A useful option-gastro resistant empty capsules

[Freshairfiend]

a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can take them without food around midnight. But I have also taken them at 11pm ish and not noticed any difference. I asked a gp if I should still take omneprazone and she said yes. I spoke to another gp last week and she wasn’t sure and said she’d look into it. Others here with medical training might have an idea.

I got the idea from two people in North America who posted on the forum that they were doing this and buying the capsules from a company in Florida, who now has a a Uk base. So you can buy them from here:

capsuline.co.uk/products/ca...

They are vegetarian and acid resistant (hence no food necessary) as well as enteric coated. I think I read that time delay to dissolving was 2-2.5 hours. I have been meaning to test this out, by putting one in some liquid at the same temperature as the stomach, but haven’t got round to it. You can get three sizes, size 00 being the largest. I have now used the size 0 capsules with 14 mg, using 2x5mg and 4x1mg. I can get them in easily and prepare a weeks lot of meds on a Sunday and put them in my daily organiser. So much easier for me than organising around an inconvenient time, and with food.

they are nearly £25 for 1000, plus £5 delivery, but worth every penny for me. I think there’s an offer on at present, which saves £5.

Be warned, their customer service is non existent for the Uk- I asked for a phone call about delivery over Xmas to west wales, where I was on holiday and didn’t get one! I emailed and didn’t get a reply. The package arrived promptly to my home, thru a courier within 4 days, including New Year’s Day, I requested a safe space, as I was away, but it was lying on my mat when I got home, having been put through the letter box!

there was an online chat option, open during US hours, but I didn’t try that, as they are undoubtedly geared up for US customers.

There are other gastro resistant empty capsules advertised for sale on eBay and Am***n, but they are just capsules in a clear plastic bag, so I don’t trust that. The capsuline ones have a listed ingredient of Hypromellose Phthalate, which is the enteric coating (lots about it on t internet).

Also, be aware that the Dr T and T ones only have a delay of about thirty minutes.

[PMRpro Ambassador]

If they only have a 30 min delay - I would really question that they are acid-resistant!!! The idea of enteric coating/gastric acid resistance is that they are not broken down in the stomach AT ALL but transit along with the rest of the stomach contents and start to be broken down in the lower regions of the GI tract, starting with the duodenum where the pH is much less acid. Because the environment is less acid, there is likely to be less damage done if the pred does cause irritation anywhere. The time it takes varies - stomach emptying time normally depends on how much is in the stomach, a good meal slows it considerably, but acid resistant capsules should add at least 3 hours to the medication being absorbed - first the capsule must be broken down and then the normal disintegration and absorption of the pred tablet can start.

Doctors will differ - but if the capsules aren't been broken down in the stomach, the requirement for a PPI is removed. In fact, taking a PPI changes the pH of the stomach and could mean the tablets or capsules start to break down in the stomach in the less acid environment so they shouldn't be used.

[Freshairfiend in reply to PMRpro]

the ones I’ve recommended are from Capsuline uk, with a time delay of 2/2.5 hours I think, could be three. As you say, the delay depends on what’s in the stomach. I only mentioned the Dr T and T ones, as a warning, as they are quite prominent in an internet search.

Thanks for info about PPIs , very useful.

[Tribie]

Hi, I was looking at these, thinking they might help me with timing of dose as I don’t want to wake in the early hours to take Pred (no problem with irritation - just want to delay absorption) but I cannot see the 2-3 hours delay claim anywhere in the info or on the packaging, so am a little confused..

[Freshairfiend in reply to Tribie]

No there isn’t. I either read it somewhere or one of the North American people told me. I I’ll try to find it and get back to you.

[Freshairfiend in reply to Tribie]

I’ve found this thread from some of the capsule users from a year ago, when Capsuline didn’t have a uk based outlet:

healthunlocked.com/pmrgcauk...

I’ll message the three North American people directly to ask them, unless they see this. PMRCCanada was the person who first recommended them I believe and she has been using them for some time to help with stiffness in the morning.

[Tribie in reply to Freshairfiend]

Thank you, that’s really helpful. I just want to be really sure that’s what they’re meant to do before I buy any, of course I know effects are different with different people so will hope for the best…I’ll wait a bit anyway and see if anyone has any more info. Thank you so much!

