Is it helpful to take my Pred in 2 doses. I am down to 7mg a day but having quite a few symptoms. Stiffness in my legs, horrible fatigue and a general feeling of being unwell after taking the dose. I have been taking it at around 2am as that has suited me before but now can’t sleep and feel breathless afterwards. Been taking steroids for 4years.
Feel lost as don’t think doctors aren’t sure what to do either!
Hi Tonysue
I split my dose last year 2.5mg coated Pred at night & 5mg in a morning, this was because I was going on a Cruise that involved early mornings so l wanted to be able to make it in time for 7am each morning. I took coated Pred at night so it didn’t start working for about four hours after taking it.
I returned to taking it all in a morning after being home a week or so.
If you are feeling breathless & wide awake maybe it might be better to split it then ultimately get back to taking it all in the morning.
I had the breathless issues when l was on a much higher dose & had to sleep on three pillows.
Has your GP checked your blood pressure & pulse/heart rate?
I don’t like dark bedrooms, l need to see some light & still sleep on two pillows.
If you decide to split your dose maybe 1/3rd at night 2/3rds in a morning & consider the coated variety at night so it starts working during the night after you’ve gone to sleep.
They’re will be others along soon who’ll be able to offer you more advice.
Try sleeping up a bit higher & talk to your Dr about splitting the dose first.
Best Wishes
Mrs N 💅🏼
Thank you Mrs Nails. I have an electric bed so can sleep higher. My husband has to have his BP checked frequently at home so I will do mine at same time.
I am going to try splitting.
😊👍
Hi,
As Mrs Nails says you need to get the breathlessness checked, it’s quite common at higher doses, but wouldn’t expect it once you get lower!
I would say the fatigue is adrenal glands related, going on my experience, and really that is just a matter of time and slow reductions to jolt them into waking up! Around 7mg can be very problematic for many.
This might help - healthunlocked.com/pmrgcauk...
What are you taking with the Pred at 2am? Do you take a PPI - Omeprazole or such?
You could try splitting, a smaller dose before bed may be better - sleep-wise and nausea-wise.
Thank you dear Dorset lady. I take. Lansoprazole and I take the Pred with milk and a little piece of banana (ugh) which helps the tablets to go down. Will try splitting them.
I forgot to say the breathlessness wakes me from sleep. Not bad moving around.
Happy holiday everyone.
Gorgeous day in Dorset, not a cloud in the sky.
Had breakfast in the garden with just the birds for company - as said by TH “Far from the Madding Crowd”
I'd think that increasing your dose again might make more sense if you were OK before. You aren't reducing relentlessly to zero - you are looking for the lowest dose that gives the same result as the starting dose did. The underlying cause of the PMR symptoms remains active for years, with a median duration of nearly 6 years. Which means that for some it can last longer.
Like DL I'd suspect that the fatigue, and possibly other things, is due to low adrenal function. You are down to the sort of dose where your body has to take up the slack again and that can make you feel fairly wabbit.
As Dory the fish, friend of Nemo, said , Just keep swimming.🙂 just would like to know which direction I’m going in.🤔 My doctor is certain I am over PMR. (4years) says an MRI shows issues with my spine and anyway I’m 73 and it's wear and tear. So have gone on reducing and taking pain killers as he told me. But lots of trouble with hamstrings and calves and tingly feet. And generally feeling rotten. But must admit that doing gentle exercises for a painful back has helped a lot. So he may be right. But I just feel rudderless. No confidence in anything.😞 Sorry to be a moaner. Just be nice to me and I’ll be fine.😳🤪
"My doctor is certain I am over PMR. (4years)"
but he may be wrong...
I know he could be wrong but he’s all I’ve got besides this excellent forum. Reading some of the posts from others have helped as someone mentioned old injuries return without the steroids to help,which is what is happening to my back,maybe. And the fatigue can be awful, and that is happening to me too.
In doc’s defence I don’t feel feel the same as I did those years ago when I was diagnosed.
I’ve never had a blood test that’s shown anything positive, they always come out clear. I know that’s common but doesn’t help when you doubt, yourself, what’s going on.
So I have Dorset Lady’s reducing programme and will keep on with that. And using our forum as a helpful comfort.
No - you may not feel the same, but my flares now are rarely the same as the PMR was when it first started. It seems there is a component of breathlessness for me too now which there wasn't before.
I'm not amused - but at present the less pleasant aspects of this flare are managed nicely by pred!
Hi Tonysue
You've had lots of advice so need to decide what might be best for you, another one for the mix now:
I've been on pred for over 4 years now but never split the doses, didn't get the breathlessness you describe though, so might be worth getting that checked out.
I would say the same as PMRpro going back to the previous dose you were okay on is generally the rule of thumb when symptoms erupt following a reduction - and staying on it until you feel better before starting again and then by a much slower dose by .5 instead of 1mg maybe.
I've followed the dsns taper as always suffered steroid withdrawals, sounds like you could be suffering like that? and same as DL as I got lower symptoms did improve. I would definitely get the breathlessness checked though.
Best wishes
Thank you. I will carry on. I always go half a mg at a time and found further back when I was on a higher dose that it was helpful.
My breathlessness is gone. My husband thinks it is probably because I’ve been very low and slightly scared. And I have to admit I tried splitting my dose and had a really bad day so won’t try that again.
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