Ever decreasing circles….

[Janann25]

I thought I’d write a separate post to avoid writing to each person individually - I hope that’s OK?

After being told the Eye Clinic was appointment only, I eventually managed to speak directly to the Sister in the Clinic. She was very helpful and managed to speak with the actual doctor who had set up my reduction schedule. He confirmed his diagnosis - not GCA - and said to get back to Rheumatology for advice. And if they wouldn’t help, to get a name and he would contact them himself!

Anyway, I left another message with the Rheumatology department and have just had a reply. The rheumatologist is adamant that I don’t increase my Pred but they will send an appointment next week for a review. I explained again that I was having PMR type pains plus feeling dizzy, but she just said to call 111 if I felt worse over the weekend. So, I’m back to monitoring my vision/symptoms and will take further action if I get more concerned.

As I said - ever decreasing circles😉

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this.

Ever decreasing circles, and passing the buck...not good enough from Rheumy Dept..

[PMRpro Ambassador]

I can't help feeling I'd have been told to come in "now" by my guy if he was working. And if I felt bad enough, the duty rheumy would have seen me,

And if they have managed to cause a flare of PMR - what would/could 999 do? Make some notes about the pred history - just in case you do get worse, so that the paramedics can see what is/has been going on.

[Janann25 in reply to PMRpro]

Well, I’m still functioning at the moment, albeit VERY slowly, and my vision is ok. I take my enteric coated Pred about midnight - I don’t sleep well so leave it as late as possible to help with the 4am shedding - so I’ve made a unilateral decision to take extra tonight. If it helps, I’ll stay there and cope with the fallout from the rheumatologist when I see her.

[HeronNS in reply to Janann25]

I understand enteric coated pred may not be absorbed as fully as standard pred.

[PMRpro Ambassador in reply to HeronNS]

But it shouldn't matter - that is one of the reasons for titration of the dose, not everyone absorbs the plain pred the same either.

[HeronNS in reply to PMRpro]

But if you've been told to take a specific dose and don't have enough pills to increase, wouldn't that be a problem? I also just read that there is insufficient evidence that enteric coated pred reduces the incidence of the gastric problems it's supposed to avoid.

[PMRpro Ambassador in reply to HeronNS]

That's the same with any form of pred if the doctor doesn't understand titration.

Don't know - but ask on the forum: Snazzy for one needed e/c as well as everything else and I know of quite a few who really did need e/c to avoid problems.

[HeronNS in reply to PMRpro]

Can't get it here anyway even if I felt I needed it. Just thought it was interesting. I have heard at least one person complain that it didn't work as they thought it should - in fact I understand you still should be taking it with food and that person hadn't been. So....?

[PMRpro Ambassador in reply to HeronNS]

I don't think with food is that necessary for e/c - it is for the delayed release form Lodotra/Rayos.

[HeronNS in reply to PMRpro]

I only say this because there was a discussion somewhere on the forum within the past few months where someone was saying this form didn't seem to be working (i.e. to prevent gut symptoms), and it was suggested it might be better if taken with food.

Actually further reading, food slows down the absorption even more! What I would find most concerning is apparently the release is variable from patient to patient and sometimes the medication is not absorbed at all. This is probably more important when it's being taken for adrenal insufficiency, but obviously would have some implications for symptom relief in other conditions.

[Flutterbies57 in reply to PMRpro]

That’s me !!!!! Just suffered 3 times this weekend .

[Flutterbies57 in reply to HeronNS]

Can’t get the coated pills here !!!! Eventually I knew it would create a problem for me as I was prone to it . (Silent reflux causing throat scarring and restriction .) The problem it creates has just reappeared this weekend . 🥵I knew I should FIGHT to get coated pills here , but I didnt muster up the energy at the time . Now I am older and grumpier , maybe I will push to get them this time . Sorry all , I just wanted to have a moan and a groan 😩. Here we go again , another health problem !

[Janann25 in reply to Flutterbies57]

That’s so hard for you - I have been fortunate in getting the coated Pred but recently had a similar problem when my usual pharmacy couldn’t get the 1mg coated Pred. I was on 6.5mg at the time and took 1x2.5 plus 4x1 so needed a lot of the 1mg tablets. I spent the best part of a day tracking them down but then had to get a new prescription in order that the new pharmacy could supply them. There’s definitely nothing easy about dealing with this illness!!

[Flutterbies57 in reply to Janann25]

I hope I have some fight left in me on Tuesday when everything reopens . I had gut problems immediately when our source of tablets came from a different country a couple of months ago . They are always looking for the cheapest supply . I know I am sensitive to changes but …. I guess we will get thru it ….. again

[Janann25 in reply to Flutterbies57]

Im so sorry about your struggles - this illness definitely isn’t for the weak-hearted. I’m sure you’ll have some fight left in you - “big girl pants” definitely needed😉. It’s worth trying other pharmacies - my own pharmacy is still saying the 1mg coated Pred isn’t available any more, even though the other pharmacy got them in for me the next day!! Please let me know how you get on. Jan

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

Flutterbies57 is in New Zealand, so that may be the issue....

