Slight Flare?

[Richard170356]

After tapering from 15mg to 8mg since April 2023 I started feeling discomfort at 8mg. I spoke to GP and had further blood tests which were not too bad. She suggested going back to 9mg and would consult rheumatologist for advice on tapering. At 9mg I still felt stiff in the morning so I tried going up to 5mg following advice on here. This worked and after a week I reduced to 10mg. I have been on this for 5 days and still feel discomfort in the morning. Yesterday I had message from rheumotology department saying they would be contacting me for an appointment but this could be over 18 weeks. Any advice on what to do in the meantime would be much appreciated.

[SheffieldJane]

I wonder if changing the time you take Pred would help, maybe to a couple of hours before you get up in the morning? I have done this a few times and it has worked.

[PMRpro Ambassador]

What time are you taking the pred?

The new batch of inflammatory substances is shed in the body about 4-4,30am and start to take their effect then. The longer they are left to their own devices, the more fresh inflammation is created until the pred takes effect. At higher doses that clear it out well, the effect often lasts the 24 hours until the next dose is due. The antiinflammatory effect lasts 12 to 36 hours depending on the person - if you are at the lower end of the range, it is likely you will feel the effects in the morning.

The ideal time to take prednisolone is about 3am (prednisone 2am) which means the pred is in the system before the inflammatory substances are shed so they never get a hold. The returning stiffness then tends to be in bed and less of a problem for most. The other alternative is to split the dose, taking about 2/3 in the morning at a convenient time, maybe with breakfast, and the rest later enough to extend the effect to the next daily morning dose. This may mean that you get away with a low dose - it depends - and it makes for more convenient times! Not all want to get up in the middle of the night - though there are people who do!

I take it you haven't yet seen a rheumy? In the great scheme of things I suppose 18 weeks is probably not bad but no use at all for urgent advice. However, in our experience, most GPs and rheumies are a bit fixated on reduction schemes with no flexibility and that often leads to tears. You will find lots of advice about tapering in the FAQs and there is always someone to answer queries if you post.

[Oh-my in reply to PMRpro]

I realise I should probably have started a new question link here but if, like me, a dose lasts about 12-14 hours so some stiffness returns in the evening, is taking the whole dose at 2am or is splitting the dose the better one to try? Or is it a case of trying both and seeing? I’m worried that if I take the dose at 2am I will have returning stiffness by mid afternoon - or doesn’t it work like that. Does a split dose provide enough relief rather than knocking it fully on the head with a single dose?

[PMRpro Ambassador in reply to Oh-my]

It CAN work like that yes so it is a case of trying what works for you. Sometimes you MAY need a bit more to start with until everything is under control and then you get back to the same dose you were on. But sometimes if you are really good in the morning the stiffness doesn't return in the afternoon because being able to move around helps too. Everyone is different so it is difficult to predict.

[Oh-my in reply to PMRpro]

Thank you. Your advice is always really appreciated. Maybe it’s because I am usually sitting quietly in the evening I stiffen up. My GP did say “keep moving.”

[PMRpro Ambassador in reply to Oh-my]

You only really need to get up and walk to the fridge/the loo/stretch a bit and that will often sort out the stiffness. It isn't keep moving and walk miles ...

The lowering doses by changing the times depends on the person too - maybe you need LESS to deal with it if the antiinflammatory effect is extended to 24 hours and it doesn't get going in the morning. Most people get to a lower dose sooner or later. Does that make sense? I know what I mean!

[Oh-my in reply to PMRpro]

Thank you. It does make sense. I know that sooner or later I’ll have to try something different like the 2am and/or splitting the dose if it helps. I’m not good with any dosage change (no matter how small) or with middle of the night stuff (getting back to sleep) - so it will be an interesting experiment. I’m very open to any suggestions and appreciate how everyone is so different to it will all be very much trial and error. I haven’t managed to match the pathway set out by my GP in the initial appointment. And since then she has pretty well left me to my own devices. I’m so appreciative to have this site for help and advice

[PMRpro Ambassador in reply to Oh-my]

Most approaches doctors use are too fast - they always try it though.

