I have just read Mrs Nails post about dose splitting. I was at the Reumy yesterday. He could not have cared less about how I was feeling only that my blood counts were good. I am now at 6Mg and was taking 3mg in morning and 3 mg in evening. Last night I tried 4mg am and 2 mg hs. Do not feel much different today. He was very adamant I am to reduce 1mg monthly not 1/2mg. And to take off the night dose.He also said prednisone does not mask symptoms but clears inflammation. It really was a waste of my time as I am reducing the slow way. I still have stiffness in the mornings but maybe that is what it will be. I am capable of going to an exercise class twice weekly so just push on. I was on holiday last week at a cottage and had hardly any PMR symptoms while there only stiffness when riding in the car for long periods of time. I have no idea if my adrenals have started to kick in but will soon be reducing to 5mg. I would so love to be able to take just one tab am so may work on trying to get rid of night dose.
Splitting Dose: I have just read Mrs Nails post... - PMRGCAuk
Splitting Dose
Hi Robinsnest
It was not us ‘Long Timers’ l was concerned about but New Members who still have intact Adrenal Function & must comply with their Doctors Instructions as it very important, as sometimes the Doctors are trialling the Pred to Prove it is infact PMR - this is how l started my Pred Journey.
When you split the dose it is harder to decide where to start reducing because you don’t want to do it at both ends.
Someone who has had experience of a Split Dose Taper May be able to advise but ultimately you need to be taking all your dose in a morning to try to encourage the Adrenal Glands to wake up & it’s normal to have our highest dose of Cortisol around 9am.
Wishing you luck with your taper & you can’t rush it just because your Consultant said so, when are you scheduled to see him again, did he give you your Blood Tests Results ie CRP/ESR Levels?
I get stiffness riding in the car, long arms & legs are not always an advantage 😉
You are doing well to be able to go to your exercise class & that’s a good guide as to how you are doing when reducing.
Hopefully someone who’s on a similar regime to you will advise how they managed to reduce.
Kind Regards
MrsN
I will go for blood tests next week and I get the results sent to me. I will therefore reduce to 5mg if the readings are good. I am going to work towards taking it all in the mornings but do not want to do it all at once.
Oh No you must take it slowly, my Wonderful Rheumatologist who sadly died always advocated going down by 0.5mg from 10mg because otherwise it is a large percentage drop.
One option you may want to try is to start reducing in the evening first & leaving your morning dose alone.
Maybe consider changing the title of your Post to something like
‘Any Tips for Reducing When On A Split Dose of Prednisoline?’ as you may get more replies.
If your not sure how to edit, l can do it for you.
Kind Regards
MrsN
Thanks for the sound advice. I am closely watching blood levels before doing anything.
Hi I split dose as it was better for me, I reduce my night dose and as I am under ten mg I reduce by half mg.
When I had to increase because of a flare I made sure I took more on a morning,I might be wrong but I think the ratio is 2-1, which I think if you were taking 15mg you would take 10mg morning and 5at night I am sure one of the ladies maybe PMRpro did say this, I am sure someone will correct me if I am wrong.
Hope this makes sense to you
I was put on split dose at 50 and reducing Rheumy wants me to stop splitting at 30 but this may not help you. Good luck.
And always remember it's symptoms which count. Your readings may be perfect because that's what pred is supposed to accomplish. Taper only when your symptoms remain under control.
Hi,
Sometimes we do suggest splitting if dose doesn’t seem to be lasting 24hours, but, as Mrs Nails says it shouldn’t be split initially - you need to take the Pred as directed by doctor, or failing that, as per the instruction leaflet - which for most states with or after morning meal.
Can I ask why you split yours and at what dose.
Your Rheumy is correct in that the Pred only controls the inflammation, but it’s the effect of the inflammation that makes your limbs ache! He’s right in that does not affect the PMR itself - just the inflammation - which then manifests as your “symptoms” - So he’s partially right! But he seems to be another that only looks at the blood markers - and that’s not so good!
He may be grumpy because YOU decided to amend your regime - which is another reason why we say - check with your doctor that he’s happy for you to do your own thing. Some are, some aren’t - but he’s supposed to be the expert and signs your prescription -so best to keep him on side!
I do however disagree with him over the monthly reductions - 0.5mg is much better - for your PMR and to help nudge your adrenals in working again.
I note that you have only been diagnosed a year, so just be aware your PMR may have a lot longer to run - I guess he’s probably another one of the “it only lasts two years brigade”
If you don’t have any specific problems with your PMR you might be better being treated by your GP - if you have a better relationship with him/her. They would then be aware of your family issues, which obviously the Rheumy isn’t.
He is really not difficult to get along with but seems to find it an inconvenience to answer any questions. I swear the gentleman in front of me did not even get a chance to sit in the chair. He must make a fortune in one day as the appointments are only minutes. . That is how fast the appointments are. I am going to try to get to 5mg and then am going by halves to his dismay.
