Reducing steroids causing mini-flares?

[Sandy1212]

I have been reducing steroids for 3/4 of a year now and ive noticed that i get mini-flares basically 1-2 times a month minimum. I was wondering could the fact that my steroids are being reduced cause this?

[Ladyatlunch]

It is quite possible. The lower doses are more difficult to wean down. Apparently the body naturally produces its own ‘steroid’ which is the equivalent of around 7mg Prednisone. If you take a dose higher than this then that knocks off the body’s own production. When weaning below 7mg the body then has to start producing for itself again and that’s what makes it a difficult and slow process. There’s probably a better way to explain this but it’s my best effort at this time in the evening!

Before reducing again explain your symptoms to your consultant and take it from there.

[Sandy1212 in reply to Ladyatlunch]

Thank you ladyatlunch! Im actually on 7mg at the moment and this months mini-flare has probably been one of then longest since they’ve been reducing so it could be my body getting used to producing its own steroids again!

[PMRpro]

It depends a lot on what dose you started at and how slowly you have been reducing. Obviously you have been on a high enough dose of pred long enough to lead to suppression of adrenal production - that takes just a few weeks at high doses, longer but still within months at doses as low as 10-15mg.

When tapering it is advised the step down should never be more than 10% of the current dose and that should happen not more often than every 3-4 weeks. Some people don't even cope well with that. Too big a step down often results in the patient developing steroid withdrawal symptoms - which rather confusingly often resemble the disorder for which you are taking the pred. But you also were given the pred to help reduce the lupus inflammation and symptoms - if you aren't on enough to do that and other medication hasn't taken over that function then you will have flares. It is difficult to say which it is but to comment in more detail I'd need to know more about how you have been using the pred.

[Barnclown in reply to PMRpro]

🤩 the voice of experience + professional expertise! WELL SAID: thanks for putting this ultra clearly & concisely for us...every time you explain this i’m super grateful. Especially cause I rely longterm on therapeutic daily 10mg pred, have non-drug-induced early onset osteoporosis (in longterm treatment: IV zoledronate) and have had various fractures in the past 6 years (toe, hand, lumbar vertebrae). As I understand it, I WOULD be on even higher dose longterm daily dose IF my rheumy didn’t have me on longterm daily combined therapy steroid-sparing immunosuppression meds (hydroxy & myco).

Over the years, my lead consultants in immunology & rheumatology never suggest I try to taper my pred dose down...even though now they tell me that my inflammatory marker blood results are reasonably stable...am guessing this is because these consultants are shrew enough at interpreting my broader signs & symptoms generally...ie their assessment is that I continue to need ALL these meds in order to be as relatively stable as I am....especially as my AID was infant onset & now multisystem inflammatory old age issues are adding to my AID-burden. 😬 Does that make some sort of sense to you PMRpro?

❤️🍀❤️🍀 Coco

[Barnclown in reply to Barnclown]

PS 💐 apologies Sandy: for jumping in asking PMRpro my own question via your post. Am V glad you posted & will follow your discussion with interest! For what it’s worth: I do flare when any of my meds are reduced or paused...eg during surgeries, infections etc rheumatology tends to take me off myco for a while, and sometimes even hydroxy...but not pred (so far)❤️🍀❤️🍀 Coco

[Sandy1212 in reply to Barnclown]

No need to apologise! All questions to other people are welcome! Well i hope reducing pred never makes you flare! ❤️

[Barnclown in reply to Sandy1212]

👍☺️ ...I hope so too: every time am off to see my rheumy I DREAD she may suggest trying to taper my pred down...the dread is cause stuff keeps happening (fractures, infections, procedures) so my bod is always in a state of reaction/recovery with my AID/PID equilibrium unbalanced, making my chronic neuro-cerebral & vasculitic stuff especially act up (ie mini-flaring!)and the last thing I need is full on lupus flare 🤷🏼‍♀️....hope things go smoothly as poss for you...please keep us posted ❤️🍀

[Sandy1212 in reply to Barnclown]

Hey Barnclown! Luckily they have the sense not to do anything while you are having other symptoms!! Thank you and i will and i hope the mini-flares dont progress for you❤️

[Barnclown in reply to Sandy1212]

👍 I think they aren’t doing anything cause although my bloods seem stable, my chronic multisystem CTD/AID/PID clinical stuff keeps having neg responses to this constant parade of multisystem critical incidents & investigations/procedures & stuff like infections flaring...and time has proven my AID+PID+GASTRO combined meds inc the 10mg are vital to restabilising 🤷🏼‍♀️. Unfortunately 😏 all the mini flares do seem to be progressing my stuff eg the peripheral neuropathy especially 😝...but am SURE it’d ALL be a lot worse without 10mg pred...and SO FAR I’ve managed to avoid higher doses ❤️🍀

[PMRpro in reply to Barnclown]

IMHO - EXACTLY!! Good doctors you have - and not terrified of using pred as a part of an overall strategy that they have found works. And when you have that - why rock the boat?

