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hwigston profile image

I have been suffering with light-headedness for 3 1/2 years and I have always been convinced that the Prednisolone is causing it. Last Thursday I forgot to take my medication and I was free of the light-headedness. I just couldn't believe the difference. I felt wonderful. I normally take the Pred first thing in the morning about 8 o'clock and within 1 hr the light-headedness would begin and last for the remainder of the day. However, after missing the dose on Thursday I did an experiment and took Friday's dose late afternoon. The light-headedness returned but not so bad, and I did not have to suffer for the whole day. Can anyone tell me if there is any reason why I could not take the Prednisolne in the afternoon rather than in the morning. At present I am on 9 mg and will reduce to 8 mg in a couple of weeks. I have GCA and PMR but at present free of pain and GCA symptoms.

14 Replies

I was told to take my dose in the morning because it can cause sleeplessness, if you don't have that problem then I don't see why you shouldn't take it in the afternoon.

Badgergirl profile image
Badgergirl in reply to Loco99

Another reason for taking pred in the morning is because it is less suppressive on the pituitary-adrenal axis than when taken at night when output from our own adrenals is naturally very low. When taken in the morning, as the concentration of pred declines throughout the day, there is not enough left circulating in the blood to prevent output of the pituitary hormone - ACTH (normally 15 pulses a day in decreasing amounts as the day goes on) responsible for stimulating output of cortisol from the adrenals. Thus, morning dosage helps to conserve output from our own adrenals, which is important on long-term therapy as it will help them to recover following tapering off. However, very high doses of prednisolone will block output from our adrenals regardless of time of day - so whatever time of day prevents wobbly feelings may be the best option for some. The dose of 8 mg your are taking is probably too low to block pituitary output of ACTH even if taken in the afternoon.

I too suffer with dizziness. Sometimes it is extreme. I am now taking an aspirin a day in addition to the 5mgs of medrol. Possibly the time of day may have something to do with it. I, too, have notice that if I don't take medrol for a couple of days, I have no dizziness. I have asked my internist and thoracic surgeon why this might be, the dizziness. They said they didn't know, different factors possible. May have to do with the prednisone. so many body changes with the prednisone. wish you health, Whittlesey

PMRpro profile image

The reason for taking the pred as early as possible in the morning is to come as close as possible to when the body naturally secretes a corticosteroid, cortisol, which is shortly before you wake, and this, it is felt, reduces the overall rate of side effects. Also the substances that cause the inflammation, cytokines, are shed in the body about 4.30am and taking the pred as soon as possible afterwards hopefully controls the inflammation before it really gets a hold.

Studies have been done that show the optimum time to take ordinary pred (the uncoated white tablets) to control the symptoms best is 2am. As a result a form of pred that you can take at 10pm and it releases at 2am was developed, it is approved for use in RA in the UK and there is a trial ongoing using it in PMR. It is already in use for PMR in most of Europe (I take it) but I'm not hopeful of it being used in the UK - it is very expensive relative to ordinary pred, costing up to £75 per month depending on what dose you are on (you have to combine 1,2 and 5mg tabs and you can't cut them).

Some doctors get very upset at the idea of taking pred at another time - but I know a few patients who take their pred late in the evening, it avoids the wobbly feeling many of us develop and it works well for them. Some people find it disturbs their sleep - taking it late in the evening means it doesn't get released for a few hours and you can get to sleep first. It might wake you early though.

One thing I would say though is you really should ask your GP to check your pulse/BP/heart during a "wobbly session". I had such episodes for a few hours after taking the pred, especially if I did something at all energetic. I ignored them and worked round it - but it turned out to be atrial fibrillation episodes. That can be caused/aggravated by both the autoimmune disorder underlying the PMR and pred. Despite the headlines yesterday - if you are treated using an anticoagulant it isn't dangerous - but untreated you are at a high risk of a stroke.

venezia1 profile image
venezia1 in reply to PMRpro

Hello - could you say more about the "high risk of a stroke"? Is warfarin the anti-coagulant you're on, and why was it prescibed? I have RA and GCA and often hear my pulse in my ears.