To get to 5mg in the morning - you could try following -if you can cut tablets -
4 & 2 for 1 week
4.5 & 1.5 for a week
5 & 1 for a week
5 & 0.5 for 2 weeks (or longer if necessary)
If at any time you have a wobble - just repeat for another week.
Then just morning - 5mg
Stay at 5mg for at least 4 weeks - then 0.5mg a month as you say.
You are at such low doses that’s there really is no need to rush.
Thanks so much. That is exactly what I will do.
Good- let me know how it goes!
Reading this makes me feel so much better-I flared at 4.5 mg and had to go back to 6mg-PMR since May 2018-so 6mg is considered a low dose?
To me it is! But then I did start at 80mg 😳
Anything below the physiological dose (approx 7.5mg) to me is low. Some doctors may disagree though.
i am about to start my fourth week of 10mg, instead of reducing by weekly 1mg, and am feeling well. Now that my next reduction will take me under 10mg would it be reasonable to take 9.5mg daily for the next four weeks? I will be seeing my GP on 2 Sept and want to discuss a much slower reduction than she had in mind, namely 0.5mg monthly, instead of 1mg. weekly! Thank you, DL, for advising me to stick with 10mg. for a month - I am very glad I did!
Some do start with 0,5mg reductions once they go below 10mg. I found I was ok until I got to 7mg going in 1mg tapers - but then swopped to 0.5mg.
I think it really depends how your tapering has gone so far, if you feel it’s a bit rocky then 0.5mg is very sensible.
If your GP queries your approach, this is an extract from the official guideline regarding tapering -
“The suggested regimen is -
. Then 10mg for 4–6 weeks
. Then reduction by 1 mg every 4–8 weeks
However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.”
Good luck.
Thank you.
If you take your whole dose as near as possible to 2am-3am and then go back to sleep. then you wake up a warm shower.
Your adrenal glands, when working, make enough cortisol to see you through the next 24 hours, unless you encounter 'fight of flight' when they immediately kick in to give you more. That is why it is essential that you pace yourself, because you do not have that 'kick' in ability until they begin to wake up and that normally starts at 7.5mg and below and can take up to one year before they are fully functional. That is why you have to carry your Blue Steroid warning card for one year after you stop taking pred.
I do not have such a thing as a steroid card. Live in Canada
This is why it's a good idea to get a medical alert bracelet. Universal medical id better than medicalert, no repeating fees, and your lifetime health conditions info online which can be accessed by a first responder through a pin on the bracelet.
You can download one - see link -
Same problem in New Zealand. I ordered one online from Butler & Grace. They make a variety of coloured silicone bangles that are engraved with your info. They are soft spoken don’t cause bruises like the metal ones can.
butlerandgrace.co/collectio...
I now have two - quite stylish looking.
Oops - soft silicon!
You can amend a post - click on More to be able to edit.
I would reduce by .5mg, down to 5.5, instead of 1mg.
Why do so many of them plainly misunderstand how it works in PMR? As long as the underlying cause of the PMR symptoms is active there will be inflammation being created - which will either manifest as symptoms if there is no pred or not if you aren't on pred. It doesn't CURE anything - so in a sense it does mask the symptoms. Semantics ...
You could switch from split to all at once slowly - Img at a time, I wouldn't try it all at once. If it works that's fine, if it doesn't I don't think it will make that much difference in relation to adrenal function if you are only taking 1 or 2mg at night. Normal adrenal function would include a boost of cortisol in the mid-late afternoon. If taking the small bit of dose is early evening then it shouldn't make any difference.
I split my dose till I reduced to 6mg, I am currently experimenting to find the best time time take them as I have not felt well since. 3am seems to work best. Any exercise, eg gardening, walking, leaves my muscles sore and achy. I still do it though as I have to, tbh I could just spend the whole day in bed!!! Year and a half on and really fed up with the whole kit and kiboodle.
I wan on a split dose from the onset of my PMR in September 2017. I started on 20 mg -10 in the evening and 10 in the morning as my symptoms were worse at night and once a day morning dose did not work through the night. My Reumi suggested I reduce the preds by 1 mg alternating evenings and mornings. One month I reduced evening dose and next month morning dose. When I was below 10 mg I started 0.5 mg reduction every 4-5 weeks. Now I am on 5.5 mg total: 3 mg in the evening and 2.5 in the morning. Next time I will reduce by 0.5 mg my evening dose. My Reumi thinks that it is ok as long as my tests are good and I have no symptoms. He never insisted on taking all the dose in the morning. And he thinks that this will not influence adrenal glands function as they react only to the total dose of pred/day, not how it was split.
Thank you for this info. I have been reducing to get to 6mg by 1 mg doses. From now on it will be .5mg. This is not my Reumy instructions but I do not want issues.I am presently taking 4mg in the morning and 2 mg in the evening. Still achey in mornings but always was.Will stay on this dose for a month.
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