Do you use capsules to take your pred to avoid gastric issues and/or delay it working so you can take it before bed? Please share ...

[PMRpro]

If you have started to use gel capsules to put your pred into for whatever reason could you please share your experiences on this thread? It might be to reduce gastric symptoms or it might be so it is released later so nearer to 4am - doesn't matter, just need to know how it has worked for you and if you had any problems or lightbulb moments!

[Estellemac]

Not heard of gel capsules. I take Lanzoprosol an hour before in the morning. Where do you get them from?

[PMRpro Ambassador in reply to Estellemac]

On-line mostly I think. A couple of Canadians have done so over the years.

[Sefu in reply to Estellemac]

Amazon seem to have a whole range, but I haven't investigated to find "gastro resistant". You have to watch out for size of capsule as well. You can get home 'capsule fillers'. Amazon links just fyi

amazon.co.uk/gp/product/B00...

and

amazon.co.uk/Capsules-Machi...

[jinasc]

How pleased to see that you are still curious and pick up on items that pass some of us by.

I have watched with interest the posts of gel capsules etc...................bet you would never have guessed I started to write you an email on this very subject to you, so now I can scrap it. I should have known it would not have escaped your attention.

Without you would I be where I am today?

[PMRpro Ambassador in reply to jinasc]

Probably much more comfortable

[jinasc in reply to PMRpro]

Bored more likely 😊 I will always love roller-coasters and lateral thinkers, not necessarily in that order.

Now I need a 🥃🥃or two.

[PMRpro Ambassador in reply to jinasc]

Calm down - bit early!!!

[jinasc in reply to PMRpro]

Been up since 5am.......................

[PMRpro Ambassador in reply to jinasc]

Fair enough - lunchtime by now!

[Grammy80 in reply to jinasc]

You are supposed to be resting~!🥃 Here's to you~!! xo

[jinasc in reply to Grammy80]

No more from me for two weeks at the least, from Wed next I am 🛌 💤 😴 🛏 🛁

Take care xxx

[Grammy80 in reply to jinasc]

You'll be missed but so happy you will be resting....and unplugged~!💖💖

[Pixix]

Never heard of it but take lanzoprozole (spelt wrong) with steroids between 2 and 3 each morning. With one savoury biscuit. Would be interested as this isn’t my favourite night pastime!! Thanks S x

[Maisie1958]

capsuline.com/

I’ve never tried this but just had a quick look around on line -I’m in the Uk and had gastrio-resist/enteric coated prednisolone 5mg and 2.5mg but the 1mg ones weren’t available when first diagnosed. Lots of gel capsules available on Amazon but not delayed release as far as I can see. The above website has them ( I have no affiliation with them) and has a bit of background reading. It’s North/South American based

[Maisie1958]

PS plenty of places to get ordinary gelatine or vegetarian empty gel capsules of various sizes in the uk and lots more websites selling delayed release capsules but can’t find any selling to the public in the uk in a quick search. Do many people use them in Britain? All the best.

[Theziggy in reply to Maisie1958]

Try this amazon.co.uk/empty-gelatin-...

[Sefu]

I googled "Gastro resistant capsule" and got this: "simply means that the drug is resistant to being broken down in the gastric system. Some medicines need to be absorbed in the intestines rather than the stomach, so they are given an enteric coating to help resist breakdown from stomach acid."

Is that the difference that is achieved by making Pred. with an enteric coating ?

So potentially Omeprazole capsules are "gastro resistant" and if we put uncoated Pred. or Methylpred. (which is not available in an enteric coated version), in the SAME TYPE of capsule as Omeprazole, we will have achieved "enteric coated Methylpred./Pred" ?

[PMRpro Ambassador in reply to Sefu]

Basically - yes.

[Sefu in reply to PMRpro]

I think I will contact the Omeprazole outfit and ask them what type of capsule they are using .. is it simply gelatin or whatever. I will report back.

[Cyclegirl54]

I take an Omeprazole with the pred in the morning before my breakfast. Can report no issues with taking Ome but I also have a couple of teaspoons of Greek yoghurt at the same time as I’m usually a bit peckish.

[PMRCanada]

I purchased Clear Enteric Coated/Vegetarian K-caps Capsules (size 00) and stuff them with the 2/3 part of my split dose. I take it at 11pm and the dose is on board by 4am, saving me getting up every night at 2am to take that dose. Works like a charm! Take the other part of my split dose (1/3), at 11am. This regime works wonderful and I have very little stiffness or pain throughout 24hrs, it just took some time and experimentation to get here. Where there’s a will, there’s a way.

Please note I discussed splitting my dose with my GP prior to implementation (as I was still stiff until early afternoon each day when taking single morning dose). Best to check with your physician before changing how you take your pred dose.

A forum member responded to my original post with the following supplier in the USA which was much cheaper. See below:

“I bought size 0 on Amazon, this size fits my 5mg and 1mg, nicely. The capsules were $20.00 US.

PurecapsUSA Empty Vegan Acid-Resistant (Enteric) Capsules – Size “0” – 1000 Fillable Caps – Kosher/Halal – Hypoallergenic – Vegan - GMO Free"

[PMRpro Ambassador in reply to PMRCanada]

Thank you - that's the sort of info we wanted!

[Estellemac in reply to PMRCanada]

I will give it a try. That might also help if I have to take Naproxen for my arthritis.

Good response thank you.

