Feel “Wooden Headed” after taking prednisone

[Lauren103]

I have GCA and PMR; I would like to try a change to my prednisone schedule. I have been taking it in the morning, after breakfast, for 27 months. I wake up feeling fine; an hour or so after I take my meds (currently at 15mg) I get a clunky, slow feeling in my head. Almost as if my thinking ability slows down. This lasts for at least 3 hours. I’d like to try taking the prednisone on a different schedule. Maybe splitting it or taking it at bedtime. I’d also like some advise on the best way to transition into this new schedule. I get worried that any change could bring on a flare or setback. I was hoping that someone else might also have experience with this. I am anxious to feel better if possible.

Thanks

[alvertta]

My doctor switched me to half in the morning after breakfast half after dinner when I was on 40 mg. No side effects from that change. I am now on 35 mg and take 20 after breakfast and 15 after dinner.

[Lauren103 in reply to alvertta]

Thank you very much for your help. That’s exactly what I was interested in finding out.

[SnazzyD in reply to alvertta]

That’s interesting, at that point I pretty sure my GCA would have flared without the full whack of Pred in one dose.

[JohnnyQ50]

Hi Lauren,

I started on 30mg at breakfast last October but found it was wearing off by night time and I was getting a few arm aches so switched to 2/3 with breakfast and 1/3 at dinner time and this works for me, I told my Rheumy and she was ok with this.

If you are concerned about switching straight over you could do it gradually over several days by decreasing the morning dose by one mg/day and taking them after dinner until you find the right balance for you.

I am now on 7 and 4 and ok so far, next month I am targeting 6 and 3.

[Stella3 in reply to JohnnyQ50]

Hi I just saw your response to Lauren’s question about dividing her prednisone dose. You casually mentioned arm aches as something you get when you feel your Prednisone is wearing off....I have PMR/GCA and find that one of the symptoms I had and have is a weakness in my arms and mild pain....is this what you are talking about? Thanks

[SnazzyD]

I used to take my Pred at bedtime because of this effect on my head; I couldn’t function. When I got to about 5mg the Endocrinologist advised changing to the morning because it was better for my adrenal axis which we were wanting to wake up. This I did and found was ok because the head effect wasn’t bad enough to be a problem at this dose. I can’t see why you would get a flare if you took some extra to tide you over the change or take double dose in 24 hours. The experts on that one will comment soon.

[PMRpro Ambassador]

You can switch to nighttime dosing simply by taking a dose in the morning and another immediately before bed - you may have a bad night the first night or so but the extra in the 24 hours won't hurt - you may even have an extra good day! And then the wooden brain feeling should happen overnight.

[Sho-Sho]

I experienced exactly the same symptoms - started at 60mg for GCA, fine for the first hour then this awful dizziness took over for most of the day. My Rheumatologist said that by the time I got to 15mg is should improve but to be honest it wasn't until I got to 12mg that the horrid sensation went.

However she was keen I should not split the dose, but I must admit I didn't switch to taking the pred at night, in retrospect I regret not trying it, definitely worth a try.

Hope things improve.

[Jocelyn344]

Switching to night-time was fine with me, and reduced the fuzzy feeling. What I am having trouble with is getting below 12.5 per day. Reduced from 30 last February, and it getting more difficult. Stress does not help.

[PMRpro Ambassador in reply to Jocelyn344]

How big reduction steps are you trying? 2.5mg at a time?

[Lauren103 in reply to PMRpro]

Hi

At this point, am reducing more quickly- every 2 weeks currently. This is because I also take Actemra by injection every week. However, I have had 2 ear infections and a tooth infection recently. The recommendation from the doctor was to discontinue Actemra while taking antibiotics. So, I will move from 15 mg to 12.5 this week. Once I get to 10 mg, my taper will be slower- probably 1 mg a month. Thanks for the info on the night prednisone schedule- I’m trying it and I think I’m feeling somewhat better.

[PMRpro Ambassador in reply to Lauren103]

Beware - Actemra does not necessarily do away with the need for pred. About 50% of patients in the clinical trials got off pred entirely, the rest needed some and some actually flared. Actemra is just a very expensive steroid sparer, it isn't a cure.

[Jocelyn344 in reply to PMRpro]

only 0.5mg per time, at 4-6 weeks. Have just had a big flare up yesterday, aching muscles in thighs, lower back pelvic region. Rest and sleep have helped, but it is difficult. Have had a lot of stress, selling property (small) and dealing with all that paperwork, supervising letting of son's croft near us, husband with bronchitis for the last fortnight, car breaking down etc.

Very much appreciated one of your replies in which you told a lady that she is 'not doing nothing' but coping with a nasty condition.

[PMRpro Ambassador in reply to Jocelyn344]

Under those circumstances I don't think you should be reducing at all. The stress won't help in any respect - I've been under horrible stress for the last month, lesser but ongoing before that. And boy is the PMR flaring - think I've managed to get back to 14mg though, touch wood!

[Jocelyn344 in reply to PMRpro]

Thank you, that is what my husband (retired Cardiologist, and prior to that a General Physician) has been saying as he is having to put up with me. How long should I stay on this dose before trying to reduce? Another month?

