Why do I have crazy symptoms at night?

[Pangolin43]

Hello everyone,

I’m currently taking 10mg of enteric coated Pred which I take before bed 10:30pm. Around this time I do also get a ‘niggling’ of symptoms. This was working well in terms of sleep. However I have recently been awake and in lots of PMR like pain from around 2pm particularly in my hands (which feel hot) and arms. Is this the inflammation at work or something-else. Is this normal? I’m ok once I’m up at around 7am. I reduced from 12.5mg around a month ago and Rheumatologist wants me to stay at 10mg for the next month. Any ideas?

Thank you 😀

[PMRpro Ambassador]

My suspicion would be that while 12.5mg was plenty, 10mg is marginally too low to contain the daily dollop of inflammation and the underlying build up of residual inflammation has got to the stage where you can feel it towards the end of the 24 hours before the next dose is due. Reducing in 2.5mg steps is a lot - top experts recommend not more than 10% of the current dose when tapering/titrating the dose. It is more difficult with e/c pred but it is available in 1mg doses too if you can't tolerate plain pred at all. OTOH, if you can tolerate some plain pred, you could try taking 1 or 2mg plain on top of the e/c pred which would kick in before 2am and stop that pain and then trying reducing 1/2mg at a time.

[Pangolin43 in reply to PMRpro]

Thank you for your speedy response. I have got some 1mg EC Pred. I considered adding one to 10mg and upping my daily dose to 11mg. What are your thoughts?

I think the only reason I haven’t is because I’ve got an appointment on 10th June and was told not to do this without consulting Rheumatologist.

It seems daft if I can help myself.

[PMRpro Ambassador in reply to Pangolin43]

One positive is that you could find out if that is the reason before the appointment. I never understand why they are in such a hurry and even more why they don't provide a get-out when it does go pear-shaped between visits - because it does more often than they think.

[Pangolin43 in reply to PMRpro]

Your response makes sense. Thank you. Do you think 1mg EC is too much to reduce back from?

[PMRpro Ambassador in reply to Pangolin43]

Lots of people do it - I do. But on the forum we have slowed tapering approaches that make it easier.

[Pangolin43 in reply to PMRpro]

Yes. I’ll familiarise myself with these ... thanks again.

[Rymer in reply to PMRpro]

What is plain pred and e/c pred - still learning the lingo

[PMRpro Ambassador in reply to Rymer]

In the UK only prednisolone can be obtained as plain, usually white, uncoated tablets and also as an enteric coated version which is resistent to stomach acid and causes fewer gastric problems without using stomach protection drugs like omeprazole. The e/c version are 5mg red, 2.5mg brown and 1mg yellow in colour.

[Rymer in reply to PMRpro]

Great - thanks. Maybe a silly question but if Pred is known to likely affect our stomachs (hence the second preventative medicine) why is plain Pred prescribed at all and not E/C Pred which could presumably be made in any dosage. Thanks again for you excellent and sympathetic info you take time to provide us all less informed with.

[MrsNails in reply to Rymer]

I’ll jump in - the usual reason is cost 😉 however, plain Pred works more quickly ie about an hour & E/C about four hours, so the thinking behind it is if you take it in the morning it mirrors our natural production of Cortisol which is at its highest level at around 9am

I’ll add a link to FAQ which you may find helpful.

healthunlocked.com/pmrgcauk...

Kind Regards

MrsN

[Rymer in reply to MrsNails]

Thanks very much. My symptoms have always been from late afternoon through the evening and night so I take my Pred at 7.00ish. I have the E/C Pred so as I start to reduce, if it takes 4 hours maybe I will take it a little earlier.

[MrsNails in reply to Rymer]

7am (ish) is a good time, just take it as soon as you wake, it may help & Doctors usually recommend that’s how you take it, you’ll read about others on here tweaking their doses/times as they’ve had PMR a long time & they’ve discovered through trial & error what works for them. I’ve tried splitting the dose Night & Morning but it doesn’t work for me plus l tend to go to bed at random times so l may forget to take it.....

[Rymer in reply to MrsNails]

Sorry - I meant I take it at 7 pm ish or with dinner (but you are right as dinner time is varied I have set an alarm to remind myself to take it). But good to know I can tweak it if/when things change and also have the good guidance of you all. It’s only early days for me yet so Polly, as I now unaffectionately call it, will no doubt find me reaching out with each twitch and turn. Thanks

[MrsNails in reply to Rymer]

There’s some good info on Tapering Plans in FAQ - l’ll attach you the link -

[MrsNails in reply to Rymer]

healthunlocked.com/pmrgcauk...

[Shiba64 in reply to Rymer]

I had to note you call PMR 'Polly' so wanted to share my names for it.Polly was first one. Then I had 'Polyalgia' for when it was OK and 'Polyagro' when it was not OK.

And then 'Agieagro' was my latest 🤣🤣

[Rymer in reply to Shiba64]

Yes they do seem far more suitable than Polly so I may rename it. Thanks.

[madhouse1 in reply to Shiba64]

🤣

[PMRpro Ambassador in reply to Rymer]

e/c pred is only available in the UK anyway so the vast majority of the world doesn't have the option. There is a fair bit of dispute about it - some claim it isn't as effective, isn't absorbed as well or reliably. Until a few years ago it was also much more expensive than the plain sort although that imbalance has changed in recent years as the price of plain pred was increased by the manufacturers. and also when you take the cost of 2 drugs being dispensed rather than just one.For most patients it probably doesn't matter - short courses of pred together with a few days of omeprazole isn't a big deal. But for patients like us taking pred long term, there is a benefit if you can just take pred and not long term PPIs as well (the drug group omeprazole belongs to) since PPIs can also lead to osteoporosis when used for years as well as having their own side effects.

[Rymer in reply to PMRpro]

Thanks again.