will help for a start.
Anhaga gillian82551
Posted
Unfortunately I appear to be suffering from increasing muscle weakness, despite exercising throughout PMR journey, so it's certainly not unheard of. I've been at a low dose for a long time, not on 15 for more than a month or five weeks followed by a quick reduction to 10 so it's a puzzle, but maybe just a combination of sensitivity to pred, which is a rather strong med, and getting older?