Need your opinions

[Aqua47]

I am currently taking 2 mg of Pred with breakfast (about 8 am) and 5 mg at bedtime (10 pm). I have been on the total of 7 mg a day since the first of August, except for a few days of 8 when I broke my tailbone in a fall. I wanted to try to go to 6.5, but I’m having some pain in my arms and shoulders again when I wake up early in the morning. Also, I’ve been very tired this past week with no energy. What would you do?

[Hidden]

Hello dear Aqua47!If it was me I wouldn't taper if I was getting increased pain. I would stay put and wait a little longer and see if things improve.

Once things improve I would taper tiny amounts to try and prevent flares: at the moment I am tapering .25mg.

Small tapers work the best for me. I started my new taper 4 days ago- 8.5mg to 8.25mg.

Best wishes

x

[Aqua47 in reply to Hidden]

Thanks. The fatigue is really bothering me right now. The pain gets much better a couple of hours after I get up in the morning. The fatigue lasts all day

[Hidden in reply to Aqua47]

I hope you feel better soon.🌼There are lots of friends on here that have much more experience than me. I'm sure you will get helpul replies.

I've not reached that dose so I can't talk from experience but perhaps you are entering that tricky stage of the adrenals? I would consider taking all of the pred in the morning and see if that helps with the fatigue; try and pace yourself and stay at 7mg or even a little more: but I'm not a medic so please get advice. x

[NanaB43]

I don’t think you are ready to reduce!

[DorsetLady PMRGCAuk volunteer]

No reducing for now ..sounds as if you are having a flare, maybe a reaction from the accident, plus the fatigue could be that plus adrenals stuttering .

Address the flare first, and then see how you are.

CanI ask why you are taking a larger dose in the evening - usual suggestion for splitting dose is 2/3rd am :1/3rd pm -just interested.

See these links, one on treating a flare, one on adrenals

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Aqua47 in reply to DorsetLady]

I’m taking the larger dose at bedtime in the acid resistant capsules because the Pred was irritating my stomach. I figured it might take longer to get in my system because of the capsules. I tried taking it at 2 am and I seemed to have more pain in the morning. What time do you think would work best?Thank you all for your responses! I certainly can’t get sympathy or suggestions from my doctors

[DorsetLady PMRGCAuk volunteer in reply to Aqua47]

Okay-that makes sense. And if it normally works for you, then don’t change. Certainly not until you get flare (if that’s what it is) sorted.

[PMRpro Ambassador in reply to Aqua47]

OK, fair enough. It sounds as if you are taking a very long time to process the pred and the acid resistent capsules aren't working as they should. Is this only since you have flared or was it similar before?

Have you tried taking the doses the other way round? The majority in the early morning and a smaller booster later in the day?

[Aqua47 in reply to PMRpro]

I don’t know what tomorrow will bring, but I didn’t have pain this morning. I have been awake since 4 am, since a thunderstorm came through. It’s 6:30 here. I might try 4 mg this morning and 3 tonight and see how it works.

[PMRpro Ambassador]

Like DL I'm interested in why you are taking the large dose in the evening - unless you are on Rayos, which I doubt given the price in the USA! My other concern there is that you still have so much pain in the morning. Taking most of your pred late evening should assure a better morning.

Taking pred that late in the day is likely to interfere with the return of adrenal function - and that will be a factor at this dose and going forward, A high dose of steroid in the blood at midnight will discourage natural production of cortisol - taking it after midnight would be preferable.

But at present - no more tapering, A fall is plenty to trigger a flare so that is a distinct possibility.