[PMRpro Ambassador in reply to Tribie]

Have you looked at the Related Posts?

[Tribie in reply to PMRpro]

I’ve looked at some - it’s interesting to see how everyone finds them, whether it’s for stomach irritation or to delay absorption. I do prefer to see actual evidence from the manufacturer though, I’ve clicked on the links in various posts but so far none quote the 2-3 hour delay. It would be helpful if I could find something although at the moment I’m still trying to work out the best timing to cover the inflammation without disrupting sleep too much, which is probably impossible- can’t have one without the other it seems..although as I take an evening dose wouldn’t that cover the 3-4am cytokines? Not sure I’m making sense, I’m coping on about 4 hours sleep at the moment!

[DorsetLady PMRGCAuk volunteer in reply to Tribie]

 PMRCanada wrote this in a reply to another query -

I use enteric coated empty capsules, size “0”. I purchase them online from a company called Capsuline (1000 at a time). I split my dose and was tired of getting up at 2am each evening that’s why I started using them for my evening dose (my morning dose is uncoated pred tablets with food). My evening dose using the capsules is taken around 11pm to be onboard by around 2-3am. Works a charm!

As I’ve tagged her, hopefully she will reply to you

..just wondering if the 2-3am time quoted has been misread as 2-3 hours as the delay before they get into system - usual time quoted is a bit longer 3-4 hours

[Tribie in reply to DorsetLady]

Thanks so much DL, it’s so useful getting others experiences. PMRpro was also saying that the delay is likely to be more like 4 hours or longer depending on other factors. I just need to sit down quietly with a pen and work things out. One blessing is I am virtually pain free all the time, I just need to try and sort the sleep out while not interfering with that. Have changed evening dose from 10pm to 5-6pm, hasn’t been long enough to gauge if it helps yet..goodness there’s a lot to take on board 😦

[DorsetLady PMRGCAuk volunteer in reply to Tribie]

Yes there is… and seemingly the lack of sleep for some is there whatever time you take the Pred. For others it improves as you reduce the level of Pred. I know it can be very troublesome for many, but sometimes you just have to cope with it best you can, and make up for during the day [which is okay if you aren’t working]. ..and be pleased the Pred is working as it should in other ways.

Have a look at his post -and replies of what others did to help -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Tribie]

The delayI'm talking about is getting into the system - at least an hour of that is the pred being absorbed and getting to the liver and being processed. The pred doesn't suddenly magically appear at full strength in the blood and hit the inflammation. there is a run-in time.

[PMRCanada in reply to Tribie]

Sorry for the delay in responding…I’ve been away on vacation.

Indeed I use Capsuline brand acid resistant (enteric) empty capsules to delay the time in which the pred is absorbed, allowing me to avoid getting up at 2am nightly. It also helps greatly in addressing morning stiffness. I stuff uncoated pred into the capsule and take it at 11pm allowing 2-3 hours to dissolve and then another hour to be absorbed. This means the medication is on board by around 3pm.

The link below is from the Capsuline website and explains the delay is 2-2.75 hours, and an additional hour for absorption purposes. I hope this makes sense.

capsuline.com/?gad_source=1...

scroll down to the videos and click on arrow on the upper right side and a video about acid resistant capsules will appear. Click on the arrow in the middle of the related picture to view the video.

[Tribie in reply to PMRCanada]

Thank you for this, hope you had a good holiday 🙂 This is so useful, I’ll have a look. It’s great to have it from the horse’s mouth, so to speak…

[Tribie in reply to Tribie]

This is brilliant, exactly what I was looking for, all the technical details, accurate timescale etc - I wonder why they don’t seem to have similar information on the UK site. Anyway thanks very much. Everyone on here is so helpful!

[DorsetLady PMRGCAuk volunteer in reply to Tribie]

Maybe because it’s easier to get enteric coated tablets [certainly Pred] in UK, so the capsules are not required as much here.

[Dinahmite in reply to Tribie]

Me too re sleep. What are the 3-4 am cytokines?

