Advice re Tapering and Stressful Holiday to Japan

[Leafsong66]

Hi lovely members,

I’ve been more or less successfully tapering down to 7.5 / 7 mg of Prednisolone for GCA ( diagnosed last July). I am due to go to Japan for three weeks at the end of this month.

I know I currently need a daily sleep and frequent tests to cope with life. Is it wise to keep up the DSNS taper or should I go back to something like 9 that I know is not challenging my adrenals to wake up.

I had previously gone too quickly down to 5 and certainly got the impression that my adrenals are not yet chipping in.

Thank you for your input! I would be very lost without your helpful input.

[SnazzyD]

Certainly no tapering; that could be poking the bear. How do you feel on 7.5? I’d be inclined to go to 9mg but still take it easy and taper not too fast after return instead of bouncing back. But if you feel grand on 7.5mg you could stick there and be vigilant for low cortisol. Others will reply I’m sure.

[DorsetLady PMRGCAuk volunteer]

I’ve been more or less successfully tapering down to 7.5 / 7 mg

Not exactly a resounding endorsement there!

If you aren’t sure I’d be included to go back to 7.5mg or 8mg… and feel a bit more settled… and forget about tapering until you are back from trip.. and well over it.. so at least a couple of weeks after your return…

Maybe take few extra Pred on the day of travel - and rest day afterwards - and although not quite so long as some flight… pick the bones out of this link that are appropriate- but most of all enjoy…

healthunlocked.com/pmrgcauk....

[Leafsong66 in reply to DorsetLady]

Thanks so much Dorset Lady!

Yes, only a seven hour flight for us from the land down under to get to Japan. Not like when we come across the ditch to the UK!

[PMRpro Ambassador]

At least there isn't much of a time difference, it's similar to the UK and Europe if you are in Sydney. And that is what is hardest on us heading for the Far East I think.

IF 7.5mg is good - and as DL says, doesn't sound it to us! - then I'd stick but make sure I had plenty of pred to go up if needed. However - if you were better at a higher dose, maybe go back to enjoy the trip properly. And then think hard about how far you want to taper next time - are you sure it is adrenals or is it the PMR/GCA?

[Leafsong66 in reply to PMRpro]

To be honest. I just get by on the 7.5 mg but the deathly fatigue hits often when i least expect it. I recover very quickly (which is why i guess i brush it off when talking to others who seem to be hit much worse). I feel that its adrenals when i was below 7 and all the way down to 5 because of the mess of lightheadedness, dizzyness, low blood pressure and erratic heart beats. I still have varying levels of headache and occasional jaw pain but its difficult to pin it down to the GCA or withdrawal from the Pred. I definitely don't want to waste this holiday as we are catching up with our son who moved to Japan right when i first got sick with GCA last July. Thanks so much for your wise input. Now to put this plan to my Rheumatologist next Tuesday!

[PMRpro Ambassador in reply to Leafsong66]

Oh absolutely don't waste the holiday. Have you been to Japan before? It's amazing!

[Leafsong66 in reply to PMRpro]

Have only had one night there before, so can't wait to see it more fully. I have planned for three days in most places with the idea of resting at lunch time back at the hotel. Only having one thing to do either side of the big rest! I hope that's doable, but if not I will just go with the flow. Taking a big novel and some patchwork for some entertainment if I am holed up in a hotel whilst my adventurous and healthy husband goes exploring.

[PMRpro Ambassador in reply to Leafsong66]

The one thing I did find a bit OTT was the number of temples included in every itinerary!!! Like churches, they are all different - but a diet of solely temples gets a bit much after a while!

[Leafsong66 in reply to PMRpro]

Too many temples would be wearisome! We’re doing our own itinerary and apart from the gardens at the temples we’ll give them a miss.

[Janeval]

I was diagnosed with GCA at the end of January 2023. Started on 60mg Pred & am now down to 6mg. When I got to 10mg I started going down by 1 mg on the DS method but from 8 mg going down by 1/2 mg even 5 weeks. I'm going through a divorce & am moving in a few weeks & I do feel exhausted most of the time. Whether this is my adrenals or just everything else, I don't know! I don't intend to go any lower now until I've moved (in about 3 weeks time) & I'm over the move as I know it will be even more exhausting. If I need to I'll probably increase for a few weeks to get me through. If I were you I wouldn't go any lower at this time.