Started tapering with some issues

[Mack100]

Firstly I feel I should correct something I said in my first post. I stated that the GP had increased my initial pred dose from 15mg to 20mg. I don't know where I got this from, the actual increase was to 17.5mg!

After 4/5 weeks on 17.5mg I started my own taper:

Day 1 15mg

Days 2 and 3 17.5mg

Day 4 15mg

Day 5 17.5mg

Day 6 15mg and continue.

Initially I had some pain in both shoulders but also across my upper chest. The chest pain has now almost gone and I'm only getting bad shoulder pain in the morning when the steroid dose is at its lowest concentration in my body.

I have evolved my own coping mechanism, I take my pred at 0800, by 0900 the shoulder pain is starting to diminish but I'm beginning to get an odd steroid "headrush" which is most unpleasant and tiring. By 1000 I'm back in bed and I sleep for 1-2 hours!

I appreciate that I'm very fortunate to be able to do this, my wife still works in the mornings and when she returns I'm up and running around. From that point on I'm virtually symptom free until about 0500 the following morning.

My GP is very switched on and was happy to read the DSNS tapering information on here. I think I'm pretty much going to be able to conduct my own tapering schedule in the future.

I'm doing a lot of reading and trying to get my head round the physiological processes behind PMR. It's quite ironic that as a retired podiatrist/podiatric surgeon my Fellowship thesis 40 years ago was on surgical complications arising from inflammation!

We're off to New York next week to spend Christmas with our daughter and family so I'm working out how to adjust dosage through time zones. Thanks to the information on here I'm getting there although I'm not looking forward to carrying my photography back pack.

I love this forum and look forward to reading it daily.

[PMRpro Ambassador]

All sounds pretty good.

Are you driving or flying and how many time zones?

In changing from mainland Europe to the UK, an hour difference, I just adjust the time I take my pred the hour without any other consideration, it seems to work.

For a few hours difference when travelling east to west, 23 to 24 hours hours after the last dose I take a proportional boost to take me to the local time at the destination . If the time difference is 8 hours for example, I take a third of my current dose extra and then the usual dose at the usual time. Does that make sense?

When travelling west to east I don't adjust anything - I take the normal dose at the normal time at home and then the next day take the normal dose at the normal time locally. Yes, it is a higher dose for that 24 hours but I find it helps with the red-eye effect! That is more difficult - taking less either morning may not be enough to suppress the symptoms and you can't risk that when travelling.

[Mack100 in reply to PMRpro]

Excellent idea about the extra "mini - dose" to bridge the time gap, much easier than waking in the middle of the night.

We're flying to New York from London, there is a 5 hour difference.

[PMRpro Ambassador in reply to Mack100]

So I would take approx a quarter of my usual dose after 23 hours - it is a relatively small time difference and it if were just a couple of days I wouldn't worry too much - the longer, the more important the adjustment.

[Stifffingers in reply to PMRpro]

I was interested to read about time zones etc. Are you saying you take your Pred dose at the same time everyday? I don’t , sometimes in the mornings , sometimes later in the afternoon. Would Thisbe incorrect. ? I understood they should be taken with food , and I very often don’t start eating until midday.

Kind Regards

[PMRpro Ambassador in reply to Stifffingers]

Pred should be taken at the same time every day - its effect is intended to last 24 hours (plus or minus depending on the person) and should be taken as early in the morning as possible to achieve best effect. The new daily batch of inflammatory substances is released in the body about 4am. The ideal time to take pred is 2am, then it is at a peak in the blood in time for optimum inhibition of the inflammatory substances so they never get to cause symptoms in the first place. I use a delayed release form of pred which was developed in response to the study that established that - I never have morning stiffness when I take the pred at 10pm as intended. If for any reason it is delayed more than an hour or so, I can feel the difference next morning.

And if you are on a very low dose, taking pred early in the morning is more likely to trigger than return of adrenal production of cortisol - the lowest level of cortisol is about midnight and that is what signals to the HPA axis (hypothalamus, pituitary, adrenal combo of glands) that they should make some to be produced in the early morning. If it is high at midnight it thinks it doesn;t need any.

[Stifffingers in reply to PMRpro]

Oh Dear. Looks like I’ve been doing this all wrong. (Do you wake up at 2am to take?)