[Tribie in reply to Dinahmite]

They control the amount of inflammation in your body and apparently are produced around 3-4 am? I don’t know much about them but we need to have the prednisolone on board and active by then to help minimise the inflammation. I’m sure others will be able to give you a much more useful reply though - I’ve only been on Pred for about 6 weeks so am still getting my head around it all…

[Tribie in reply to Dinahmite]

Love your user name, by the way…

[DorsetLady PMRGCAuk volunteer in reply to Dinahmite]

Cytokines

Hi, my understanding in as simple speak as possible -

The substances are called cytokines - and part of our normal release of different chemical during our circadian cycle - you can find plenty of info if you search online, some is quite straightforward, some not!

The primary function of cytokines is to regulate inflammation, and as such, play a vital role in regulating the immune response in health and disease. There are pro-inflammatory and anti-inflammatory cytokines.

When your immune systems is not working correctly as in PMR or other diseases then the anti-inflammatory cytokines do not work correctly and allow the pro-inflammatory ones to dominate. When this happens within the blood vessels it restricts blood and oxygen circulating around body particularly in PMR to muscles around major joints and causes pain and fatigue.

Pred is used to dampened down your overactive immune system including the cytokines, and as the normal time for them to be released in the body is around 4am.

If you take your medication a couple of hours before that (or last thing at night) it is in the system ready to act….however it you don’t take it until after that time, your body may already be stiff and painful , until the Pred has worked (1-2hrs roughly).

Some people find their dose lasts longer than 24hrs so it’s not a great problem for them, but others do struggle so adjust their timings to help.

Hope that explains it.

If you want the medical explanation -

my.clevelandclinic.org/heal...

[Dinahmite in reply to DorsetLady]

Thank you. Very helpful.

[Tribie in reply to DorsetLady]

This is so helpful..

[PMRpro Ambassador in reply to Dinahmite]

In PMR the cytokines (inflammatory substances) are shed in the body about 4-4.30am. It isn't usually as early as 3am, that is typical of other inflammatory disorders. Pro-inflammatory cytokines are always around and have an important role in moderating many processes in the body including healing. The problem arises when they are over-produced or go to work in the wrong places.

[Dinahmite in reply to PMRpro]

Many thanks.

[PMRpro Ambassador in reply to Tribie]

If you split the dose it is quite possible to not ruin your sleep by adjusting the timings. If you take 2/3 of the dose in the morning and then the rest later enough to carry you over to the dose the next morning, you may well find the timing is breakfast and lunchtime and that allows all the pred to be out of your system by bedtime.

[Tribie in reply to PMRpro]

Sounds good, I’ve moved pm dose back to 6ish, am a bit worried about a big jump backwards but it would be great if I could get to lunchtime - I’m scared of the pain returning though. When I was on a single dose the pain started almost as soon as I was in bed but got much worse about 2-3 am, don’t want to go back to that!

[PMRpro Ambassador in reply to Tribie]

Where exactly is the pain at 2-3am?

[Tribie in reply to PMRpro]

It was in my hands and shoulders, the classical excruciating pain that prevented me from turning over in bed, pulling up a sheet, turning on a light…lasted till mid morning as I wasn’t taking my daily dose till 7 or 8 o’clock. That was when I was told to take it. As soon as I split the dose, the pain was completely gone…like a miracle.

[PMRpro Ambassador in reply to Tribie]

I don't quite understand the times doctors give for taking pred. Their insistence is that taking it at 8am mimics the natural production of cortisol so it will reduce the effects on the adrenal glands just doesn't wash for us. It may be useful for patients on short term pred, for a couple of weeks at most, but we take it for years. But the natural production of cortisol peaks shortly before our usual getting up time - by 7am or so for most people. If you don't take pred until 8am, it peaks in the blood after 9am. And in the meantime, the inflammatory substances have been having a field day and the pred has more to do so it takes longer.. No logic at all.

[Tribie in reply to PMRpro]

No, that was exactly what was happening to me.

[tangocharlie in reply to Freshairfiend]

I posted that thread originally. I ddn't know they now have a UK outlet so that will save me a lot of postage next time, thanks for the info

[Freshairfiend]

here’s what one user said two months ago:

I've used enteric capsules (PureCaps USA) with prednisone for a couple years. They claim to delay absorption for 2 hrs, then prednisone takes another couple hours. This suggests that the ideal time would be midnight. I take it whenever I go to bed and that seems to work fine (the timing does not appear to be critical). I use size 0. It's a bit small for my 10 mg. pills, which I cut with a razor blade.

