tapering pred

[2013mayo]

can anyone help me with severe exhaustion, nausea and feeling very weak, falling asleep all the time. My rheumatologist has asked me to cut down my pred very slowly, I’ve been taking 5mg for several months now and been feeling fine. Since cutting back to 4 1/2 every other day I’ve noticed how weak I’ve become, I’ve only been doing this since Christmas but I’m absolutely exhausted, as the time goes on I’m getting weaker and weaker. I can’t believe dropping half a mg would make such a difference. Do you think it could be the cause.

[DorsetLady PMRGCAuk volunteer]

As we know 0.5mg at low doses really can make a big difference, but in your case it could be a combination of the reduction and your adrenals really struggling. Nausea and fatigue are certainly symptoms of adrenals insufficiency - see attached link - but you need to speak to your doctor, and maybe request a cortisol test, and perhaps a return to 5mg to see if that helps initially…but if it is adrenals they sometimes do take a long time to return to functioning correctly, it’s not a quick fix.

healthunlocked.com/pmrgcauk...

[2013mayo in reply to DorsetLady]

thank you, I’ll see how it goes with trying to reduce, the nausea is getting more of a problem in the last few days and also the tiredness. If it doesn’t pick up I’ll have to contact my doctor.

[PMRpro Ambassador]

It is enough to make you feel the effects of adrenal insufficiency. And the effects are likely to increase over time. Time to speak to the doctor and get things checked out - a basal cortisol level would be a start - cortisol done on a blood sample taken at 9am or even a bit later (up to lunchtime is OK and still meaningful).

[2013mayo in reply to PMRpro]

thank you

[piglette]

The deathly fatigue has caught up with you. I found the only answer in my case was to give into it. It started for me at 5mg, it was so bad I went up to 6mg for a while.

[2013mayo in reply to piglette]

at the moment I’m under a great deal of stress, my husband is very ill and we are having to go to various hospitals for test and so on. Maybe it’s just a bad time to start reducing but I do try to go along with what the doctors ask me to do.

[piglette in reply to 2013mayo]

I found with deathly fatigue it is not a good idea to reduce. Theoretically you should not increase either as you are giving in to the adrenals being lazy about waking up, although I did in the end. Some doctors suggest you stay on 5mg for around nine months.

[DorsetLady PMRGCAuk volunteer in reply to 2013mayo]

You may try and go along with doctor’s wishes, but they aren’t always aware of other stress factors…and why would they be, unless you tell them. It’s not because you don’t want to reduce, it’s because you cannot.

[PMRpro Ambassador in reply to 2013mayo]

If you are under that sort of stress - DON'T reduce at this level, and possibly even consider a bit more pred under the same sort of considerations as Sick Day Rules. And TELL the doctors that is what you are doing and why.

While my husband was ill I needed more to manage the PMR and my doctors never ordered me to do anything else. It was up to me to do everything for more than 2 years and during Covid, there was no support available. Without more pred I'd have been in a mess.

[2013mayo in reply to PMRpro]

yes I think that is probably the best thing I can do at the moment, it’s all too much to cope with.

Thank you

[PMRpro Ambassador in reply to 2013mayo]

DL and I have been there too - PM me any time if you want a rant.