Update on digestive/distress with high dose Pred.

[SheffieldJane]

Thank you for the advice I received. I have moved painlessly to Entric Coated Pred that I take with Yoghurt at about 1.30 am having takes Lansoprazole about 30 minutes before ( benefits of Insomnia). I felt a bit “acid stomach initially” now everything has sorted itself out. I can hardly believe that I went from truly frightening “ heart attack level” pain to almost normal digestive functioning within days. Thank you for pointing me in the right direction. Very, very relieved and no ghastly tests.

[Rimmy]

Great - so pleased you are feeling much better !! - some medications - even though we don't really ever want t take any 'extra' - can do wonders - and I am personally very grateful for those !

XX

[SheffieldJane in reply to Rimmy]

I realised that I had become very fatalistic and had no hope at all. Just not primed for good news. So glad that Australia is doing so well. I’ve got a girl crush on NZ Jacinda too. Good travel bubble to be in. 💫

[Rimmy in reply to SheffieldJane]

Yes Jacinda is just "FAB" and being a Kiwi (well originally anyway) I am also happy to 'boast' that Aotearoa has done so well during the pandemic. Anyway Jane don't lose heart - things will improve over time and there's still lots to look forward to - and not having an excruciatingly sore tummy will help. Just on the Lansoprazole - in case - if your stomach/chest still feels 'tight' or your throat still 'feels' acidic on and off you may need a dose adjustment. I may have said this before but I take 30mg morning before breakfast and again in the evening (before dinner) and that has worked perfectly for me 99% of the time - but you may be fine on a single dose - we are all different I know. The main thing is not to have that residual acidity which can over time cause damage as well as discomfort Take care

X

[SheffieldJane in reply to Rimmy]

Ahh! The doctor said evening as well, perhaps I should just do as I’m told then.

[Telian]

Pleased you’re sorted out and feeling better. Always best to share a problem as they say and this time it was reasonably straightforward and a relief no further testing was required.

[SnazzyD]

So pleased, it’s flaming awful isn’t it? Pardon the pun

[DorsetLady PMRGCAuk volunteer]

Good.🌸

[Mary63]

So pleased Jane. Thanks for letting us know.

[PMRpro Ambassador]

Glad your GP was prepared to give it you. I got on well with e/c - until I got a dodgy batch and didn't!! Why they were so dodgy I have no idea but the 5mg batch didn't work, the 2.5mg ones did. Both lots were dispensed at the same time but both were loose which was a whole new concept to me. I do like the security of my medication coming in original packaging!

[Phoenix51]

That is so good to hear 😊I’m so please for you. Thank goodness it’s been resolved. The other bonus is your experience May also provide helpful to others going through similar .. the wonders of this Community ! 🌈

[Omanain]

Great news!

[Gumnut]

Morning 🌞Thats good news Jane. The first thing my GP insisted on 2 years ago was that I take Omeprazole first thing before steroids as does affect stomach acid. Also take calcium/Vit D. And yes live yoghurt always good. I take probiotics too. I can't seem to get below 3mg. Does anyone have any advice pleae.Can't cut pills as enteric coated. Also are we definitely more vulnerable to Coronavirus, even on small dose Pred? Friends wanting to have walks and picnics now but I am cautious. Stay safe. Xx😷

[yogabonnie]

Oh Jane. I am so glad. Now the long journey dow down down. I am up to 8 as of this morning.. from my 2. but a week at 6 didn't quite cut it. But cannot complain..didn't have to do anything like you have done. but you will be back down soon!! keep on keeping on Covid won't get us!!! It's terrifying and so so sad here in Minneapolis and ST Paul with the killing but I will save this for Off Piste. Pray for George Floyd.

[SheffieldJane in reply to yogabonnie]

Yes I feel the grief too. 🙏

[York54]

So glad you are feeling better Jane. I am so glad of lansoperazole , just take 15 mg half an hour before breakfast makes such a difference to me. I occasionally take one at night too if I’ve eaten spicy or had a glass of wine. Keep on keeping on, you’re doing grand as we say in Yorkshire x😘

[SheffieldJane]

Do you take it after the wine/ spicy food or in anticipation of it 30 minutes before?

Thanks for your good wishes. X😘

[PMRpro Ambassador in reply to SheffieldJane]

It's a preventative not a remedy. After the curry you need gaviscon! But taking lansoprazole with or after food halved the level of the drug in the blood - so 1/2 hour before food is optimal.