PMRpro profile image
PMRproAmbassador in reply to venezia1

This is a simplified description of what happens - it may never happen to you but it could if you did have atrial fibrillation. Your doctor is the best person to ask - a forum can never replace that relationship.

Your heart has four chambers, two smaller ones (atria) at the top connected to two bigger ones (ventricles) beneath. When someone has atrial fibrillation it means the two top chambers start to beat erratically and too fast. The blood doesn't get from the atria to the lower part of the heart properly and can't then get pumped round the body. It doesn't get to the lungs the way it should to collect oxygen and it isn't sent all round the body - including to the brain. If your brain doesn't get enough oxygen you feel dizzy and light headed. Sometimes you might feel your heart is beating fast, notice it thumping in your chest and your ears - but not always. Sometimes it is just a few minutes, sometimes it lasts longer.

When the heart is shivering away during this "fibrillation" the blood isn't being pushed out 70 times a minute as it should be - and sometimes there are small amounts that pool in a corner. These can form clots - and if they are pushed out into the blood vessels they may sometimes get caught in a narrow bit of blood vessel somewhere else in the body. In the heart that causes a heart attack and in the brain it causes a stroke.

Anticoagulants stop the blood forming clots so protect the person from the risk of stroke.

If you have GCA have you at least been told to take a low dose aspirin daily? That is one of the recommendations because we are at a higher risk of cardiovascular (heart and blood vessel) problems because of the GCA anyway. That isn't enough if you also have atrial fibrillation (a/f) but that needs tests to be diagnosed. If you have long episodes of a/f it is easier to find - but often a short ECG (tracing of your heart beating) isn't enough, you need a 24 hour version done. That means a small phone-sized recorder is attached to you and it is done as an outpatient.

I have to say, when it first started my GP was a rather dismissive - and told me to call an ambulance if I was worried when I had an attack! They carry an ECG machine so it IS the best way to get a tracing done quickly when you feel ill - but as I have a paramedic daughter and I worked in the NHS for years it did seem to me to be a bit extreme! However - looking back, I realise now that when I had these funny turns that I put down to pred I did have a funny sensation in my throat and neck. It could have been a heart attack. That is why I tell people on pred who complain of these sensations to get it checked out by a doctor and not just dismiss it as"the pred". It might not be.

hwigston profile image
hwigston in reply to PMRpro

Hi PMR Pro. Many thanks for your in depth reply. For the last two days I have taken the Pred before I go to bed about 10 to 1030 pm, to see whether it would keep me awake. I slept fine and found that for two whole days I have been free from the light-headedness. You have no idea how wonderful it feels. It has meant that I have been able to go for two lovely cycle rides without worrying whether I would fall off my bike!! As regards BP/pulse etc. I take my BP at least once a week and keep a record. I also took it during my very bad days, and there was no difference.

PMRpro profile image
PMRproAmbassador in reply to hwigston

Mmmm - the day I was admitted to hospital I was complimented on my superb BP: 130/80 at the age of 60 and on pred. 10 days later I had an echocardiograph (a 3D ultrasound imaging test of your heart) that showed thickening of the heart wall - a sign that I had had high blood pressure for some time. I had never had a dodgy BP reading and it was checked every few months and had had a normal exho done 3 years earlier!

I found my light headedness was about 2 to 3 hours after taking the tablets - so about the time the pred level in my blood was highest. If that's when you are asleep you won't notice it will you!