Splitting the dose would probably fit you best - 2/3 or so of the dose at breakfast, the rest maybe at lunchtime or a bit later and that will extend the effect over night.

[Oh-my in reply to PMRpro]

That sounds good. I’ll give it a go. Thank you

[DorsetLady PMRGCAuk volunteer in reply to Oh-my]

As PMRpro has said there isn’t always perfect answer-sometimes need a bit of trial and error. And only try one change at a time for about a week that should be long enough to know if it’s a better option

[Oh-my in reply to DorsetLady]

Thank you for your advice - really appreciated. I am nervous of upsetting the boat so will be very cautious. It was people saying they were able to reach lower doses by both methods had me interested. I’m struggling at the moment to taper at all. I guess it’s a matter of giving it more time

[DorsetLady PMRGCAuk volunteer in reply to Oh-my]

Yes, more time .. and you will get to lower doses, but only when PMR is ready to let you, don’t push things, it rarely ends well😊

[Markandevie]

I have started to take prednisone at 2.30 in the morning after researching and the results have been outstanding. Yes it is inconvenient but cannot stress how much better I am in the morning. Before I had stiffness in shoulders. Neck. Groin and hands as I have Atypical PMR diagnosis so in parts of my body not normally associated. I was diagnosed in Aug and currently on 10mg and reducing quarter a week.

[Sibelius5 in reply to Markandevie]

Do you have to have something to eat to Line your stomach before you take the prednisolone?

[Markandevie in reply to Sibelius5]

I take the pred with a yoghurt and have no issues so far. How is everything going for you, all good I hope.

[sidra1968]

I wasn't really satisfied until I did the split dose..maybe give that a try.

[AyJayBass]

Maybe you have tapered too quickly? This is my recent story:

I had been having problems with flares so in July this year my GP referred me to a Rheumy. I went private due to the prospect of a long wait for an NHS appointment and the possibilty of seeing a duffer. I chose Dr Joel David in Oxford and was with him within 2 weeks.

In my first few months, after a quick step down from 15mg to 12.5 to 10mg, which I reached on 1st April 2021, I tapered to 6mg at the end of September, 6 months later, so a 4mg total taper over 6 months, slower than the standard story of 1mg per month.

Dr David said that was "much too fast". This is what he told me to do: August 8mg every day; September 8,8,7, 8,8,7 etc; October 8,7, 8,7 etc; November 8,7,7, 8,7,7; December 7mg every day and then keep repating this pattern. That works out at a taper of 1mg per 4 months. So far so good.

[PMRpro Ambassador in reply to AyJayBass]

That doesn't fit - or is he talking about the initial taper being too fast? 4mg in 6 months is less than the 1mg per month he is suggesting ...

[AyJayBass in reply to PMRpro]

He said the initial taper in 2021 of 4mg over 6 months was too fast. He is recommending a very slow taper which results in 1 mg every four months.

Thanks for pointing out the typo, I have amended the post now.

[PMRpro Ambassador in reply to AyJayBass]

Ah, the typo is your "That works out at a taper of 1mg per month." in the final line.

I like the sound of this guy!!!

[AyJayBass in reply to PMRpro]

Indeed. I had seen a post from a patient of his a couple of years back when I belonged to a PMR Facebook group and noted his name as I am only an hour away from Oxford. I soon left the FB group becuase there were a lot of crank proposals being pushed by people. One of the moderators kept on posting his theory that a Keto diet would enable a very fast taper off Pred, he was very assertive.

[PMRpro Ambassador in reply to AyJayBass]

A MODERATOR? That isn't a moderator's role ... They are supposed to keep unfounded stuff in line.

[AyJayBass in reply to PMRpro]

Exactly! Hence my exit.