Reduction of Prednisolone

[Bopants]

I have seronagative rheumatoid arthritis and I have been on Prednisolone for 16 years. My dose has been mostly 5-10mg. I have now started Adalimumab, mostly to hopefully allow me to decrease, and hopefully stop, Prednisolone. Unfortunately, my adrenal glands are not producing cortisol, so they need to be encouraged to restart by careful and slow reduction of Prednisolone, my adrenal glands look normal on CT scans. Has anyone been successful in doing this? I would be very grateful to hear your stories, as I would love to get rid of it. My arthritis has been in remission for a couple of years, and I have been told it is likely to stay that way as long as I am having Adalimumab. I have recently reduced to 4.5mg per day.

[DorsetLady PMRGCAuk volunteer]

Many of us on here have got to zero and adrenals have recovered - but probably not as long on Pred as you [in the main] - when our illnesses PMR and/or GCA have gone into remission.

Your adrenals may look normal, but a simple blood test will give you a better idea of whether they are capable of working to any degree…but not necessarily that they are working.

Have a look at this link re adrenals - but to nudge them into life you do need to reduce slowly - try and hurry them and you are likely to have serious insufficiency issues - all the best

healthunlocked.com/pmrgcauk...

[Bopants in reply to DorsetLady]

Thank you, the plan is to reduce to 4mg & then have another short synacthen test to see whether or not there has been any adrenal recovery. I am doing this with the guidance of my rheumatologist who is taking advice from an endocrinologist

[DorsetLady PMRGCAuk volunteer in reply to Bopants]

O.5mg at a time, and one of the slow tapers we always recommend…. Either of these- whichever takes your fancy -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Bopants in reply to DorsetLady]

This is very helpful, thank you. I been been splitting the dose into 2 for some time, and this works well for me. At 5 mg I was having 3mg in the morning and 2mg at night, this was better for me than having 5mg in the morning. It was recommended to me as a way to spur my adrenals into life. Is this something other people have tried, that you know of?

[DorsetLady PMRGCAuk volunteer in reply to Bopants]

Some people split their doses anyway to help their PMR… but whether it makes any significant difference in nudging adrenals I really don’t know… Never did it myself..

[Bopants in reply to DorsetLady]

It kind of makes sense to me, I’ll keep going with it…

[PMRpro Ambassador in reply to Bopants]

What time are you taking the night dose? The critical thing is to have a very low level of corticosteroid in the blood around midnight as that is what activates the trigger to the adrenal glands to produce cortisol next morning to prepare for the day ahead. If you are taking that 2mg late evening, then there may be enough around midnight to not flick that switch and the morning cortisol remains low.

[Bopants in reply to PMRpro]

That’s a good point, thank you. I have been having it quite late, maybe 9pm, I’ll have it earlier from now on, would around 6-7pm work?

[PMRpro Ambassador in reply to Bopants]

As early as you possibly can - but do you REALLY need to split the dose in that way? In PMR many split to improve their morning stiffness because the antiinflammatory effect isn't lasting the full 24 hours. The ideal time to take pred for morning stiffness relief is 2-3am - and that not only sorts the morning problem but also ensures the lowest possible level at midnight.

[Bopants in reply to PMRpro]

I did find a noticeable increase in discomfort when I tried to take the full 5mg in the morning, and I was surprised, I’ll take the second dose much earlier in the day in the first instance, thank you.

[PMRpro Ambassador in reply to Bopants]

Some take about 2/3 in the morning and the rest sufficiently later in the day to extend the effect to 24 hours. Sometimes lunchtime is late enough.

[Bopants in reply to PMRpro]

Thank you, I’ll try 3mg in the morning & 1.5mg around lunchtime

[Bopants in reply to DorsetLady]

I have another question please. Is there anything that can help support the adrenals as they (hopefully) begin to work again?

[DorsetLady PMRGCAuk volunteer in reply to Bopants]

Unfortunately not really - just time, good diet and very slow taper….

[Bopants in reply to DorsetLady]

Thank you!

