By how much should I increase...: Been doing pretty... - PMRGCAuk

PMRGCAuk

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By how much should I increase...

Marotic profile image
9 Replies

Been doing pretty well reducing and now down to 5 but the last few days have seen increasing tiredness and muscular stress. Have also been increasing exercise over the last few weeks.

Today I feel completely wiped out and did not really want to even get out of bed(very unusual for me).

Took 6 today but should I try a spurt to 10 for a few days or just take it easier and stay where I am?

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Marotic profile image
Marotic
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9 Replies
PMRpro profile image
PMRproAmbassador

I doubt that it is the PMR that is causing the fatigue - it is your adrenal function struggling to keep up, especially since you admit to having increased exercise over recent weeks. That is usually not a good idea at the same time as a reduction - get the reduction safely out of the way and then work on the exercise or, possibly, even the other way round.

The only thing that will persuade your adrenal function to get its act together is remaining at a dose that is lower than your body needs to function well. You could try alternating 5 and 6 for longer if that helps you cope better with day to day tasks but going back to 10 takes you backwards at this stage.

Marotic profile image
Marotic in reply to PMRpro

Thank you for the advice.It was what I had hoped to hear.Can't wait to get off the stuff!!

PMRpro profile image
PMRproAmbassador in reply to Marotic

That doesn't mean you will get off pred any sooner. You will be able to stop taking pred when the underlying cause of the PMR symptoms has burnt out and gone into remission. Nothing you can do will speed that up - it came when it wanted and it will go when it is ready. Stop the pred too soon and you will end up back at the beginning, possibly even needing a higher dose to get things under control. Don't be fooled - and don't imagine you will be different, you won't.

Marotic profile image
Marotic in reply to PMRpro

Yes indeed but if I had to go back to 10 that would indeed increase the potential length of time needed to stay on it! A little optimism is sometimes needed though I am nothing if not a realist!

PMRpro profile image
PMRproAmbassador in reply to Marotic

You need what you need.

This isn't something where you take a higher dose to start which "cures" what is going on and then you reduce the dose and stop. It is an ongoing active disorder of the immune system which continues to create inflammation and as a result symptoms. It is a dripping tap which will drip as long as the damage has not been repaired - and there is no plumber to work out whether it is a score in the metal or simply a worn washer that is letting the water through.

It is possible that a short time, a few days, on 10mg would clear out the excess inflammation and allow you to return to marginally above the dose you are currently at. OTOH, if you don't clear it out, your baseline for the nearly full bucket is higher and the tiny amount of unmanaged inflammation will fill it and overflow that much sooner.

Refusing to listen to PMR potentially prolongs the suffering - all the pred is doing is managing symptoms. Either you take what you need or you might as well not bother at all - because if you don't sooner or later you will be back at the beginning.

ipsidipsy profile image
ipsidipsy

I totally agree with PMRpro. When at one stage I was trying to reduce the pred to 5mg I suffered the fatigue and muscle and joint pains, I consulted an Endocrinologist who tested my adrenal gland function and that was OK. He suggested that the symptoms were due to withdrawal of pred. I am happy to say that he must have been correct because now that I take 2mg, reducing next week to lmg for 1 day then 2mg for 2 and so on, the symptoms have passed. It appears that not emphasis is placed upon pred withdrawal by medics.

I do hope that your symptoms pass just hang in there.

Marotic profile image
Marotic in reply to ipsidipsy

Thank you I will.

dancersize profile image
dancersize in reply to ipsidipsy

You give me hope. I am at 6mg although my rheumy said I was stuck at 5.5 so stay there for three months to get it sorted. I went back to 6 when pain increased. Now do 5.5 every now and then to see if it is OK. I see the rheumy again in December. From posts here sounds like it might be my adrenal glands objecting to going back to work. I do find panadol osteo helps. I've been ballroom dancing for six years and have kept that up fairly well so exercise but not extra than I was doing. I'd like to get down to 5 but no plan to rush it.

PMRpro profile image
PMRproAmbassador in reply to dancersize

If panadol helps it is less likely to be PMR causing the pain. OTOH - if your rheumy is happy to leave you there take it and run!!!!

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