Moving time of Pred dose.

[Slosh]

I'm so sorry to be a pain again - just trying to clarify in my head.

When I started Pred 2 1/2 years ago I took it in the morning.

Then moved to taking it at about 22:30 - 23:30 at night - Did that for most of the time.

Then a few months ago started taking it at 02:00 so that it would be at optimum levels to catch the cytokine release at 4 am ish.

Anyway because I've been struggling around 8-7 mg (been there a few time) and worrying about my own adrenal needing to catch a wake up I decided that perhaps I should take it after breakfast and so moved the dose slowly in 15 minute increments. All seemed well until the last three days when I took it at 06:45, 07:00 and 07:15. I also take my thyroid medication in the morning and so to separate the two - took it at 09:15.

Well I've felt very strange the last few days - all day - wobbly, tingles, tired, sore neck, emotional and just so weird.

Would love input again - sorry

[DorsetLady PMRGCAuk volunteer]

Hi,

To me it sounds more like not enough Pred, rather than the timing change. Have you reduced in the last couple of weeks? Or have you done anything more strenuous or stressful?

As you’ve struggled at this dose before it might be that - as we’re always saying it is a difficult dose for many - and it’s just a coincidence that it’s surfaced just now.

[Slosh in reply to DorsetLady]

Went back to 8mg just over a month ago. Had got down to 7mg but the histamine intolerance was worse and so went back to 8 until I get to see the functional doctor. Last week I felt off like I was getting flu. I had been bouncing fairly gently 2x a day and taking a walk also carried some very heavy boxes - work also a bit stressful. Rested over weekend felt somewhat better. Until Wednesday.

[DorsetLady PMRGCAuk volunteer in reply to Slosh]

1 would say stick at 8mg for a while - and see if things sort themselves out. Think you’ve overdone things recently.

Hope you soon feel better.

[Slosh in reply to DorsetLady]

Thank you - I have been at 8 for a month now and will stay there. Was just wondering if changing the time of taking it was the cause or maybe the thyroid meds to close to the Pred.

[Hidden in reply to Slosh]

The thyroid pills should be taken first thing on an empty stomach, no others meds for at least an hour. It is most likely the 7 - 8MG issue but if you have an empty stomach and no meds on a night their is a school of thought that levothyroxine etc work just as well at night. If I meds up my thyroid/pred timing I do feel terrible.

[Longtimer in reply to Slosh]

I have felt like you last couple of days...it takes me a very long time to lower pred, …..but it was my birthday Tuesday gone, so had lovely day on North Norfolk coast, did lots more than normal, and did other days as well.....so think this had made me feel like you do, but will ease up now and rest to see if all is ok, if not will up dose 0.5mg to see......what a battle.....

[Slosh]

Oh that's interesting. Thank you.

I have been consistently on 8mg for over a month now. The only change is the time. Maybe the Pred / Levo too close still. I have a very slow metabolism maybe it takes longer for the Pred to be absorbed and the two hours is still too short a gap between the two.

[Blearyeyed]

If it was all going well before you got to 06.45 and you had already increased to 8 mg , why not stay on that dose for a little longer while you go back to the optimum time for you to take the Pred.

Maybe going back to 06.00 or even 05.30 and see how it goes for three or four days will help.

[Slosh in reply to Blearyeyed]

Yes that's an idea - thank you. I was trying to move it to after breakfast - 9ish to nudge my adrenals

[PMRpro Ambassador]

You are probably still too high for much adrenal nudging - and I think changing something that works is always risky.

Remember too - you are not reducing relentlessly to zero. If the body protests repeatedly at about the same dose then it is likely you have reached your destination: the lowest dose that manages the symptoms.

[Slosh in reply to PMRpro]

Thank you PMRpro.

I took a dose 8mg (which I've been in for a month and will stick at for a while) this am at 7:30 and I did not take my thyroid meds today - I have felt fine all day. I may need to get to take the Levo at 06:30 and the Pred at 09:30 after breakfast.