Fatigue

[Snookerball]

Hi does anyone get 15 minutes of severe fatigue through taking pred then it goes

And what is the best time to take pred

[SheffieldJane]

I know what you mean. If I ever take Pred in the early hours to coincide with the shedding of inflammatory substance, I get back to sleep really easily. When I was on a higher dose, I would take Pred, have a shower, then fall asleep on the bed, still wet.

[Snookerball in reply to SheffieldJane]

So should I take my predi earlier you think.

[SheffieldJane in reply to Snookerball]

Some people find it beneficial to take Prednisalone between about 2 am and 4 am. It can head the inflammation off before it gets a grip. You have the advantage of the fatigue you experience after taking it, so getting back to sleep is not hard. It is an individual thing though that can change over the course of the disease. I take it at around 7 am- 8am with live yoghurt to protect my stomach. If I happen to wake in the early hours I take it then.

[Snookerball in reply to SheffieldJane]

With taking it at 10 30 each day is it safe to take it at 6 in morning 4 and a half hours earlier or should I do one hour earlier each day..my bad fatigue comes on around nine or ten at night

[HeronNS in reply to Snookerball]

As you will be taking it earlier than usual there should be no problem at all. Just make sure, as Sheffieldjane says, to line your stomach with something like yoghurt.

[Snookerball in reply to HeronNS]

Will do thanks

[aladymo in reply to SheffieldJane]

Is yogurt enough? I was told a full breakfast ? I would very much like to take around 6:30 am with yogurt ✔️

[PMRpro Ambassador in reply to aladymo]

It has been for many people.

[SheffieldJane in reply to aladymo]

It has been fine for me for 2 years now.

[SnazzyD]

The sedative effect on me meant I had to take it at night but I changed to morning once I got to 5mg because I felt I needed to give my adrenals a good chance of waking up.

[PMRpro Ambassador]

I used to have about half an hour of real wobbles a couple of hours after taking pred. Others have said the same - and took their pred before bed so they slept though the wobbles.

The best time to take pred is when it works best for you - and a bit of experimentation is quite reasonable. The earlier in the morning you take it - the less inflammation has been developed and the less it has to do. Doctors say about 8am - and that is really about as late as you should take it.

[Snookerball in reply to PMRpro]

So it should be OK to take it at 8 in the morning two hours before my normal time.

Whats the wobbles

[PMRpro Ambassador in reply to Snookerball]

Just feeling really unwell and wobbly...

[PMRpro Ambassador in reply to Snookerball]

Why are you waiting so late to take your pred? Most people have the most stiffness in the morning, pred takes up to 2 hours to work - you have lost half the day. Many people wake early, take their pred and settle down for another couple of hours - by which time the pred is working and they can get on with their day.

The later 8am time is thought by many doctors to suppress adrenal function less - that may work for patients on a short course of a few weeks, but we are on above 10mg for months and adrenal function is suppressed anyway because of that. So taking it when it works best for you makes sense.

[SheffieldJane]

Yes and I guess the wobbles are the fatigue you experience if you keep going.

[PMRpro Ambassador in reply to SheffieldJane]

Exactly...

[powerwalk in reply to SheffieldJane]

Fatigue from Pred - people would think you were making it up! They automatically assume you are full of energy!!! How wrong can you be!

[Singr]

Absolutely. I could fall asleep into my cornflakes. I tried splitting them throughout the day but consultant said that was not a good idea.

[PMRpro Ambassador in reply to Singr]

Why not? Did it work for you?

[Singr in reply to PMRpro]

I am trying to remember what he said but one of the issues for me is retention of information. Since the onset of this PMR/GCA/fybromyalgia I have the retention powers of a teabag. Don't know if its the steroids or the condition itself. It made sense at the time. I feel no difference when taking them all together or separately.

[SheffieldJane in reply to Singr]

If your condition is PMR then you can experiment with split doses. With GCA the recommendation is to blast it all at once with the full dose. The retention thing is definitely a problem for me too. I have all sorts of memory joggers in place for passwords and appointments. I just watch films again as if for the first time. I still couldn’t tell you the plot or who was in it. Fortunately my husband of 32 years knows who and what I mean and helps out. I hope we get our faculties back!

[Singr in reply to SheffieldJane]

Haha!

