Difficulty in reducing steroid dose

[Hidcote]

Thank you to the many people who provided help about my difficulty in taking plain pred, I have now managed to take the coated pred. If I took it in the day, I got some reflux into the stomach and pain about 3 hours later but I am now taking it at about 3 am and then I take some Esomeprazole before breakfast as I have a hiatus hernia. This seems to work.

However, I am having difficulty getting the inflammation under control. I have been told my Inflammation has never been controlled. See below

17 May 2016 ​6.5 normal

24. March 2021 ​ 87.7

20 April 2021 ​11.5

8 June 2021 ​7.6

17 December 2021 ​ 8.5

14 July 2022 ​8.2

1 December 2022 ​10.4

25 May 2023 ​ 8.1

23 August 2023 ​13.6

17 October 2023. ​17.6

7 November 2023. ​55.4

14 December 2023​ 28.8

9 February 2024​ 14.8

10 April ​​ 2024 18.6

31 May 2024 ​​​ 20. 9

I flared badly last summer because of the death of a friend and the inflammation is still not controlled. I was on 10mg this April after following the Forum’s suggested flare procedure in March because of a flare caused by extensive root canal treatment . But the increase in steroids upset my stomach. This May, perhaps foolishly, but largely because of the stomach issues I tried to titrate to 9.5 mg. I can now feel my hip flexors and quads tightening which for me is a bad sign, confirmed by the slight increase in CRP. I have decided to follow flare procedures and go to 15 so that the inflammation does not continue to build up but am worried about upsetting my gut in the way my stomach has been upset. I know the Forum’s recommended flare procedure but am not sure in my case how long to stay on 15 before dropping back. It is a difficult call because I know repeated flaring and yo yoing is not good.

Any suggestions about how long to go to 15 and whether to drop to 10 or 11?

( I did try taking 10 coated at night and 5 plain in the morning but my stomach was not happy with that.)

I have a rheumatology appointment in about 6 weeks and suspect I will have to agree to taking methotrexate because of the difficulty in controlling the inflammation.

[DorsetLady PMRGCAuk volunteer]

You need to stay on the increased dose for long enough to get things back under control - and obviously that varies.. but you can stay on that for up to 14 days without having to do a slow taper afterwards.

So I’d try that - and then down to 10mg… but using all EC tablets.

[Hidcote in reply to DorsetLady]

Thanks

My great worry is that the enteric coated will mess up my guts. I then I think injections might be only option.

All rather worrying which is not good for the inflammation either.

[DorsetLady PMRGCAuk volunteer in reply to Hidcote]

Thought the EC ones helped stomach…. and no, worrying is not good, but not always easy not to…

[SnazzyD in reply to Hidcote]

What makes you think the enteric coated is messing up your guts? I found certain times of day were bad for my stomach regardless of when I took the Pred.

I had e/c tablets but still needed nighttime gaviscon. Omeprazole and its relatives made by stomach much worse and made me feel generally ill so I tried H2 antagonists which were much better but I eventually got rebound acid. In the end it was e/c + Gaviscon but there was a boiling lava phase for a few weeks until it all settled down.

Do your markers correspond directly with symptoms or do you have periods of no symptoms but raised markers?

[Hidcote in reply to SnazzyD]

I felt some reflux from the ec tablets about 3 hours after taking them if I took them in the morning but not if I took them at night. My markers have been raised for sometime but I was managing on ten mg of pred despite have a marker of 18.6 CRP in April, it was trying to go very slowly to 9.9 that was problematic.

It was helpful you stil needed gaviscon and an H2 antagonist even on ec pred.

[SnazzyD in reply to Hidcote]

I didn’t have both the H2 and gaviscon at the same time. It was one or the other. I still had a feeling of irritation when the Pred was getting properly into my blood stream some hours later. I don’t think it was the tablets.

Half the time it’s a mystery but we soldier on trying to work it out.

[PMRpro Ambassador]

Not that there is any guarantee that the MTX will control it either.

When you say "injections" - injections of what?

I think that SnazzyD needed both e/c AND Gaviscon, not sure if she also needed a PPI/H2 antagonist. Have you tried that?

[Hidcote in reply to PMRpro]

Someone mentioned injections on a recent post in relation to my previous posts on stomach issues. This is what was said.

“I had to give up on oral steroids because of the damage they caused to my stomach. I now have Depo-Medrone injections every four weeks.,tapering every three months. They are not as adaptable as pills obviously because you can't up the dose for flares etc. but they do get the steroids into your system without such drastic effects. ( It took a couple of months for my painfully swollen stomach to reduce back to normal size after I'd changed from oral to intramuscular.) Is it worth discussing these injections with your Dr? You.might have to go armed with all the information you can find on here.Good luck. I know it's no fun rolling in agony with a stomach the size of a football!!”

My doctor has suggested adding in an H2 antagonist and was well as a PPI which sounds a bit much.

He says liquid Gaviscon better than chewable tablets.

[PMRpro Ambassador in reply to Hidcote]

I asked because both pred and MTX may be used as injections.

The problem with injected steroids is that the injections MUST be done in a timely manner and some people have struggled to get the appointments reliably with the mess in GP practices (even though it is the nurses who do them). Despite the clear description of the technique, there are not a few rheumies who fail to grasp that deep i.m. injections work in a totally different way to injections for joints and can be given monthly on a regular basis and they therefore to do them as required. There are success and abject failure stories about their use.

[PMRpro Ambassador in reply to Hidcote]

Forgot to say - you do have a complication with the hiatus hernia which is what is probably the reason for the severity of your symptoms. Worth trying the belt, braces and velcro approach. Not least because some of the PPIs can CAUSE problems or don't work 100%.

[Hidcote in reply to PMRpro]

May be am on too many things. Snazzy says she used only Gaviscon or the H2. I am not too keen on methotrexate having read up on it but may need some help from Rhematology because of stomach issues.

Thanks so much for both your and Snazzyz’s advice.