Oh I can imagine how wonderful it feels not to feel ill! My most recent nasty experiences were only just over a year ago - I never want to revisit them ever again! I'm so glad adjusting the time of your dose has made such a difference! Some doctors get very edgy about timing of tablets - others realise that we are all different so a bit of experimentation is OK. If it doesn't work, make you feel better, makes you feel worse, you can always go back to the starting point can't you!

hwigston profile image
hwigston in reply to PMRpro

Many thanks for all your responses. After waiting for over 2 years I have at last a referral to a rheumatologist so I will put the question to them. I have had ECG, Brain Scan MRI you name it I have had it, as it was originally thought it was a stroke. Everything was clear. It was then thought I had a spinal problem and was referred to the Spinal Unit in London. All clear. The last diagnoses was Migraine Associated Vertigo and was put on Nortriptyline. Wow they made it ten times worse. My original self-diagnoses was correct - Prednisolone. According to doctors etc it does not have that kind of side effect. How wrong they are. Many thanks once again. What a wonderful site.

Hi I have been taking pred for 21/2 years for PMR. I would say that I have suffered from light headedness for at least three quarters of that time, the strange thing is when I have told anyone e.g. doctors even on this site at the beginning no one seemed to know what i was talking about.I agree it is horrendous and when it goes away it is a great relief. I have described it sometimes as feeling drunk which I never am because I don't drink alcohol. For the last 3 weeks I have had what I have described as a stomach upset in reallity it is wind at the same time I felt tired, more than usual and my legs felt like two heavy weights accompanied by dizziness. However on talking to my daughter she has had the same thing. For the last two days I have felt better the dizziness has virtually gone and my digestion seems to have sorted itself out. Sorry to ramble but this dizziness is a real pain no one who hasn't suffered it can possibly know what you are going through.

Hi. You have my greatest sympathy suffering with the dizziness. You describe it perfectly when you said it is as though you always drunk, but as I wrote above by changing the time of day I take Pred the dizziness has gone. Absolutely wonderful. I hope yours will remain much better as well.

if it comes back I will try changing the time

survivalist profile image
survivalist in reply to PMRpro

Many thanks for this information. I have been on a wing and a prayer tempting a bad flare now on 8mg a day after a very rapid taper from 20mg in less than a month. 27 days to be exact, from starting on prednisolone.

I did not want to go back up to 9 or 10mgs if I could get away with staying at 8mg.

I read you post above and thought Humm I wonder if I could get a bit more out of the 8mg without going back up ?

Last night I took 8mg of uncoated Pred at 2.45am with a banana because this is all I had to eat with it, I will get yogurt from now on.

I woke up normal time.

I dont know how to convey this , NOTHING is the only word to describe it .

No Carpal tunnel no pain in my shoulders at all nice head on etc. I could go up stairs two at a time but I didn't, I'm not daft.

I dont know if its going to take me through whole whole 24 hours before 2am tomorrow.

I dont know if there is some increased steroid effect from taking the 8mg early as I would normally take it later nearer 8am.

If it does work it might tell me something important ie 8mg at 2am is equivalent to something like 10mg at 8am at least for me .

If this is the case its useful information to give back to everybody here to reinforce the logic above.

It also my tells me that I might be able take 7.5mg and get the down further but I'm not going to push my luck at this stage I've temped fate once to often already.

On the other hand other people that have been trying to taper for a while and cant, might think of using the 2am effect to be able to taper ?

PMRpro profile image
PMRproAmbassador in reply to survivalist

The basic problem does become how long the anti-inflammatory effect lasts for YOU. It can be anything from 12 to 36 hours. If you are at the lower end obviously the symptoms may start to reappear long before the 24 hours is up - and while shifting the time of taking the pred to 2am may make mornings wonderful, you do run the risk of evenings being less great. Some people wake early, take the pred a couple of hours before getting up and settle down until it works - finding that by the time they get up it is OK and any returning stiffness doesn't affect their sleep. Splitting the dose is the next stage - about 2/3 and 1/3 is common, the second dollop being taken about 2 hours before you expect the symptoms to return.

But I can assure you - the time you take the pred doesn't make much difference to being able to taper when it hasn't worked! I use Lodotra, the version you take at 10pm and which releases at 2am. I have no returning symptoms in under 24 hours - but I still struggle to reduce and always have done, whatever version of pred I've been on.

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