[PMRCanada in reply to Estellemac]

Just be careful taking Naproxen while also taking pred. I was on 1000mg a day coated caplets for 6 months before finally getting my PMR diagnosis. When I started pred my GP told me not to take Naprozen anymore.

[Estellemac in reply to PMRCanada]

I can’t manage on 4 mg pred without Naproxen for my Osteoarthritis. The doc said when she gave them to me for my broken foot just take them 2 hours apart. The gel capsules are a good find thanks b

[PMRpro Ambassador in reply to Estellemac]

How much pred COULD you manage on for the OA?

[Estellemac in reply to PMRpro]

10 is ok

[PMRpro Ambassador in reply to Estellemac]

I'd choose that rather than naproxen myself - but I know few doctors would.

This

drugs.com/sfx/naproxen-side...

compared with pred doesn't look very good either does it?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Surely one set of side effects (well trod!) is better than two.

[PMRpro Ambassador in reply to DorsetLady]

My point exactly!!! Can you see much difference between the two?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Norra lot!

[Estellemac in reply to PMRpro]

I have taken Naproxen for twenty years no wonder I’m a wreck😳😱well there off the menu now. Good job tomorrow is MAD MONDAY. Moaning At Doctors day.

[Estellemac in reply to PMRpro]

Think I need a consult with my Rheumy.

[Estellemac in reply to PMRpro]

Since I got the foot fracture with no trauma caused by me I’m not sure what to do as last time I got down to 3mg on pred that’s when my hip replacement was diagnosed. Hadn’t felt anything that bad till then. Waited another 9 months for the op by which time I had escalated from cocodamol and Naproxen to Morphine but pred stayed at 5mg for the op.

[DorsetLady PMRGCAuk volunteer in reply to Estellemac]

I found that hip pain was the worst of my “need to be replaced joints”... but fortunately fast tracked- not sure I could have survived as long as you! Well maybe with similar drugs.

[Estellemac in reply to DorsetLady]

Worst year ever but behind me now and I did have Parker to train and take the brunt of my misery. He’s still here amazingly!!

[DorsetLady PMRGCAuk volunteer in reply to Estellemac]

Got staying power, that man!

[Bcol in reply to Estellemac]

Hi, like PMRCanada I also came off Naproxen on PMR diagnosis. Only use Co-Codamol as and when needed for my OA.

[benhemp in reply to PMRCanada]

Thanks for sharing your experience and the Amazon lead. Very much appreciated!

[miss-philosopher]

I use the gel capsules every day for my plain pred. I got the advice here un HU some years ago and it really helped my sensitive stomache. It kickes in about 5 hours later. But I`m not sure I absorb the whole lot, because in the same period I have not been able to taper to under 20 mg ( have both pmr and gca since nov 2014 ).

[miss-philosopher]

I pay £ 11 for 360 capsules from our local health care shop. Mine are not vegan, but made of ox gelatine. I believe they absorb better than the stiff plant based capsules.

[Grammy80]

I never cease to be impressed and amazed....never heard of these. I do know that taking my prednisolone early am has made a positive difference. Would this be as simple as taking the meds in this capsule before bed and not setting my alarm? 🥃 clink!

[miss-philosopher]

Yes, that`s what I do - so for you it could be worth a try.

[Megams]

~PMRpro - thank you for this post which I managed to miss.

As previously mentioned my hydrocortisone has been made up in a.r capsule for almost 5.5 years now by a compounding company in Auckland where I live.

The cost over that time has been prohibitive & only asked them recently if I could purchase the empty capsules myself as when inquired previously told these a.c.r caps imported from Australia - she gave me a quote of $160 NZ (can't remember how many as shock of price was enough)

From your post + the replies I will continue my inquiries with the view of MAYBE changing to pred (no enteric coated in NZ). I will need to run this past my Rheumie too as have many new health issues now.

Arms are getting tired from digging for that elusive oil well in my back garden

[benhemp]

My rheumy told me that I could only get the delayed release prednisone (Rayos?) in the UK, so it was not available here in the US. A few days ago when I saw one of your other threads suggesting enteric coated capsules could be a way to get the same effect, I did some searching and found an outfit in my local area of NY state that sells them. I have no affiliation with them and have not tried using their capsules; this is just web knowledge. I share the link here in case it is helpful to others.

capsulesupplies.com/enteric...

[PMRpro Ambassador in reply to benhemp]

Your rheumy is lying (to put none too fine a point on it). Lodotra/Rayos (European/US brand names) is NOT available in the UK, except on private prescription. It was approved briefly for RA but removed from NHS lists a year or so ago. Rayos, the US brand, IS available in the US, or at least WAS available in the US but it depended on your insurance because the price in the US was prohibitive (because of the system of piecemeal purchasing). It possibly isn't available in the US now - it is still available in Europe.

[benhemp in reply to PMRpro]

Thanks for the correction! Looks like my rheumy was not up to date about it being available in the U.K. (I may have mis-remembered his comment about the U.S.; he may have been saying that it was not available in the U.S. because it was prohibitively expensive.)

It is encouraging to read that PMRCanada reports the enteric capsules are working well for her. Have others been doing this as well? Seems like a nice affordable alternative. I definitely find my pain and stiffness are worst at the end of my night in bed.

I also noticed on the Rayos site that you can only get it in 1, 2, or 5 mg, and you can't split the tablets (it destroys the time-delay feature). The enteric capsule approach does not have that limitation. This is good for PMR sufferers because many of them are splitting pills for a finer taper.