Reducing.

[Flosy]

Hi I am on 10mgs pred,am due to go to 7.5 on 1st Jan,could I just go to 7mgs.then 5mgs on1st Feb. I feel so tired and don't want to do anything,is this normal.any advice to help,thanks.

[DorsetLady PMRGCAuk volunteer]

You mentioned this in your last post a month ago, and both PMRpro and I (amongst others no doubt) said that a reduction from 10-7.5mg was too big.

I suggested you discuss with Rheumy particularly as you had recently flared……and advised this -

“below 10mg.. the official guidelines say 1mg every 4-8 weeks depending on patient and disease activity.”

Have you discussed?, or have you been over-ruled?

but as I said previously if you are already struggling, then I fear a step as big as this is probably going to make you feel worse….

But if you are determined/forced to reduce to 7,5/7mg then may I suggest you use a slower tapering regime - see this post -

healthunlocked.com/pmrgcauk...

As also previously advised, you can request 2.5mg tablets to enable you take 7.5mg (5+2.5)

[PMRpro Ambassador in reply to DorsetLady]

I endorse everything DL has said - 10 to 7.5mg is too big a step down.

[Koalajane]

Is there a good reason why you are reducing by so much?

[herdysheep]

The general rule of thumb for tapering is no more than 10% at a time. You are planning 25%! If you have had at least 1 flare and do not feel great at the moment then I would delay a reduction and then only by 1/2mg. I went too fast and paid for it. If you go too quickly and the inflammation is not controlled, it just takes longer and more pred. Self defeating.

[piglette]

There is no way that I would even contemplate dropping from 10mg to 7.5mg let alone 7mg. In your place I would question my doctor about such a large drop.

[diana1998]

Oh help 😣 Under 10mg I could only drop half mg every 4 weeks.

[Sophiestree]

I'm wondering if you think dropping so far will help with your tiredness and that is why you are asking the question. In which case I don't think that will be the answer to your concerns and may indeed exacerbate things. It is awful dealing with the tiredness I know, and I often clock watch waiting to see if I can go to bed (I don't like to go too early as then I'm awake in the night) but maybe try 20 minute naps during the day but no longer than that. Everyone else has covered the reasons why it isn't a good idea. If I am really slumped I try and force myself to go out just round the block or something to get me out of that dreadful phase. People really understand your tiredness, but that's kind of drop is likely not the answer.

[Benos123]

Hi,

I'd hate to rain on your parade towards zero however have you ever thought that your your present tiredness and lethargy maybe due to the fact that your your present dose of 10mg is TOO LOW and should be increased little by little, until you find a reasonable equilibrium and from where you can then re-commence tapering at a much more appropriate rate.

MERRY CHRISTMAS AND A HAPPY NEW YEAR TO YOU ALL! HO HO HO!

[Flosy]

Hi.do you really think 10mgs.is to low.what do you suggest I go to.

[DorsetLady PMRGCAuk volunteer in reply to Flosy]

You could try 12.5mg for a week and see if it makes any difference. If not it's probably not just the illness. If it does make a difference then stay there until after Xmas, and then try a smaller reduction, say 1mg. If you don't have 1mg tablets, ask for them.. and tell your doctor the tapering plan you have been given isn't working for you...it may works for others, but not you.

[Flosy in reply to DorsetLady]

OK thanks very much.merry xmas and a happy new year.x

[PMRpro Ambassador in reply to Flosy]

Not sure you need to go higher - providing you only have fatigue and not PMR symptoms but it might be an idea to stay at 10mg a bit longer and you really do need to discuss reducing more slowly, just 1mg at a time below 10mg is what top experts recommend.

[Flosy in reply to PMRpro]

Hi,I have been on 10mgs.for 2 months now.

[PMRpro Ambassador in reply to Flosy]

And how do you feel compared with your previous dose?

[Flosy in reply to PMRpro]

Still very tired and no energy,got to force me self to do anything,which is not me,at all.could I go down til 9mgs,on first Jan.

[PMRpro Ambassador in reply to Flosy]

You can do what you like - just don't step the dose down too fast. And prioritise what you do - the extra fatigue could be the pred going down or it could be the PMR almost surfacing. You can't really tell. Either way, you need to keep an eye on things.

[Benos123]

Hi,

Since my original post above, you've again heard from two of top advisors on this forum.

My post was aimed at stopping/shocking you from going any lower for a while, their advice is spot on and of course spells out your options in a much more eloquent way.

If you have already come a long way in a relatively short period of time, then be grateful for that because I can assure you that many other people on this forum will envy you, and would only wish to be able to follow the advice above.

PS: At only age 69, I've been on and off Prednisolone for longer than I can remember and as the years have gone by, I've become more successful and now even have my own "feel happy" taper plan as follows:

I get down to 10 in steps of 1mg every two weeks or so and only proceed when I feel happy that I should do so and then after that it's 0.5mg steps every two weeks or so but only on the basis that I feel happy about it. (no improvement = no reduction)

(I can guarantee you that your proposed steps of 2.5mgs would soon have you feeling wrecked and then you'll have to go back up by at least that amount to resore some balance and you are then worse off than when you started).

Note: If I detect any sign of feeling worse I go straight back up 1 mg or further, until I'm stable again and the process starts all over. (Slowly slowly catchee monkey)

Every good luck to you!

[singingloud]

Twice I was told to get to 10mg quickly and I flared so bad I had to go back to 15mg. What a waste of time. Then Mayo Clinic’s doctors agreed I was pushed to fast and I began from 15mg and slowly over a year I’m now down to 9.5 and going slowly to to 9mg. No flaring doing it this way. Below 10mg I’m only reducing by .5mg over six weeks. I’m looking for the dose that will keep the inflammation under control. I hope that helps. Also fatigue is a part of almost every one’s story with PMR.

[Benos123 in reply to singingloud]

Well said and done.

I'd got down to an "easy" 5mgs in August but had to go back up to 10mgs so as to cope with having no more pain relief from the NSAIDS that were withdrawn when diagnosed with CKD.

I then increased to 12.5mgs so as to get me through a hip replacement in late November and I'm now back on 10mgs without a problem and looking forward to further reductions once my 12 week post-op observation period is over!

[singingloud]

I held at 10mg for my spinal surgery in August and then waited till October to start my taper again. It was recommended by our friends on this forum.