Some gain!

[Griggser]

So I decided to split the way I take my preds, I found that on the current dose of 15mg morning were still difficult. I now take 10mg in the morning, after breakfast and 5mg with a snack before going to bed. Now I'm not sure if it's this or the leflunomide kicking in but I am certainly a lot better in the mornings and pretty constant all day. The only thing I have a problem with this new regime is sleep is pretty poor! I'm thinking now should I delay the night time dose until say 4am and wake up, eat a snack take the 5 or 10mg then and follow this with the remained at 8am when I have my breakfast? Any way I definitely feel better and I think not working has significantly helped. Hopefully I can start reducing again soon 😄

[PMRpro Ambassador]

"I think not working has significantly helped" - I think that is certain!

I think I'd take the bigger amount at 4am or so (2 hours before you want to get out of bed) and adjust the rest to allow you comfort in the evening - though once you get going and moving the stiffness usually improves incrementally through the day.

Good to hear though - hope it continues with a good reduction as well!

[CJ-pmr15]

I struggle in the mornings and only really get rid of the stiffness in the late afternoon and evenings. I've been thinking of trying to split the dose of pred so found your post really useful. I haven't been bothered too much with sleep disturbances so far so I will definitely give it a go.

Thanks

[Slowdown]

Hi Griggser, just to add to the suggestions.. I take 5mg at breakfast and 3mg around 2p.m., seems to work for me and I get a good night's sleep.

I live in Cornwall, too, and my main frustration is not getting anything 'extra' such as a dexa scan or Vit D blood test without paying for it (£233 for a scan) however much I persist with my GP, we are down to letter contact! I've just run out of energy for the moment to keep insisting, but will not give up !

Good luck with a method of taking pred that works for you, and hope you enjoy a happy Christmas!

[Dobermanlover in reply to Slowdown]

Hi Slowdown - I also live in Cornwall, can't get a scan, etc., told it was a waste of time! Must see the same doctor/rheumy!!!!!

[Slowdown in reply to Dobermanlover]

I think the issues are money-led here in Cornwall - I see that there are private dexa scans for around £60 in other parts of the UK. My doctor (who diagnosed PMR immediately, bless her!) is sticking to guidelines: 'a bone density assessment is not appropriate to MONITOR (my caps) treatment..' I was not offered it on diagnosis and having read this forum decided I would like a baseline scan, albeit 3 months into treatment. I phoned Treliske (no doubt you are familiar with this hospital!) and there is no waiting time even for an NHS funded scan. My GP also stated she 'calculated my risk of an osteoporotic fracture.. as low risk, which means you should be offered lifestyle advice but not a dexa scan or treatment.' Her calculation was based, presumably, on the 2-minute hands-on examination....

[PMRpro Ambassador in reply to Slowdown]

You are at risk as a patient on longterm corticosteroids - bet that is covered in the guidelines too if you look hard enough. As soon as you add pred into the calculation you become at a significantly higher risk.

For under 60s, the BSR guidelines state calcium and vitD supplements should be given immediately and a dexascan should be done early in the steroid treatment to get a baseline - if appropriate on the basis of the readings, other bone protection considered:

"Other individuals should have an adequate intake

of calcium and vitamin D (Grade C). We recommend

co-prescription of calcium and vitamin D supplements

when starting corticosteroid therapy. Measurement of

BMD to assess fracture risk is recommended in these

individuals as well. A bone-sparing agent may be

indicated if T-score is 1.5 or lower."

The whole guidelines are here

pmr-gca-northeast.org.uk/as...

However - the age 60 bit I think is a bit out of date - many people in the 60s/70s/even 80s have perfectly good bone density while under 60s can have low BMD. You can't see, a dexascan is the only way to know the order of magnitude.

[Slowdown in reply to PMRpro]

Seem to have hi-jacked Griggser's thread here (sorry!) Thanks so much PMRpro for being such a mine of information, I will read the guidelines with an eagle eye.

[PMRpro Ambassador in reply to Slowdown]

At that price it's worth a few days away to go to Southampton or Bristol where you can get a dexascan for £55 or £75!

gpcare.org.uk/site/privatep...

uhs.nhs.uk/OurServices/Musc...

[Slowdown in reply to PMRpro]

thanks for that! Just replied above ... Bristol it is (after another go at doc! but nicely

[Charlie1boy]

Hi Griggster!

When I was on 9mg at the beginning of November, I started taking 4mg in the morning and 5mg at about 10pm. This has worked really well for me, and I have just reduced without problems to 4.5 in the evenings so 8.5 mg overall.

All this is after spending nearly 6 months at the 10/9mg level. I feel things are moving along well just now,but am not counting my chickens yet! No further tapering now till the New Year!

Good luck.

[Polylinc]

Hi everyone X

Just been reading about the different ways that you split Pred doses but ...

What I am unable to comprehend is the size of doses being taken ???

The medication I get, comes in 5mg tablets (I'm currently on 15mg) and can therefore only split into 5, 10, 15 mg.

I can also visualise cutting them in half achieving multiples of 2.5mg but ...

Charlie 1boy, how do you achieve 9mg and 4.5mg ???

As a matter of interest ...

I found that taking mine in the morning as GP advised, I could not function very well at all until around noon.

I decided to try them instead after a small bowl of porridge, before retiring to bed at around 10.30pm. Now when I wake in the mornings I appear to function pretty well.

I may play around with splitting doses too, if things change, so thanks for that folks x

[Slowdown in reply to Polylinc]

they also come in 1 mg. tablets, very useful!

[PMRpro Ambassador in reply to Polylinc]

Prednisolone is also available in the UK as 1mg tablets - essential for reducing the dose from 15mg since 5mg at a time is NOT suitable in PMR even if it is standard for other uses of pred in inflammation. In PMR any reduction should be not more than 10% of the current dose.

One lady was told by her GP that it only came in 5mg tablets, he got quite nasty about it. She mislaid her tablets while away from home but was able to get an emergency supply from a pharmacy on production of her blue steroid card - she asked them to give the emergency supply in the form of 1mg tablets and took the packet to the GP as proof. Couldn't argue could he? There are also 2.5mg enteric coated pills (brown, 5mg are red) but they MUST NOT BE CUT.

When you take your pred in the morning it is helpful to take it as early as you can manage - it takes 2 hours to be absorbed and reach its peak in the blood and act. Waiting until 8am means the new lot of inflammatory substances have got a good hold (they are shed in the body at about 4.30am). Quite a few patients wake early, take their tablets with a sandwich,yoghurt or glass of milk they took to bed with them and settle down for another couple of hours to allow the pred to start to work.

[Polylinc]

Many thanks Slowdown and PMRpro X

I'm learning all the time 😊

[CJ-pmr15]

I'm in the UK and also get 2.5 mg uncoated tablets so i have 5 mg 2.5 mg and 1 mg. Perfect for tapering even by 0.5 mg without needing to cut any.

[Polylinc]

Hello again ...

Seen my GP again today and after some discussion she agreed to keep me on 15mg each day until after Christmas when I am to try a week at 12.5mg before my next appointment with her and further discussion.

I now have repeat prescriptions in place for both 5mg Pred and also for 2.5mg and a supply of each too.

However, Having read posts on here, I am guessing that maybe I will need a supply and repeat prescriptions for 1mg too, in order that I can have more control over my gradual proposed decrease.

Something I would like to ask ... Has anyone else been prescribed Adcal-D3 chewable calcium carbonate + vitamin D (twice a day) along with ... Aledronic Acid 70mg tablets (once a week) too ?

I wish everyone a peaceful and pain free Christmas and may we all feel a little improvement in the new year X