[PMRpro Ambassador in reply to Jocelyn344]

I think you have a very sensible doctor on call there! I would say there is no definite time limit - until things calm down and/or you feel able to try another tiny reduction. Remember what I said: Actemra does NOT always replace pred - whatever a doctor may believe.

Out of interest - are you reducing suddenly, from every day one dose to every day the lower dose? If so, this may help:

healthunlocked.com/pmrgcauk...

[Jocelyn344 in reply to PMRpro]

yes, am reducing 0.5mg from one day to the next. What else might help?

[PMRpro Ambassador in reply to Jocelyn344]

Read the link I gave you

[Jocelyn344 in reply to PMRpro]

Thank you, stupid of me not to see the link. Now copies to be read and inwardly digested.

[PMRpro Ambassador in reply to Jocelyn344]

No - I have to say, I find they don't register visually too well very often,

[Jocelyn344 in reply to PMRpro]

Perhaps if the links were typed within the context of the message, with a bit more chat to follow?

[Jocelyn344 in reply to PMRpro]

Can I ask why there is the magic number of 10MG? Surely the patient weight should be taken into consideration. it would be if it was an anaesthetic.

[PMRpro Ambassador in reply to Jocelyn344]

It isn't an anaesthetic though! Weight has relatively little to do with dose of pred and generally they start at a dose that is high enough to be more than enough though not excessive and then taper the dose in small steps to find the lowest dose that manages the symptoms as well as the starting dose did. That takes the weight question into account for the longer term by finding that particular patient's ideal dose by a process called titration. Usually it is done by starting with a low dose and working up - but in the case of GCA especially, a higher dose is required immediately to reduce the inflammation quickly and reduce the risk of sight loss. There are a lot of different factors involved besides weight: bioavailability can vary between 50 and 90%, the activity of the underlying disease varies a lot, more activity will require a higher dose, different people respond differently over and above the bioavailabilty.

At about 10mg you are getting close to the equivalent to the amount of cortisol the body requires to function properly. Without it you are at risk of becoming very ill. While you are on high doses of pred the adrenal glands don't produce any because the feedback sysem tells them no more corticosteroid is required, this happens quite quickly at GCA doses, and over time the adrenal glands go into hibernation and take time to wake up once the pred dose is below about 8mg. So all reduction approaches will slow down at 10mg or so. How long it takes adrenal function to return also varies from person to person and while Actemra allows lower pred doses to manage the inflammation it plays no role in the adrenal function question. That has to come back naturally. There is also the point Actemra is not a replacement for pred and not all patients can manage with no pred. So reducing slowly makes sense there too. About half of patients require both Actemra AND some pred - and you don't know in advance which you are.

[Jocelyn344 in reply to PMRpro]

Dear PMRpro, thank you for the best advice I have had yet, and I was diagnosed in 2011. Makes a lot more sense.

May i ask another question? Have been on 12.5mg for a couple of months, then the flare last week. Would like to start tapering, should I wait another week or so? Am making a timetable, is there a spreadsheet available ?

[PMRpro Ambassador in reply to Jocelyn344]

Hum - if you flared at 12.5mg while on Actemra it does beg the question whether you are ready to taper even despite the stress.

There is an App somewhere but I don't know anything about it - too techy! I find a calendar and a pencil, counting out the days. quite adequate

[Jocelyn344 in reply to PMRpro]

Am not on Actemra, never even been suggested. Chewable dispirin works well for me, only when necessary, also an LLD (= long lie down in the pm)

Agreed, paper, ruler and a pencil will do the trick

[PMRpro Ambassador in reply to Jocelyn344]

Oooops - sorry, looked at the wrong post further up! The nesting of replies on this forum does drive me nuts sometimes!

[Jocelyn344 in reply to PMRpro]

I think you are doing a marvellous job. Thank you

[piglette in reply to Jocelyn344]

If chewable disprin worked well have you looked at the possibility that all the pain you have may not be wholly due to PMR?

[Jocelyn344 in reply to piglette]

Maybe, have osteoarthritis as well, and the PMR was not diagnosed for at least two years before treatment was started.

[piglette in reply to Jocelyn344]

Ah that would explain it.

[lesley2015 in reply to PMRpro]

Its a shame our Rheumys/GPs dont remind us of this when then send us on our merry way reducing, I had forgotten what we all seem to agree to that stress is a major factor of flares, down to 2mgs, stressful family issues for over 3 months, now back up and reducing from 40mgs. Cross at myself actually .... but lesson learnt!

[Lauren103]

Right, that is absolutely true. Actemra was suggested for me because I had so many flares while tapering. You, know how that goes. Hopefully, when I get to 10 mg this time, my taper will be very slow and successful . I am hoping to be able to discontinue Actemra when I begin 10 mg.

[LarryLeek]

Just make sure you have eaten something before you take the preds because taking them on an empty stomach can damage your stomach lining as well as you esophagus.... I take my 1st dosage @ lunch & 2nd @ bedtime, I have no issues.

[Lauren103]

Thank you,

I will definitely eat something beforehand.