tapering from 4.5 to 4 - some new symptoms

[humlies]

Hallo wonderful people: I am tapering from 4.5 to 4 on alternate days and have been doing this for just over a week. (I started on 15gm prednisilone in July 2020). For the last 3 days I have felt really unwell with not just the usual fatigue, muscle weakness etc. but also upset tummy, stomach cramps and headache especially in the morning. I was doing very well on 4.5gm, and rather unfortunately went to see my rheumatologist on a particularly good day! Such is life. Could the way I am feeling be a sign that my adrenal glands are not kicking in as they should? I would be very grateful for any comments.

[PMRpro Ambassador]

It is certainly my first thought - but having PMR and being a lowish dose of pred doesn't excuse you from other things. If I were you I would use one of the slowed tapers we bang on about here, soften the change in dose more than alternating the doses even at a half mg change.

I would stop the taper for the moment and see if you feel any better.

Is there any chance you could have caught a bug? Isolation has made us more susceptible to all sorts of things. It is even possible those symptoms could be seen with Covid.

[humlies in reply to PMRpro]

Thank you so much - this group is beyond price. Somehow I don't think I have a bug, since the symptoms fluctuate so much ; worse in the morning, better in the evening. I feel exactly as I used to on returning from amazing but very draining trips to Africa, where we were supporting people who had been traumatised by war. In that case I think the symptoms were caused by stress, which is why I think the adrenals might be causing trouble now. I will do as you suggest and taper far more slowly - heigh ho, but I can't complain.

[SheffieldJane]

I think that it would be a good idea to set the wheels in motion for a Synacthen Test - even stomach pain is a symptom of low cortisol. However, with completely different circumstances and a much higher Pred dose, I woke up feeling terrible- headache, dry mouth, stomach cramps, blocked nose, sore eyes. I think we get sick, just like normal people. Try bed and a Lemsip too. It helped me a bit.

[humlies in reply to SheffieldJane]

Thank you so much- this is a useful confirmation. My rheumy did agree to (not suggest!) a synacthen test, though I understand that I would have to have the 9.00am cortisol test first. If the initial cortisol test shows that there are normal levels, should I still ask for the synacthen test?

[PMRpro Ambassador in reply to humlies]

If you get a very low level, under 100, that is enough to say you have adrenal insuffiency. It it above 350 that almost certainly means you are OK and it is returning to normal. Inbetween is the grey area where you need the test. But whatver you do - make sure you didn't take pred in the 24 hours before the blood sample is taken! That messes up both tests

[humlies in reply to PMRpro]

Yes, thank you, I will hold on to this information which will be helpful should they just tell me that "everything is OK" when it may not be!

[SheffieldJane]

The first test will indicate whether you need the Synacthen Test. Good luck!

[humlies in reply to SheffieldJane]

Thank you Sheffield Jane - that's useful.