I’ve had to invest in a lot of notepads

[PMRpro Ambassador in reply to Singr]

Either take someone with you or record the consultation - tell him it is because you can't remember what was said.

[Suet3942]

I usually feel shaky and really hot. Only lasts a while

[Bouvier]

I have been on pred now for 3 years now on 5mg and yes the early morning taking pred about 8am by 10 am start I start to fade like

I am wading through water ….then two weeks ago one day I forgot to take my early morning pred and felt really like my old self as I did not

realise that I had missed that dose till I checked my daily dose pill box.

I was told never to take them at night as your adrenals only wake up in the morning but I feel so much better and not so tired and dopey,

anyone else that has tried to go against doctors orders ??

[PMRpro Ambassador in reply to Bouvier]

There are quite a few people who take their pred at different times. The "Take it in the morning to reduce adrenal suppression" really applies for patients on short courses of pred, up to a couple of months. Longer than that and there is going to be suppressiona anyway so it makes sense to use the pred so you get the optimum result or the lowest possible dose of pred. If taking it at night means you sleep through the worst of the side effects - great!

[DavidMF]

During my 1st year I found the pains returning late in the evening, so I split my dose 1/3rd evening rest in the morning about 8.am. Later in my 2nd/3rd year I started to take my first tablets at 5.30am as I'm easily an early riser. This after reading advice, I felt it might mean I would be able to take less sooner in my reduction plan. It does give you issues around which tablets to cut in the DSNS process. But as things are progressing, I'm considering going back to all in the morning. All this came to a grinding halt at 4.5mgs a relapse and back to 10mgs. We are all different, keep a diary of how you feel, it really does help, especially when you get a Doctor (GP) who is only on page one of the handbook.

All the best

[PMRpro Ambassador in reply to DavidMF]

I bet if you had taken 10mg for a week and then gone back to (say) 6mg that would have worked too.

[DavidMF in reply to PMRpro]

A bit stuck, had a dust up with my GP who was annoyed that I'd increased pred (In a documented way over 10 days) "You should have seen me before changing" I pointed out it's often a 10 day wait, I was now in agony. she's told me to stay on 10mgs for 4 weeks and return to review. I got my self referred to our Top Specialist Rheumy at St John's, awaiting letter. I'm back to level, but suffering with a stiff neck in the mornings & evenings. Since all my other issues are gone/greatly improved (Hands, Shoulders)

I did have an X-Ray on my neck, slight arthritis, said the receptionist, nothing said the GP, but I think I'll refer you to Physio, which I refused. "They always leave me in more pain the following day"!! GP was frustrated "Whatever I offer, you refuse" you've only offered Physio and our local Rheumy who when I saw him three years ago wasn't too interested, so I asked to see a Top man.

GP notice I was getting upset at one point, I agreed.

I do believe the GP is a good Doctor, just sad that there seems to be a loss of interest.

At this moment I'm siting with a heated grain pack over my shoulders which does help.

Would love to go back to a lower level quickly and could ring and speak to a GP who may or may not agree. All very difficult and at times hard to handle without being like a bull in a china shop.

[PMRpro Ambassador in reply to DavidMF]

It is a rock and a hard place - if they want to be consulted on every move then they most provide a service that facilitates that. Here in northern Italy I can see my GP the same day - providing I turn up and wait. Generally it is a short-ish wait but if you are unlucky and a lot of people appear and get the unlimited audience we have it can drag on. You will be seen if you stay though. No appointments at the GP though - ever. However - although it wasn't an option before now if I had such an emergency I could ring the rheumatolgy clinic at the local hospital, explain the situation to a nurse and I would be told when I should come in to see The Man himself. It would almost certainly be the same week - unless he was away.

They really DON'T understand the level of pain and disabilty involved for some patients and how delaying increasing the dose can lead to a real problem. And SHE doesn't understand how PMR can be dealt with with a short sharp shock - she is complaining you upped to dose to cope but now is refusing to let you reduce again which you probably could quite well.

But unless you can find a different, less blinkered, GP I don't really know what you can do.

[DavidMF in reply to PMRpro]

Hoping the Rheumy will be my life line and my GP start to get interested.

Off to see a Chiropractor just in case this neck pain is just a trapped nerve or something simple.

Thanks for the comments, makes me feel more in touch rather than out of control, waiting for a GP who isn't up to speed and doesn't want to be.