Drugged up feeling after prednisolone : On 20mg... - PMRGCAuk

PMRGCAuk

20,342 members38,113 posts

Drugged up feeling after prednisolone

Shandon1 profile image
11 Replies

On 20mg pred for one week, take in early morning, but it makes me feel spaced out, very heavy and drugged. It has dealt with all the pain but can I reduce it and when?

Written by
Shandon1 profile image
Shandon1
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Badgergirl profile image
Badgergirl

I felt the same on 20 mg so reduced to 15 mg after 2 weeks. However, the drop was too great and the pain came back for a couple of weeks. If you do reduce, try 1 mg at a time or at least no more than 10% of any current dose. Never reduce while in pain though. PMRpro has a brilliant reduction regime, which will be on 'tapering steroids'.

Shandon1 profile image
Shandon1

Thanks, useful information :)

PMRpro profile image
PMRproAmbassador in reply to Shandon1

It is such a pain finding things that you may have missed isn't it! Here you are - your very own version to copy and paste into a file of your own!

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

You may well be able to do 20 to 15 in 1mg steps taking far less time. The recommended starting dose for PMR is 15mg with 20 for more difficult cases - I think 20mg is probably where worse side effects seem to start judging by the people who find it difficult. Good luck - but go very gently.

mickt profile image
mickt in reply to PMRpro

Hi pmr pro.Been to see consultant today.Im reducing ,15 10 of pred alternative days for a month ,then stick on 10mgs for another month til I see him again.Also on 20mgs of methotrexate weekly.I trust my rheumy a lot he has been very open and honest with me he said he wants to reduce steroid safely.Which is good to hear.

PMRpro profile image
PMRproAmbassador in reply to mickt

They all want to reduce safely - this isn't about not being safe, it's about not hurting too much while doing it! It is safe to reduce in bigger steps - we aren't saying that. Not everyone can manage such variations without a lot of pain - that's what this is about.

mickt profile image
mickt

Yes I suppose we are all affected in different ways when reducing.Whatever works for the individual will apply.Why do some docs want to go quicker than others.Im a type 1 diabetic and could do without been on pred as sugars need a hell of a lot more control than normal,i suppose in my case the reduction level is erring on the side of caution.I had bad double vision when on 20 mgs ,so im doing better than my previous attempt.Im on 20 mg of dmard methotrexate weekly which must be helping .

PMRpro profile image
PMRproAmbassador in reply to mickt

Some doctors are more terrified of pred than others. It's as simple as that I think. Plus some doctors have more insight into how badly affected we are by whatever we suffer from. In the case of PMR symptoms they struggle - we look well even if we aren't. The text books told them PMR goes away in 2 years. GCA isn't familiar territory to many doctors and the thinking has been until recently that after 6 months the risk to sight is gone and you can set off down the dose of pred if the patient doesn't appear to have visual problems or raised markers. The most recent research shows that is far from true.

I'm fine about accepting the risk of side effects if the alternative is constant pain and immobility - both of which also have side effects of different sorts - plus a few that are common such as osteoporosis. No point me living for another 30 years in pain and unable to do anything at all.

suzieh profile image
suzieh

I started on 20 mg and after 5 days decided I felt very peculiar and very hyper......... My dr said it was ok to drop to 15 mg straight away. I felt much better on this dose and the pain was kept away!! Dr told me within the 1st 2 weeks of starting steroids you can even stop completely if you don't feel the steroids suit you. After 2 weeks of being on them your body depends on them so any reduction after this has to be done very slowly. Hope this helps you to decide what to do.

Shandon1 profile image
Shandon1

Thanks. Feel tempted to drop to 15 but am seeing the doctor on Monday so will probably hang on to the 20mg.

Hi,

This 'spaced out' condition is quite normal - so hopefully you have someone to help if you need it. Pred doses are 4 times as powerful as those we produce in our adrenals. These massive doses are needed to knock out the horrid inflammation that PMR gives.

I was on 30m twice and I know what you mean, but don't feel you have to apologise for outbursts, drugged up episodes etc. Just explain 'I'm on steroids' the very words will strike home. Most folks have heard that it's a powerful drug - they will sympathise.

After 20mg I dropped by 1mg every 3 weeks or so and it worked.

This may not work for you, and you might be forced to go slower, but don't go too quickly - that could induce a flare - up to the top again!

Pats.

madhouse1 profile image
madhouse1

I take mine late at night as if I take them in the morning I’m spaced out until after lunch.

You may also like...

Feeling unwell after reducing Prednisolone from 10 to 9mg

felt amazing. I reduced this to 9 mg after 4 weeks as instructed but after 3days the pain was so...

Side effects after prednisolone

been off pred for almost four weeks now and am experiencing some awful symptoms. Stomach pains,...

Increasing prednisolone at beginning of flare up

prednisolone when you have a flare up. I flare when I am dropping down on my pred. Last week I had...

Losing weight after (and during) Prednisolone

some of the surprises such as a treat day once a week when you are advised to eat up to 1750...

Skin sensitivity after stopping Prednisolone

Hi, I stopped Pred in November after approx 20months - starting dose was 20 mg. I noticed last...