[PMRpro Ambassador in reply to Janann25]

Enteric coated is only available in the UK - nowhere else in the world as far as I know. And I don't know why!!!

[Twopies in reply to PMRpro]

I think it’s available here in u.s, but only at certain pharmacies.

[PMRpro Ambassador in reply to Twopies]

There is a coated formulation you can get in the US - but I think you mean Rayos/Lodotra which is a delayed release formulation which is released still in the stomach, just 4 hours after you take it. Not the same thing at all. The coating is a timed release - enteric coated passes all the way through the stomach and is released and absorbed lower down the gut, protecting the gastric mucosa.

[HeronNS in reply to Flutterbies57]

Is there anything which seems to trigger the silent reflux? I was just reading that paradoxically low stomach acid can be a culprit as it slows down the digestion of food so it stays in the stomach longer. Quite an interesting subject, actually, and it seems like traditional methods of dealing with it, including medications, may only cover up symptoms, not deal with root causes. Of course that is true of a lot of our mdicines, including pred!

[PMRpro Ambassador in reply to HeronNS]

Hence the success of jinasc's lemon juice in water remedy

[Janann25 in reply to HeronNS]

I don’t know about any differences in absorption but know that I’ve successfully taken enteric coated Pred ever since diagnosis. I have an hiatus hernia which would be adversely affected by uncoated Pred and the coated Pred has prevented any problems.

[HeronNS in reply to Janann25]

Interesting, glad it's worked for you.

[Flutterbies57 in reply to Janann25]

I have had hiatus hernia op , but it helped for only about 5 years . I tried ( but not good enough) to get coated pills here . I have always taken pred with food and I have survived it for a few years , but this weekend , food has stuck in my throat 3 times . My reflux has always been silent , but this weekend I have suffered probable scarring of the throat again , and food could not pass . This popped up at an appropriate time for me to have a grizzle . Today I am mad about my new problem , tomorrow I will probably just be sad about it . I might need a right royal kick in the butt , to ‘pick myself up , dust myself off , and start all over again ‘.

[123-go]

Ever decreasing circles coloured with shades of despair! Where's the due diligence? So sorry about this. Take care and do what you have to do.

[Janann25 in reply to 123-go]

Thank you.

[AnniesRyder5]

Oh dear but sadly indifference seems to be the new norm😟

[Janann25 in reply to AnniesRyder5]

Yes, and also worrying.

[Bedwell]

Could someone explain about coated or not coated pred please? How do I know what I’m taking????

[HeronNS in reply to Bedwell]

I'm sure someone who knows will explain the difference, but I think it extremely unlikely that you would have been prescribed coated tablets without being told. The standard pred tablet, which is all I know, is a small, flat, round tablet, 1 mg clearly smaller than 5 mg. I understand coated tablets are coloured.

[PMRpro Ambassador in reply to Bedwell]

Enteric coated or gastro-resistant prednisolone is only available in the UK and is designed to not be broken down in the acid environment of the stomach but pass through to the duodenum so there is no gastric irritation which could cause damage and bleeding. It comes in 5, 2.5 and 1mg tablets. 5mg are red, 2,5mg brown and 1mg light yellow. Plain pred is almost always white and comes in 5mg and 1mg doses although one company makes 2.5mg tablets that are yellow.

[Bedwell in reply to PMRpro]

Thanks! Mine are white!!!!

[Sharitone in reply to Bedwell]

It would say on the box if they were e/c or g/r.

[PMRpro Ambassador in reply to Bedwell]

So the plain, non-coated version. e/c look a bit like Smarties I suppose.

[Karenjaninaz in reply to PMRpro]

In the US there are also 10 mg tablets, 20 mg tablets at 40 mg tablets. I was given these when I had the asthma exacerbation in October.

[DorsetLady PMRGCAuk volunteer in reply to Karenjaninaz]

UK -10mg,20mg,25mg & 30mg also -I was on 25mg early days for GCA.

But the most common ones used for PMR are the lower doses that PMRpro quoted.

[PMRpro Ambassador in reply to Karenjaninaz]

The enteric coated tablets are prednisolone and do not come in larger denominations - if you have 10mg or above, they must be plain pred.

[Karenjaninaz in reply to PMRpro]

Yes. I thought we were talking about the plain prednisone.

[PMRpro Ambassador in reply to Karenjaninaz]

It was the difference that someone asked about, how you know