(JASpmr)

As he does not use Capsuline, I’ve messaged the other two who do.

Personally, I just thought I’d give them a go, as they are acid resistant and enteric coated and others had found them helpful. We’ll wait to see what we get back from the other two, but you are always welcome to try some of mine, as the use by date is for a years time, and I will have about 650 left over!!

[Tribie in reply to Freshairfiend]

Thank you so much for this, I keep reading about tapering, then about timing, then looking at these capsules- it’s all too much! I’m muddling myself up, I think I need to go to bed and come back fresh in the morning! But it’d be great to be able to try some at a later date if you have any spare…🙂 Do you find your sleep is much disturbed?

[Freshairfiend in reply to Tribie]

You’re welcome to try them. My sleep is terrible at present, I think because 8m still on a higher dose of preds. I got so tired yesterday though , that I slept ‘well’ last night for the first time in ages. By well, I mean that after 2.30am I was awake and slumbering and sleeping on and off till 630. But I didn’t get up and so felt rested. Some sleep researchers say that proper relaxed rest is as good as sleep. I have a variety of relaxation and getting to sleep mediations to help. Glad you’ve got some really good info from PMRCanada. I’ll let you know if the other person responds.

[Tribie in reply to Freshairfiend]

Thank you, I might take you up on that when I finally manage to sort myself out, depends what time I end up taking both doses. I don’t know why I’m finding it so complicated, I didn’t used to be befuddled like this. It’s interesting how we redefine a ‘good nights sleep’, I’m now happy if it’s more than 4 hours without a 2 hour gap in the middle..but I still am so grateful to whoever developed Pred, when it works well for the pain (as it does for me) it’s amazing. Have to count my blessings..

[Freshairfiend in reply to Tribie]

Yes, blessings ar every much counted in this house. I think people call the brain fog ‘PMR fog’ , pain and lack of sleep does that for me, I think….I used to blame it on the menopause, ageing,,,, but definitely my otherwise sharp brain has taken a pasting since PMR. It’s all very new and confusing. I’m only now, over three months later, feeling I’ve got mor of a handle on what’s needed, prioritising etc.

[Tribie in reply to Freshairfiend]

I’m about halfway there then!

[Freshairfiend in reply to Tribie]

the other person replied to me directly, with same info:

I had read the same time somewhere but also can’t remember where. I am just happy that it makes the pills easy to swallow and I don’t have to worry about taking them with food. I just checked their website- there’s an embedded video in the enteric capsule section and they claim 2-2.5 hr.

[Polygolfer]

While the subject is how the gut plays a key role in our wellbeing, there is another interesting article in The Times today about the perverse impact of ultra processed food on our health and the associated risks of a poor diet on chronic inflammation, heart disease, diabetes and cancer. Increasingly the scientific and medical community are calling on Tobacco type regulation on ultra processed food intake. Would save the NHS billions and many, many lives.

[Tribie in reply to Polygolfer]

I would totally support more regulation re UPFs, they have such a negative impact on our health and I believe are a major factor in the rapidly rising rates of obesity and ill health , especially in the US and UK. I listen to the Zoe podcasts, there’s so much good quality information there on all aspects of health and nutrition. I’ll get the Times later and have a read, thank you.

[Polygolfer]

There could also be a connection with PMR… first because ultra processed food is known to cause inflammation, precisely what pmr sufferers do not want. Secondly because overtime ultra processed food can cause damage to the gut micro biome and once the gut starts malfunctioning it allows all sorts of tasties to get into the blood stream possibly causing the immune system to believe it’s under attack… There are many studies about this both existent and ongoing but irrespective of what you read or choose to believe in, there is no denying that eating fresh produce, non manufactured food, lots of fiber and naturally good foods for the micro biome cannot be worse than eating all the ready made fast food garbage.

[Tribie in reply to Polygolfer]

No absolutely, there’s so much evidence to support all that you’ve said, the diversity and balance of the gut microbiome is so important to a healthy body (and mind) - I have changed my diet massively over the last couple of years, but am focusing on it even more since PMR as I believe, as you do, that avoiding UPFs, focusing mainly on fresh, home cooked, mainly plant based foods is key to minimising inflammation in the body and maximising health. And even if it didn’t affect the progress (or otherwise) of my condition I just feel better eating this way.