[PMRpro Ambassador in reply to Bopants]

Not really - don't believe the hype you will find in a google search!! The only thing that stimmulates the adrenals to produce the cortisol is as low a level of corticosteroid as possible in the blood at about midnight. But there are several steps from the first switch that is flicked to the end product and all of them have to get their act together. DL say it: time, good diet and slow taper/

[Bopants in reply to PMRpro]

Thank you!

[PMRpro Ambassador in reply to Bopants]

Unlikely - and actually, they can probably get away with doing basal cortisol alone initially and only when that is improving go to the effort and cost of a synacthen test.

[PMRpro Ambassador]

Hi and welcome - hope we can help!

To be fair, 16 years is a long time to be on enough pred to suppress adrenal function and then expect them to wake up and leave their beachbum life behind! I do know of people on pred for well over 10 years who did manage to get off and manage a decent standard of activity without.

But as DL has explained, you are going to have to take it slowly and really you should be under the care of an endocrinologist while doing so to keep an eye on you for any sign of an adrenal crisi, Make sure you know and can recognise the signs of an impending crisis and what to do (if in doubt, call 999 and tell them potential adrenal crisis) and you should be provided with a rescue pack which, when trained, you or family can administer and otherwise the paramedic can use. Sometimes if you start to feel unwell, confused, dizzy for example, taking some pred and sitting quietly can be enough to avoid trouble. It is particularly a risk if you overdo things or are under a lot of stress. You need the steroid cards now even if you didn't carry them before.

An endocrinologist may want to switch you to hydrocortisone if you don't need the pred to manage your disease - in theory HC is better to encourage return of adrenal function. It too is a corticosteroid and is used for adrenal insufficiency management. In theory the side effects should be similar but a lot of people who are well settled on pred find the switch difficult - pred can also be used to manage andrnal insufficiency and some people ask to switch back or never venture onto HC in the first place.

[Bopants in reply to PMRpro]

Hi, thank you. I’m going to try to reduce pred very slowly in the first instance. In the past I reduced too quickly & felt really awful, so I know the signs to look out for - never again!

[PMRpro Ambassador in reply to Bopants]

We do have a lot of stuff about adrenals and tapering in our FAQs that you may b=find helpful and we are past masters at tapering approaches which do make it less uncomfortable. There is almost always someone around though maybe fewer in UK night hours, not so many from Oz and the US lately and the longest you will wait for advice or a listening ear is next morning. Delighted to lend a hand.

I'd say at this stage and given the situation not more than 1/2mg at a time and spread it over AT LEAST 2 months to start - later you may need double that. This isn't going to be quick or easy - but you may succeed if you go slowly enough.

[Bopants in reply to PMRpro]

Thank you for the encouragement, yes, I understand that I have to take it very slowly, I’m really committed to doing it, here’s hoping!

[PMRpro Ambassador in reply to Bopants]

We're here for questions and support - it will be interesting finding out how you get on. All the best

[Bopants in reply to PMRpro]

Thank you!

[SnazzyD in reply to Bopants]

For what it’s worth, I wasn’t on Pred as long as you but it took 18 months to get from 4.5mg to zero and then another 18 months to feel reasonably confident that my adrenals were up to most things. At 4mg my Synacthen test wasn’t very special but by 1.5mg it was more or less normal but unreliable, especially when sustained increased output was required. At 2 years after stopping Pred I had Covid very badly and had a crisis that had to be treated with IV hydrocortisone. Hasn’t happened since.

[Bopants in reply to SnazzyD]

Thank you, I’ll try to reduce to 4mg in about a month. When/if I get to 2-3 I’ll ask for another short synacthen test.

[SnazzyD in reply to Bopants]

In one go?

[Bopants in reply to SnazzyD]

No, I’m just reducing by 1/2 mg every month-6 weeks, depending on how I feel, so it will take a while!

[cranberryt]

How did they diagnose seronegative RA? And how did you end up on prednisone? I ask for three reasons. 1) Many rheumatologists refuse to dx PMR and instead diagnose seronegative RA in its place and 2) prednisone is not generally used to treat RA. 3) How do you know you are in remission? Even 1/2 mg of prednisone can be enough to manage symtpoms. Some think remission means no symtpoms while on prednisone but you actually have to be completely off prednisone with no symptoms for a while to know if you are truly in remission.