[Barnclown in reply to PMRpro]

😆 EXACTLY...YEP: CAN’T BELIEVE AM GETTING AWAY WITH THIS 🤷🏼‍♀️...have another rheumatology appt coming up soon: trying hard not to let anxiety levels increase eg about some rethink re my pred coming up, eg increase to myco dose etc 😬...especially re the crop of scoliosis osteoporosis grade 2 lumbar vertebral fractures last June’s VFA BY DXA discovered....

[Sandy1212 in reply to PMRpro]

So two years ago in December when i was first diagnosed i was originally put on 55mg which was tapered down and around march i was down to 7.5mg but then they had put me up to 15mg then 25mg as my platelets dropped. I was also put on rituximab in june. Later In june i had a really bad flare and i got put up to 60mg i was tapered down until i reached 20mg in august. I was on 15/20mg from end of August to end of September, then reduced 2.5 mg every two weeks until November i was on 10mg i was reduced 1mg every 3 weeks until December which brought me to 8 mg then in 5 weeks 7mg which is my current dosage and this would be my 6th week (my appointment is next monday. For immunosuppressants i have been consistently on azathioprine 100mg from end of September of last year (i was on 15/20mg of pred). Hope this makes sense!

[PMRpro in reply to Sandy1212]

I would say they are trying to taper you too fast at the lower levels - 2.5mg every 2 weeks is a lot. But those changes in dose every few weeks could be the cause of the apparent flares as the dose changes. The lower you get, the greater the percentage change even if the steps worked before. Bitter patient experience finds that moving too fast just makes it worse.

[Sandy1212 in reply to PMRpro]

I will speak to my drs next week and emphasise what’s been happening, whether that means looking into some more specific blood tests or reducing me even slower ill see what they say. Yeah i also have a bad experience with tapering me too quickly, i ended up hospitalised and before that they said they were reducing me slowly and all is good. Thank you so much for your help! ❤️

[PMRpro in reply to Sandy1212]

healthunlocked.com/lupusuk/...

Have a look at this - we use it on the PMRGCAuk forum and it really does help reduce the discomfort of reducing the dose.

[Sandy1212]

Hey twitchylet! I know getting down to zero is the plan, i tell them every time my symptoms. My last appointment they a whole A4 paper of my symptoms bullet pointed and they told me they were happy😒. I know my last haem appointment they said my ESR was raised (and it was last time) but they weren’t worried because that marker isnt as important as CRP which was normal

[PMRpro]

Unfortunately not! But it is a recommendation from top experts in the field. I have seen a paper years ago but don't have a reference. However, this

aiunited.org/glucocorticoid...

mentions the 10% figure - 20% is OK at higher base doses. But they emphasise that it is a very individual thing and the tapering MUST be adjusted for the patient. Some sail all the way down to 5mg at 2.5mg a time and then do 1mg at a time with no bother. Others struggle at 20mg to do more than 1mg. And when they have been flaring in the past and get into a yoyo pattern with their dose it can become increasingly difficult.

[Treetop33]

Yes I've had a similar experience - it is really tough trying to wean off. There are some wise words in this thread.

Currently on 5mg and even dropping down to 4 causes major problems. The docs want me to come off altogether and say my Lupus markers are in remission. But it doesn't explain why I feel so crap (often 3-4 weeks after I successfully tapered down). The docs say its fibromyalgia and I'm using steroids to get energy. Not totally sold on that one!

I think I could probably do it if I had nothing else to do in my life, hence complete stress reduction, but I have a young child and work.

[Sandy1212 in reply to Treetop33]

Its good to know other people have experienced it! Im so sorry you have to deal with this whilst having other things to cope with, i do hope that changes soon! X

[Jmiller623]

Hi Sandy! Reducing steroids can definitely cause your symptoms to come back even if tapered really slowly. It can take months to years for your adrenal system to recover after being on such high doses of steroids for so long. It is interesting that you’ve been on azathioprine, had rituximab and are having issues coming off of steroids. This points more towards adrenal insufficiency problems or underlying infection rather than true blue lupus flares since azathioprine/rituximab is a pretty good immunosuppressant.

