Adrenal Insufficiency or GCA or both?

[SudsSuds]

I have looked at the FAQs but cannot readily find an answer so here goes.By way of quick update I restarted pred about 3 months at 10mg because my PMR symptoms came back. I have been tapering at 1mg every 5 weeks using Dorset Lady's slow taper (thank you again). I am shortly to reduce from 7mg to 6.5mg on a 7 week taper. I have been here before too many times but now have the "take it slowly" advice from this forum.Over the last few weeks I have suffered from extreme fatigue, much worse than when PMR first hit or on previous tapers, also intermittent but when I get it persistent nausea and random pain which just pops up quickly from nowhere in my muscles and joints, usually in my limbs.Is this likely to be adrenal insufficiency? If so should I hold at 7 for a while then continue to taper or should I continue tapering to "wake up" my adrenals. I am thinking of asking for a basal cortisol test, what do you think? I did have a Synacthen test which was fine but that was a year ago.The other thing I have experienced recently are frequent headaches which can last all day. They are not particularly severe and affect my forehead mainly. Also my eyes do not feel quite right, like they have too much pressure and hurt a bit. Could this be GCA?

[SnazzyD]

Personally I found 7mg to be the worst of both worlds. Not enough to do me for the day but enough to keep the adrenals dozy. On a hunch that this was the case I decided to drop 0.5mg eased in over 4-6 weeks. Once I got to 5mg I felt a lot better. It wasn’t easy and I had to put up with feeling horribly tired and wobbly at the slightest thing. Life was very dull for a long while. Nausea and abdominal pain can be symptoms and fluey aches.

Given your other symptoms, something else could be going on possibly in parallel. It might be worth speaking to a doctor. They might do a cortisol test to see if it is that. If it is not great, don’t despair because as I said before, 7mg is enough to suppress the adrenals. It doesn’t mean they won’t recover. My Endocrinologist wouldn’t do Synacthen tests until patients were 4mg or lower for this reason too. What dose were you on when you had the test before?

[SudsSuds in reply to SnazzyD]

Sorry for delay. I am seeing my GP next week so will stay at 7mg until then (I am due to drop to 6.5/7 tomorrow so no big deal). Looks like something I will have to tough out. I hope my GP will offer me the test. The Synacthen test was June last year. I am pretty sure I was below 5mg at that point.

[DorsetLady PMRGCAuk volunteer]

Certainly fatigue , nauseas random pains sound very much like adrenal insufficiency. To be honest, I’d stay at current dose and allow them a chance to catch up

But the headaches do need checking -and have you had eyes tested recently? It may not necessarily be GCA, but they could be affecting pressures, and account for them being sore as well as causing headaches so need a proper investigation.

[PMRpro Ambassador in reply to DorsetLady]

Is that a mangled tobehonest ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Sure is! Ta

[SudsSuds in reply to DorsetLady]

Sorry for delay. Said a bit in my reply to SnazzyD but to add I last had an eye test last year (everything happened last year!) which was ok. I'll start with my GP - she might look at my markers as well.

[piglette]

Sounds like the Deathly Fatigue has raised its ugly head.

[SudsSuds in reply to piglette]

Yes indeed. I fall asleep without realising it. Suddenly it's two hours later. I hope I get through this stage asap.

[piglette in reply to SudsSuds]

I find that I fall asleep in the middle of TV programmes which is really annoying.

[HeronNS in reply to piglette]

Especially just before the denouement of a mystery show.

[piglette in reply to HeronNS]

I now record everything because of my sleepiness. The trouble is I then take hours finding out where I went to sleep!!

[OldPenny]

"The other thing I have experienced recently are frequent headaches which can last all day. They are not particularly severe and affect my forehead mainly. Also my eyes do not feel quite right, like they have too much pressure and hurt a bit."Along with the random muscle pains and random bouts of sleepiness, these symptoms seem very familiar to me. I am slowly tapering down to 2.5mg pred currently and have assumed that this is what I have to put up with for a while, as my adrenal glands continue their reawakening. These symptoms are worse for me when I have a cold (frequently this winter) but I have no GCA worries. Just for info.

Hope you get some answers soon. OP

[SudsSuds in reply to OldPenny]

Yes, we seem to be in a similar position. I hope my upcoming GP appt helps.