Sorry for the questions! I have just been around long enough to be skeptical whenever I see a seronegative RA diagnosis and suggestions of remission while still on prednisone!

[PMRpro Ambassador in reply to cranberryt]

This is a rather different situation. Pred is often used in RA at a low dose for morning stiffness but Bopants is now on a biologic which should deal with that - and the pred becomes redundant (hopefully) so can be stopped if the adrenals play ball that is!

[Bopants in reply to cranberryt]

Hi, I had a motorbike accident when I was 18, I was a passenger & ended up getting my right knee squashed between a big bike & a big rock…. I should be walking around with a slightly troublesome knee, perhaps…. Instead it seems my immune system went haywire & attacked most of my other joints. It was decided it was arthritis, but I tested negative for rheumatoid factor - hence seronegative. I have had foot, knee, & shoulder surgery, also a double hip replacement because of this. My job requires me to get off steroid if possible, which is why I have started Adalimumab. Unfortunately the rheumatologist who put me on steroid did not mention the issues that go along with it - it was presented as a ‘magic bullet’ - wish I could go back knowing what I know now, I would never have touched the stuff…

[Wizards]

Hi BopantsI was on prednisone for just shy of 9 yrs. I've been off for 1yr 3mos and just now feeling better. For some it takes even longer.

I never had flares however even a 1 mg drop at 18mg I could feel it so after each drop it wasn't unusual to stay for 2-3 mos before continuing.

I stayed at 10mg for aprox 1yr old method to help adrenals but if I was ever to redo it I would have stayed at 5-4mg stayed there for a yr. At 5 mg I was struggling with exhaustion from there down and it just got worse.

I was having easy drops, no pain just exhaustion from adrenals.

I too have had to split my doses from day one. My afternoon was at 3pm and I did a 50/50 split.

I hope this helped, good luck

[Bopants in reply to Wizards]

Thank you, I just have to be patient & keep going!

[Bopants]

Thank you, I wish I had found this site earlier, you guys have some great advice, I plan to stay at 4.5mg for at least 6 weeks, before dropping by .5 (maybe even .25). I have made the mistake of dropping too fast in the past & have the whole range of withdrawal symptoms, sweating, shaking, nausea etc - never again!

[PMRpro Ambassador in reply to Bopants]

We have plenty of practice!!! After the long time you have been on pred, you may never manage it without the signs of adrenal insufficiency manifesting at some point and it will take a long time. But we can have a go!

[Bopants in reply to PMRpro]

Thank you, I will give it my best shot!

[Wizards in reply to Bopants]

As I mentioned I stayed after each drop until I felt well could be 3-4 months. I personally wouldn't put a time frame because of adrenals. I never yoyo'd but as I mentioned getting off was hell because I pushed.

Never again is my advice. If you need to stay a year or less what is that in the scheme of things 🤔.

[Bopants in reply to Wizards]

That’s true, I’ll definitely be guided by how I feel rather than the calendar😁

[Grammy80]

Hi Bopants, I just saw your post and hope to encourage you. When I was diagnosed with GCA in 2019, it was 'raging', to quote my rheumy. Initially, I took 125mg per day for about two months, then they added TCZ (another -umaub), and it was lowered to 80mg per day and the injections. It wasn't until 2024 I got to 10 and stayed there. I began reducing it until I go to 5 and then slowly, slowly......I am now on .05 and the weekly injections. So yes, slowly, it can be done. There were times I thought my adrenals were back and I would overdo ...I found I had to work with them slowly and deliberately. I'm in the States, and if I do get off pred, I will continue with Actemra. Yes, it can be done. I must acknowledge that I'm not the same girl I was at 79, but I try to use my energy for what I love...and then rest. Yes, you can do it💞💞

[Bopants in reply to Grammy80]

Thank you, that’s great to know. I’m sure that I can do it, I’m very stubborn, but also very impatient, so that’s the part I need to rein in!

[Grammy80 in reply to Bopants]

Be kindest to yourself.....💞

[Grammy80]

Way to go....some times we have to just yank those 'big girl pants on' and give it our best shot... not a soul could ask for more. Good luck, I know you can do it!!!💞

[Bopants in reply to Grammy80]

Aww, thank you! X