For comparison, I’ll give you my experience. Was in high dose steroids 60mg taper to 0mg over a course of 7 months. I was bridging to Plaquenil and azathioprine at the time. When I finally stopped the steroids, I felt completely awful for at least a month and went to see endocrinology. My adrenals has recovered nicely after 1.5 months with normal ACTH and cortisol. I did find out that I was allergic to azathioprine once I came down on the steroids. It caused hepatitis and cut my platelet number in half so I had to stop it. The allergy was masked by steroids so this is something to consider as well with symptoms and platelets.

Unfortunately, I have yet to meet someone who came off of high dose steroids with no trouble at all. I have now been off of them for almost a year and only on Plaquenil and a slew of other meds 🤞. I did taper by 2.5 mg every two weeks at the end. It was suggested to taper by 1 mg every 2 weeks once I got to 7 mg. I didn’t have small enough pills so I did 2.5 mg which was probably too quick but I wanted off of them at all costs since they were causing major shortness of breath, bloating and palpitations.

I wish you the best of luck. Coming off steroids is hard no matter what way you do it. You will have a horrible month or two but stay strong and stick with it if you really want off of them. Some people get to 5 mg and just can’t go any lower. 🤷‍♀️ Whatever makes you feel better with minimal risk/danger is best course of action. Some docs push stopping steroids completely with such force, they focus on the goal and forget about the patient. Make sure your providers know how you’re doing on the taper. Sometimes it’s really hard to tease out what’s working with or against you towards the end of the taper.

[PMRpro in reply to Jmiller623]

People ARE able to get off high dose steroids without great difficulty and I know several - but they don't have lupus, they have an autoimmune vasculitis. But without doubt the secret is to taper very slowly and carefully so you don't allow flares, not denying that the dose you have just gone down to is too low. Too many patients - and, above all, doctors - are in too much of a hurry to get off pred. The tortoise wins the race!!!

[Jmiller623 in reply to PMRpro]

Hi PMPro. I don’t purport to know exactly what will work for Sandy. She may still have problems even with a tortoise speed taper because it may not be coming off steroids that is causing her problems. I am careful to not talk in absolutes. I speak in experiences. Even if people get off steroids with no trouble, this is not Sandys experience so I’d rather not give false hope of a successful taper without a compete picture. Thank you for sharing your knowledge and experiences.

[PMRpro in reply to Jmiller623]

Nor do I - I am merely saying it IS possible to get off high dose pred without problems. And that is from my experiences over over 10 years in the PMR and GCA field with hundreds of examples to hear from.

[Barnclown in reply to PMRpro]

👍 My husband’s early onset severe Crohns is one such example:

after 30+ years of daily pred (often at high dose for long periods), multiple bowel resections, peritonitis etc & persistent GI disability, he tapered off pred slowly over 2 years via a method very like that you’re sharing here....having tried & failed to get off pred successfully using their faster rate of pred taper, his NHS medics & their lab tests insisted he had pred-induced incurable adrenal insufficiency segueing into failure.

He refused to accept his medics’ verdict. He insisted on trying an ultra slow pred taper and succeeded. He did, though, have to take oral bisphosphonates for 18 months or so for osteoporosis. Then he was discharged by our NHS univ hospital Gastro IBD clinic. Apparently his crohns is in remission. But of course he will always be managing significant ongoing disability caused by all that lifesaving surgery

That was 10ish years ago. since then he has proven his adrenals are fine: in his early 60s he has proven to be consistently & actively fit by solo-planting 20,000 native trees on 37 acres around our house in only 5 years, and ever since being out there in the Wood at least 4 days a week doing maintenance (the other 3 days each week are devoted to other activities: he is kinda like an Everready Bunny). 👏👏👏👏

[PMRpro in reply to Barnclown]

How is my tree? I loved his wood xxxxxxxx

[Barnclown in reply to PMRpro]

Your tree is growing like topsy...& the badgers are still ‘visiting’ it all the time! ❤️🍀❤️🍀

[PMRpro in reply to Barnclown]

Obviously good for plant growth

[Barnclown in reply to PMRpro]

😆👍🦡😍

[Sandy1212 in reply to Jmiller623]

Thanks for posting your experience, i will definitely keep in mind that it could be something else causing it, that actually didnt occur to me so thank you for that! I will speak to my doctor at my appointment ive got both haem and rheum next month so hopefully one of them will have some answers!

[Lily77]

Thank you so much for your post which has triggered so much helpful information. With my very best Lily

[Cas70]

This happened to me and so I slowed the reduction down, on the advice of my Consultant. We decided to leave it at a constant 2mg daily. I am elderly so quality of life is vital versus any long term damage. Good luck