[York54 in reply to SheffieldJane]

Usually just before bed , it will have been a while since I’ve eaten then. Best taken on an empty tum. Like PMRpro says, sometimes Gaviscon does the trick as I get a lot of reflux when I lie down at night. It once woke me up , burning my throat and into my mouth , thought I was choking! 😱😱😱

[SheffieldJane in reply to York54]

That sounds horrible. I have been sleeping on my big sheepskin , stuffed, horseshoe so I am on an incline. It’s like a cuddly teddy. My OH has lost his place.

[GratefulBailey]

I envy you ....my acid reflux continues, despite my prescription for Tecta being changed to Dexilant to see if that makes a difference. After a severe episode (2days) of eating only rice and soda crackers (great for the blood sugar!☹️), I was able to resume a bit of “regular food” yesterday. I have a telephone consult with my rheumatologist on Thursday and this will be on the top of my list of concerns I have; my GP is willing to refer me for a scope. Her “gut feeling” ( pardon the pun) is that it’s a result of the prednisone...no coated ones here in Canada!

[PMRpro Ambassador in reply to GratefulBailey]

There are/have been people who have obtained gastric resistant capsules and put their pred in them. Seems to be beneficial. Another option would be to manage the PMR/CCA using depot-medrone injections.

[GratefulBailey in reply to PMRpro]

Thank you for your prompt reply....I wasn’t aware of gastro resistant capsules!! Thank you thank you!!

[PMRpro Ambassador in reply to GratefulBailey]

There are lots of capsules available, check they are gastro-resistant and big enough. I THINK PMRCanada may have been one person who did it. And look around - they vary a lot in price.

[SheffieldJane in reply to GratefulBailey]

I see that you’ve had a very good idea from PMRPro. Fingers crossed for you, it is horrible. It is definitely linked to higher dose Pred with me and it appears in the listed side effects.

[GratefulBailey]

That’s when it started for me as well. My rheumatologist told me to double up on my Tecta which I did for a week. Unfortunately it just keeps flaring up even though I am on a low dose now. I feel like I’m walking on a tightrope every day, not knowing what will tip me over into that horrible burning pain.

My husband went out to the drugstore this morning, but was told they don’t carry the capsules. So back to the drawing board... so far, so good today. One day at a time for so many reasons, right?

[PMRpro Ambassador in reply to GratefulBailey]

Look on the internet - a pharmacy would have to order them, that would mean work ...

[GratefulBailey in reply to PMRpro]

Will do - thanks!

[Bj2016]

I'm so pleased that the gastro resistant pred are helping. Just to lend my support, 30 mins before your evening meal is the ideal time for lanzoprazole/omeprazole. If you are taking them twice a day, by all means take the other in the morning, but I'm pretty sure you will get the best results that way. As PMRpro says, they are preventative, to stop the excess acid rather than damping it down after it's produced. I have an alarm on my phone to remind me. In normal times, if I am with them, my daughter and granddaughter chorus "omeprazole time" when the alarm goes off. Sigh.

[SheffieldJane]

Thank you! What a lovely picture you paint. I want to take the Entric Coated Pred in the very early hours to try and head off the body’s release of Cytokines ( inflammatory substance). I therefore need to time the Lansoprazole for before this. So far, this one dose seems to be sufficient to control my symptoms.

[PMRpro Ambassador in reply to SheffieldJane]

If you are aiming for the e/c pred to be available at 4am, you should take it immediately before bed, about 11pm would be ideal. It takes 4-5 hours to reach a peak in the blood since it has to pass through the stomach before it can be absorbed at all. It isn't the same as using plain pred whic is absorbed in under a couple of hours.

[SheffieldJane in reply to PMRpro]

I didn’t realise that it took so long. In many ways that will be easier and maybe get rid of the hot spot on my temple which is all that’s left of the headache. Thank you.

[PMRpro Ambassador in reply to SheffieldJane]

It has been discussed several times on the forum - if you do that it is similar in action to Lodotra/Rayos. Lodotra is not available on the NHS whereas e/c is - UK only of course!

[SheffieldJane]

Right! 🙏

[Tamtan2]

I have suffered the same as you waking up every morning 1-2am with the most excruciating like heart attack pain I will be asking doctor about enteric costed prednisone also the yogurt before hand I now have a distended stomach going for endoscopy.

[SheffieldJane in reply to Tamtan2]

Oh are they doing those again? I was all set to have one, but I think I’m ok for now. The Lansoprazole is helpful, I didn’t get on with Omeprazole first time round. I do get the bloating, it is a Pred thing as well. I hope you are sorted out soon. Good luck!

[PMRpro Ambassador in reply to SheffieldJane]

My daughter's department in Scotland is accepting patients again.