I’ve been doing great tapering down from 15 to my current dosage of 5mg . My December taper. Alas last few days not been feeling great. And today’s a bad day , Arms hurt & groin tight. 🙁

Also feel like I have a cold , although just got rid of one! Worst day for ages.

Should I jump back up to 6 mg? Or more ?

Kind regards

[PMRpro Ambassador in reply to Stifffingers]

No - as I said, it is a delayed release formulation with a special coating that breaks down after 4 hours in the stomach releasing the pred all at once, the same as is does normally. It is designed so you don't have to wake up. I don't have it for that reason, I did fine with ordinary pred taken early morning, but it is the only form of prednisone available here where I live. It is extremely expensive in the USA but some insurances cover it and in the UK you can have it on private presecription but not the NHS.

It sounds as if 5mg is a step too far for now. If 6mg is enough go back - it may work if you don't wait - and otherwise 2 or 3 days at 10mg and then drop back to 6mg would probably do the trick. Give it a month or so before trying again - no xmas, no cold, never a good combo!

[Stifffingers in reply to PMRpro]

Thank you. Think I may have a little bout of Flu. I’ll certainly take another 1mg each day. And then try tapering again ( unless I get to the point of needing that bigger dose)

Will be in the Sunshine over Xmas & New year , so I’m sure warming my old bones will do the trick .

Thank you for your time .

Regards

[Mack100 in reply to PMRpro]

I've only been able to do a little reading on this due to family arrangements but what I have found relates to Cytokine release and RA

ncbi.nlm.nih.gov/pmc/articl...

and I'm assuming that this is relevant to our concerns with PMR and when to dose optimally.

It seems (theoretically) that if I take my normal non-enteric coated prednisolone at say 0200 then I can avoid my early morning pain and stiffness as I'm pre-empting the body shedding these cytokines (and other inflammatories) at 0400-0500.

I may also be able to avoid the steroid weirdness I feel 1-2 hours after dosage which requires me to sleep. I'm not to fussed about waking up at 0200 as I normally can get back to sleep quickly after waking during the night.

[PMRpro Ambassador in reply to Mack100]

Correct - but if the 2am thing is a problem a lot of people manage well by taking their pred immediately before bed. One lady even had her GP suggest that to deal with her steroid weirdness - it worked really well for her.

[Mack100 in reply to PMRpro]

I took the plunge last night by taking my Prednisolone then instead of in the morning but combined it with a divided dose after reading posts on here and some academic articles.

I divided my 17.5mg daily dose into a 7.5mg dose at midnight and the rest at breakfast. The result was positive, I woke up with almost no pain in my troublesome left shoulder and I’ve also realised that my left hip performed perfectly when climbing the stairs. Whether or not I still get my prem weirdness this morning without me having to go to bed remains to be seen.

Out of general interest I saw this article

academic.oup.com/ndt/articl...

Which although it doesn’t reference PMR addresses the steroid hyperglycaemia conundrum in an interesting way that I’d not seen before.

[Mary63]

Looking at your previous post when you in error said you were on 20mg, a lot of replies said GPs would not be likely to prescribe 25mg. Knowing now that your dose was 17.5mg and bearing in mind your weight....no offence....I wonder whether 20mg might be better for you, and might be enough that you would not suffer the morning shoulder symptoms before the pred kicked in?

I know a lot of people have no pain at all when on the right dose. I am one of those lucky ones. And others would be thinking ‘I wish!’ that they were one of those lucky ones.

But because you are not a small creature, might it be possible to ask your GP whether you could try a few days at 20mg just to see? The recommended dose is up to 25mg.

It might make your NY trip easier for you, as you may not be able to have your morning snooze so easily.

I do hope you have a great time.

[Mack100 in reply to Mary63]

Thanks for the reply, after saying that I was pretty good at 15mg I had a rotten day today, possibly because I did a lot of walking yesterday but looking at the past week it's obvious that my inflammation wasn't being fully managed by 15mg. Walking the dog and walking to the polling station, about 1.5 hours in all was a walk too far!

In the light of this I've taken the decision to go back to 17.5mg from tomorrow as I was OK with that and keep this up until the new year. I shall then do a very slow taper with the GP's permission of course.

Thank you for your concern and good wishes.