Reduce or not?

[kathleen18]

Tomorrow first of the month I planned to start reducing slowly 1mg but today I am so desperately tired that I am wondering whether this is such a good idea? I have been on 9mg for a couple of months. Any thoughts please? I assume that it is the condition that causes such fatigue not the medication?

[PMRpro Ambassador]

What did you do yesterday?

To some extent it depends on the sort of reduction plan you use. If it were Dead Slow:

healthunlocked.com/pmrgcauk...

for example I'd say go ahead, try one day new dose and see how you feel. Then you go back to several days old dose so no big deal.

Below this dose there are 3 options for the fatigue. PMR, like most autoimmune disorders, causes fatigue, especially if you overdo things. Pred can cause fatigue. And from about here on you are into the physiological dose area and your body is having to start to produce its own corticosteroid, cortisol, again (it hasn't been doing so while you were above 10mg or so).

[kathleen18 in reply to PMRpro]

I did clean and clear out my attic at the weekend, didn't do

much on Monday but was a bit busy and dog sat yesterday. I find anything makes me tired but I do have to carry on living otherwise what is the alternative? I do rest for an hour every afternoon.

I was intending to reduce the dose by dead slow method and I will take your advice and try one day and see what happens. I suppose a lot depends on the individual and I am elderly so may get more tired than some - never had this problem before though!

[PMRpro Ambassador in reply to kathleen18]

I'm not surprised you are tired! I'd be knackered! Have some more reading:

healthunlocked.com/pmrgcauk......

Living well with PMR means learning to live with the gorilla. Don't poke it too hard and it won't wake up and trash the house. You have to learn coping strategies - and when you do, it all gets so much simpler!

[kathleen18 in reply to PMRpro]

Thank you for your advice. I will try slow reduction, if I wait until I am not fatigued then I will stay here forever!

[kathleen18]

By the way I liked the gorilla analogy! I'll try and remember not to poke him!

[Hidden in reply to kathleen18]

I am on about same point 're taper. I am around 9 to 10mg. I went to 9mg and felt awful. That sitting with mouth hanging open type of awful. I am currently trying dsns 10mg to 9.5mg as I can't do 1mg drops without pain and fatigue taking over. Rather than just rest for an hour in the afternoon i try short sensible bursts with a bit of rest each hour or so. I reckon 40mins of anything physical is worth 19 to 20 mins sit down and regroup. It keeps me going rather than grinding to a halt.

[kathleen18 in reply to Hidden]

I had thought of reducing by .5 mg but I will stick to 1mg and see what happens. I have just remembered that apart from cleaning the attic I made some marmalade the next day! Well that's not very energetic is it? Had an enforced quiet day today but developed an eye migraine during ukulele class this evening which made reading the music rather difficult but luckily it passed after about 15 minutes so I was able to get through it and didn't have to go home early.

[Hidden in reply to kathleen18]

I just bought ukulele!! Can't play it yet and seem to have big problem reading music but I like to play by ear. Thought it might help fingers keep supple.

Cooking tea tiring for me 😂

[kathleen18 in reply to Hidden]

You will love the ukulele. I can't play by ear and go to classes about 10 to 18 of us all beginners. All good fun I will never be brilliant but enjoy it. It is one of the few things I am determined not to give up!

[HeronNS in reply to kathleen18]

Poopadoop's comment reminded me of what I used to say, which was that every period of activity required an EQUAL period of rest and recovery!

[kathleen18 in reply to HeronNS]

Oh dear I have a lot to learn, when I feel fairly OK I think I can do anything!

[HeronNS in reply to kathleen18]

I'd be tempted to cut back on the physical activity and carry on with the taper, although very slowly. Treat yourself as gently as if you were indeed recovering from a broken limb or had had a case of flu.

[SheffieldJane]

Listen to your body and postpone it. You need to be firing on both engines.

[kathleen18 in reply to SheffieldJane]

Yes thank you I agree really. I think I am firing on half a cylinder at present.

[SheffieldJane in reply to kathleen18]

If you try a taper when you are not feeling too good the chances are it will fail anyway and worse case scenario you could find yourself flaring and then back to the beginning again. The right moment will come. I am a month behind my reduction from 7 mgs to 6 mgs and feel much more ready now.

[kathleen18 in reply to SheffieldJane]

Yes I am sure you are right. I was so keen to taper on the 1st and now have to wait. I must admit I am feeling particularly bad today!

[DorsetLady PMRGCAuk volunteer]

Hi,

My advice would be be don’t start reducing if you don’t feel well enough. Leave it a few days and then go for it.

In the great scheme of things a day here or there doesn’t matter- you’re in this for the long haul.

Your tapering plan is just that a plan - if it needs amending then amend it!

[kathleen18 in reply to DorsetLady]

Thank you for the advice. Having taken 8mgs I have now taken another 1mg! I think it is the wise thing to do really but was keen to reduce. I am certainly not feeling good at present.

[DorsetLady PMRGCAuk volunteer in reply to kathleen18]

Hi,

We are all keen to reduce, but, and it’s a big but if your illness needs a certain level of Pred then you need to take that level. If you don’t, then pain results!

You will reduce, maybe not as quickly as you’d like, but you WILL get there!

[tgca]

There is NO hurry so think of you and your body and not the bloody ought-to's and should do's in life... haha... maybe I should take my own advice!

[kathleen18 in reply to tgca]

You are right, I am just so fed up with feeling tired and rotten I want to make a bit of progress, but looks like I must try to be a patient patient!

[PMRpro Ambassador in reply to kathleen18]

But it is the pred that stops you feeling tired and rotten. It isn't perfect but it does a fairish job - if you let it.

[kathleen18 in reply to PMRpro]

Point taken. I just don't seem to be getting anywhere!

[PMRpro Ambassador in reply to kathleen18]

Ah - your idea of progress and getting somewhere isn't the same as mine and most of the "oldies" on the forum.

You are NEVER reducing relentlessly to zero - you have been reducing to find the lowest dose that gives the same level of control of your symptoms as the starting dose did. And at a guess that is maybe 8 or possibly 9mg at present. It doesn't mean you won't get to a lower dose - just not yet. Trying to force a reduction while the disease itself is still active will just result in a return of symptoms and feeling rubbish.

The pred has cured nothing - it is managing a situation until the underlying cause of the symptoms burns out and goes into remission. Which will take at least 2 years for a few and for half of us will take more like to 4 to 6 years.

[kathleen18 in reply to PMRpro]

Thank you for your explanation, doctors however good just don't explain things in a simple way. I originally thought that with a few pills it would all be over in a few weeks! My doctor did say it would take a bit longer probably a year which rather shocked me at the time. I have now begun to accept the situation but at my age (81) time is not on my side and I don't want to spend the rest of my days feeling like this. Until I now have been very fortunate with only usual aches and pains and minor illnesses, so I do thank my lucky stars, I look well too or so I am told (usually when I feel worst). t least I understand a bit more!

[PMRpro Ambassador in reply to kathleen18]

At least he admitted it isn't a quick fix - but a year is also totally over-optimistic. Perhaps they don't want to depress a patient who is already suffereingfrom depressive mood due to the PMR - but when it doesn't happen people end up here on one or other of the forums and I'm afraid I rarely pull punches. If it is going to be a long term condition I want to know that - not have my hopes raised I will be fine in a few months.

Take what you need to feel well.