Next pred step to control pain - your advice please

[Grannyasbo]

Morning wonderful forum folk. I need some wise words and advice please in preparation for my next GP appointment on Tuesday morning:

I am newly diagnosed and I started on 15mg of pred two and a half weeks ago. I take it in the morning with first cuppa with an omeprazole tablet as advised by GP and pharmacist. The effect was not immediate but after a few days my pain score (using a standard numerical pain score method) went from severe (8+) to moderate (5-6) in a few days. Since then my daily pain pattern has been more or less the same with moderate pain (5-6) in the mornings which reduces over the course of the day to mild (2-3) by the time mid evening comes. Have to say I am at my very best mid to late evening and am pain free at night which is lovely. I would dearly love to be pain free all day though and I think this is what I should be aiming for with my pred dose having read all the advice on here. Do the spring clean then work out the lowest level of maintenance needed to keep on even keel (mixing my metaphors there a bit 🤣). And only then start to reduce super slowly

So my question is please, if I am right about the first aim is to get pain free (indicating inflammation free) should I

a. Ask gp to increase pred to 20mg for a 3 week trial

b. Keep on 15mg pred but try the 2.00am dose.

c. Do both of the above or any other ideas you have based on your experiences.

Thank you all in advance and wishing you a lovely sunny Sunday where ever you are.

[MrsNails]

Hi GA

2n half weeks is still very early days, personally l’m not a big fan of the early morning dose (2am) when you are a Newbie which you most certainly are, it’s prescribed in the morning for a specific reason (to mimic your normal production of cortisol) it really does take time to clear the inflammation but it’s not a Miracle ‘Cure All’ unfortunately - it certainly makes a big difference & does in fact feel like a Miracle compared to where you’ve been.....

When l was diagnosed (back in the day) 15mg was the Standard Starting Dose but that has now changed to up to 20mg - personally l would report to your GP as you have to us & ask him what he suggests then you can ask about increasing to 20mg but personally l wouldn’t consider the 2am dose (yet) it means setting an alarm & disturbing your sleep, which can then impact upon you further.

What time do you wake? You can start by taking your Pred as soon as you wake with an earlier cuppa.

Are you on Plain (White) Pred or Enteric Coated (Red 5mg Tablets) as that can also have an effect on how soon the Pred ‘Kicks In’.

Kind Regards

MrsN

[Grannyasbo in reply to MrsNails]

Thanks Mrs N. Really helpful reply as usual. I wake about 7.30/8.00 and usually take pred and omeprazole around 8.15 / 8.30am. I am on the white uncoated Pred.

[MrsNails in reply to Grannyasbo]

You could consider taking them that bit earlier, just after you wake, take a bottle of water up with you to bed at night. See what your GP’s advice is - not all GP’s will prescribe E/C Pred as Jane suggests; you are very much at the beginning of your journey & in my personal opinion it is not yet time to consider trialing different options....

Let us know what your GP thinks

MrsN

[SheffieldJane]

You might want to discuss gastric resistant Pred. After much trial and error eventually I found that taking these at bedtime gave me a good morning without Omeprazole. I have to say that in the beginning I needed (normal Pred, )20 mgs to clear out the inflammation and I took it for 6 weeks before beginning a taper. The relief from pain and stiffness was total.

[Grannyasbo in reply to SheffieldJane]

Thank you very much SheffieldJane. I will discuss the gastric resistant pred with gp though taking on board what others have said on this forum there are issues with absorption rate and how individuals. If you have any advice on this that would be great. I am keen to take as few meds as possible so if I could not have omeprazole I would like it but am cautious as still trying to get inflammation down. It’s such a difficult journey isn’t it. So glad to have this forum. And thanks again for your advice.

[PMRpro Ambassador in reply to Grannyasbo]

The only real difference is that it takes longer and doesn't make a high spike in an hour or so. You are titrating the dose anyway, that accounts for the other reservations which really only apply for patients needing a short course for an acute condition. Also, because it is absorbed over a longer time, the antiinflammatory effect also may last longer which is particularly good for anyone where it doesn't usually last for the full 24 hours.

[Grannyasbo in reply to PMRpro]

That’s good to know. Just said to piglette that it’s soooo helpful having my PMR posse in the background full of wisdom and experience giving me confidence that I can have an informed discussion with my gp. I will take all advice and thoughts and integrate them into my gp discussion plan. Wish me luck. I’ll let you know how it goes.

[PMRpro Ambassador]

Either is a reasonable idea - it will then depend on whether your GP is up for trying 20mg. Lots of people set an alarm to wake early and take the pred a couple of hours before actually getting up, settling down for another couple of hours to let it work. Of course, the earlier you take it, the less inflammation is set in and the less work there is to do.

[Grannyasbo in reply to PMRpro]

That’s a good idea thank you v much. I am still basically a teenager when it comes to mornings I hate them and always want to sleep in despite being 63. But to be pain free I would do a lot.

[PMRpro Ambassador in reply to Grannyasbo]

I don't get up until 9am - but have been awake, with tea from 7am and TV news and a book ... Occasionally I go back to sleep but nt often and not or long.

[Grannyasbo in reply to PMRpro]

Yes I think an early partial rise is a good idea. I don’t want to change too much at once as feel I need to see impact of each change I make so I can tell which is working and which aren’t. So am thinking I’ll make a new schedule after gp discussion. But feels like an earlier meds time may help.

[piglette]

As the others say try and get your GP to do a trial of 20mg, you can of course change your timings too to see if that helps. You should get at least 70% pain relief. Unfortunately a lot of us are never truly pain free, oh that we were!! I have the coated variety of pred which is great as it does mean you do not need a PPI such as omeprazole. Has you GP suggested a Dexascan? Everyone with PMR should have a check of their bones as steroids can affect them. Also you should be prescribed vitamin D with calcium for the same reason.

[Grannyasbo in reply to piglette]

Hi piglette. Thanks for your advice. Think I need to keep my gp on board. She has been pretty good so far. So will test the water with her on options. The advice from you and others is sooooo helpful as it makes me feel more informed and confident to have a discussion with her rather than just following her advice without considering other options. Can’t tell you how much this helps.

[piglette in reply to Grannyasbo]

Of course you should get things agreed with your GP, I thought I had said that?? Do check with her on the Dexascan and vit d with calcium though, they should be on prescription.

[Grannyasbo in reply to piglette]

You did and I will. 👍😃Will do also on bone scan and vit d/ calcium. I dont think she will give me prescription for latter though so have bought my own. But I will ask.

[piglette in reply to Grannyasbo]

Good idea. If you are over 60 you can get the prescription free of course. Vitamin D with calcium is recommended in the guidelines so she should agree to give them to you. academic.oup.com/rheumatolo... See note 6.

[Pixix in reply to Grannyasbo]

I’ve had calcium and vit d on prescription for 18 months now, I’m same age as you! Dr should prescribe it!