Switching from partial enteric coated: I had PMR... - PMRGCAuk

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Switching from partial enteric coated

Myosotis profile image
19 Replies

I had PMR and GCA 2 years ago, but have had no symptoms since then. I reduced my pred down from 40mg to 6.5mg where I got stuck for a year, partly I think due to having a lot of stress in my life. My consultant is now happy for me to reduce the pred further and I've been using the DSNS method to get to 6mg over about 3 weeks, with only a few days when I had a bit of a headache and otherwise fine. However, I've been taking the pred as a 2.5mg enteric coated tablet plus 4 (now 3.5) x 1mg uncoated tablets. I never realised that you should take the enteric coated ones in the evening, so was taking the whole lot in the morning. Now I'd really like to switch to entirely non-enteric coated (because I'll have to do that below 2.5mg anyway), but am wondering if this could cause problems with the dose not being spread through the day. Should I start by splitting the dose morning and evening and gradually shifting to taking all in the morning, or should this not be a problem? I'd be very grateful for any advice thanks.

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Myosotis profile image
Myosotis
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19 Replies
venezia1 profile image
venezia1

Just letting you know that you can now get enteric-coated 1mg pred - the uncoated ones upset my stomach so I was pleased to find out the coated ones were introduced recently.

Myosotis profile image
Myosotis in reply tovenezia1

Thanks! That's very useful to know, but I'm in the UK. Are you?

venezia1 profile image
venezia1 in reply toMyosotis

Yes - north west of England.

in reply tovenezia1

I am interested to know how you are able to get the enteric-coated Pred as I have the same problem with my stomach. Here (I'm in Manchester) the Dr is not allowed to prescribe them even if I pay for them, we are appealing against the decision but it will take about 3 months. I am thinking of buying empty enteric-coated capsules and filling them with my tablets (got this tip from someone on this site)...but what a crashing bore!!!

venezia1 profile image
venezia1 in reply to

Good Lord- why on earth isn't he allowed to prescribe them? I simply told my GP that I'd seen a story in the paper about it, and tgenvtold my pharmacist, who also hadn't heard of them, and got them added to my prescription!

Is the decision not to prescribe coming from the commissioners at your surgery? If so they need a big nudge!

in reply tovenezia1

This directive is from the Clinical Commissioning Group for greater manchester, it is just stupid but they say "rules are rules". My Dr is fighting my corner but it will take time. Meanwhile my tummy is very uncomfortable and I cannot eat much so am losing weight!! They do 1mg, 2 1/2mg and 5 mg, enteric coated now so are pretty flexible..IF ONLY YOU CAN GET THEM.!!

venezia1 profile image
venezia1 in reply to

I think that's outrageous! Rules are rules indeed - in my book they are there to be broken, but even so they should be having the patient's best interests at heart. I wonder if it's a money issue? Wouldn't be surprised.

in reply tovenezia1

"rules are there to be broken", I couldn't agree more. As for cost, PMRPRO did a break down of the comparative costs and there is not much difference, espcially when you take into account all the other medication needed to protect the stomach. I have been brandishing these figures whenever I am told it is a matter of cost....thanks to PMRPRO for providing this ammo/info.

venezia1 profile image
venezia1 in reply to

Yes, good idea. I was relieved to stop taking Lanzoprazole, for instance.

maria40 profile image
maria40 in reply tovenezia1

Yes, the same for me and I'm in West Sussex. Incidentally, I take all mine in the morning; at the moment: 1 x 5mg, 1 x 2.5mg and 2 x 1 mg all enteric coated and I have no stomach problems any more.

piglette profile image
piglette in reply to

Hi manjan,

That is awful, I wonder how many more things will be blocked from us in the future. I think I would keep fighting as I would be so annoyed. Goodness knows why you cannot get them privately if a doctor wrote a private prescription. Bureaucracy gone mad.

PMRpro profile image
PMRproAmbassador in reply to

Your GP is talking bunkum - he can write a private prescription for them if you are willing to pay for them. What he can't do is write a private prescription for an existing NHS patient and charge the patient for doing so. It's on the NHS site (unless they've changed it in the last few weeks).

But when the patient is willing to pay the cost of the medication - it is nothing to do with the CCG.

jinasc profile image
jinasc

Your wrote, I never realised that you should take the enteric coated ones in the evening, so was taking the whole lot in the morning.

The way to take them is the whole lot in the morning. unless you are on slow release.

I am aware that some people split the dose.

You cannot cut enteric coated tablets, they are designed to work in a different place to your stomach. Non coated dissolve in your stomach - so if you have problems then take them with Yoghurt and then no problem at all.

A retired Pharmacist I am friends with, puts his in his porridge every morning. Would not have done for me, as when I woke up, whatever time it was, a cup of tea and a slice of bread (which I had wrapped in foil) and the hot water was in a flask - drink, eat, swallow pred, then snuggle down for an hour to give them time to work.

Baileyw06 profile image
Baileyw06

I started splitting my dose but found out it worked better all together in the morning.Also ,stopped taking my calcium with it in the morning and it worked much better .

PMRpro profile image
PMRproAmbassador

First of all, I wouldn't worry about having mixed them, it won't have made much difference really - the ordinary take about 2 hours to reach their peak, the enteric coated anything from 4 to 6 hours depending on the person. And actually - there is nothing OFFICIAL about taking enteric coated in the evening but for some people they do work well to avoid morning stiffness. The sort you must take in the evening (called Lodotra) are a totally different sort and only available privately in the UK.

As for changing to the ordinary - just try taking them all in the morning and see how it goes. If it doesn't work you can experiment a bit.

Myosotis profile image
Myosotis

Many thanks to everyone who replied to my post. It has been more than helpful and it's surprising to me how much I didn't know about pred. I'm now thinking it might be best to go the other way and err on the side of going towards the enteric coated tablets. I already have stomach problems and I'm taking omeprazole so that might be a good idea, especially if I can get the 1mg enteric coated tablets. I asked my pharmacist yesterday and he didn't know they existed, but he looked them up and found that he could get them if I can get a prescription. He said I might have a problem with that because they weren't listed as an approved prescription medicine. I'll ask my doctor when I see her next Tuesday.

Whatever the outcome, I shall now be a lot less worried about switching between the enteric coated and uncoated tablets.

Myosotis profile image
Myosotis in reply toMyosotis

Further to my previous post, I saw my doctor (in Glasgow) this morning and she had no problem giving me a prescription for 1mg gastro-resistant pred. Thanks particularly to venezia1 for telling me about these.

Rose1bud profile image
Rose1bud

My rhue informed me the best time to take the pred is morning and they should not be split as they loose

PMRpro profile image
PMRproAmbassador in reply toRose1bud

It is only in GCA that splitting the dose is not always a good idea but to be honest - where a patient is at the low end of the antiinflammatory duration then even for GCA there would seem to be a role for splitting. The effect lasts from 12 to 36 hours, depending on the person. If you are at the 12-hour end then splitting to dose to suppress symptoms for the entire 24 hours seems sensible. If you have symptoms it is because the inflammation is not being managed - a far more useful monitor of whether you are taking enough pred than blood markers or anything else.

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