I have been on prednisolone for 12 years because of Lupus, I am on 5mg daily. Two years ago I started Sarilumab SC injection once a fortnight which appears to be working . I really want to come off prednisolone, to try and get some weight off. My Consultant was going through my drugs once and he said you have been on steroids for a long time and then said Oh you might as well stay on them. Has anyone on long term steroids been able to come off this drug and how long did it take you? I will be seeing my Consultant face to face for the first time in 2 and a half years next week. So I am putting together some information in the hope he will at least give me a chance to try and come off them. Many thanks in anticipation.
Steroids _ I hate them!: I have been on... - LUPUS UK
Steroids _ I hate them!
The main problem after being on pred such a long time is that your adrenal function has to wake up again. 5mg is a strange dose there, if you were on a higher dose previously adrenal function is suppressed to reduce the production of cortisol, the body's natural corticosteroid, which is essential for your body to function properly. 5mg is still enough to maintain that suppression for many patients but not low enough that your body thinks it could do with a bit more. The only way is to taper the dose VERY slowly - on my home forum where everyone is on pred and a lot higher than 5mg we say 1/2mg at a time and taking at least a month, often 2 months, for each half mg. If you are feeling well on 5mg, reducing that dose is likely to make you feel more fatigued than you do now. And it is a very slow process.
However - if your aim is to get the weight off, that can still be done while still on pred, Many of us on the PMRGCAuk forum have been able to lose pred weight, I managed 35lbs while I was still taking 10-15mg pred and currently have lost over 4kg since reducing the pred from nearly 20mg to 5mg because I too am on a biologic like you, though a different one. The key to stopping pred weight gain and to lose what you have gained is cutting carbs drastically. Pred changes the way your body processes carbs and it encourages weight gain. Cut the carbs and you can lose weight. For some people, just reducing the pred dose doesn't automatically result in weight loss, you do have to be proactive. To lose weight I have to get to very low carbs, almost keto level, and the loss is slow if I don't. But it does work,
Most important is to cut processed carbs and added sugar. You need to limit fruit, there is a LOT of sugar in lots of fruit, berries are the best to eat, bananas probably the worst! You also need to limit root veg like potatoes and sweet potatoes. Above ground veg is good, and salad leaves. You need to cut bread and other baked goods, rice, pasta and so on. It sounds hard but when the weight starts to come off, it will be its own reward.
I find this website very useful, clear explanations and pictures make it easy to see what is better to eat.
You don't need to join anything or pay anything if you don't want to - there are recipes that are accessible free, you get more if you pay. But once you understand what to eat and what not to eat, you can adapt your meals quite easily.
Good luck.
“My Consultant was going through my drugs once and he said you have been on steroids for a long time and then said Oh you might as well stay on them.…”🧐
===+=+=
Wrong.
No one stays/should stay on steroids forever!
He/she is wrong. I was on 2.5 mg/ day for a couple of months last year and I’m completely OFF them now.
Was diagnosed 2016/2017 with SLE, DLE, Lupus nephritis, SCLE, primary hypothyroidism, vasculitis.
My reducing dose was 2016 45mg /day for 2 weeks, 35mg/ day for 2 weeks, 25mg/ day for 2 weeks, 15mg/day for 2 weeks, 10mg/day for a month. By 2017 I was down to 5 mg /day for and then 5mg every2 days for a couple of months.
Complex IDK hence my consultant NHS nephrologist wrote it all done meticulously for me.👍👏
Excellent medic.❤️
Unfortunately I had a severe skin flare in 2022 so dermatologist upped Prednisolone to 15mg/day for 1 month only with a reducing dosage regime down to 2.5mg/ day. Everything calmed down January/February this year 2023 so no more Pred at all.
My adrenal glands BTW are working.👍
I’m still on MMF 2 G/day.
Trust this helps?
"No one stays/should stay on steroids forever!"
Possibly we SHOULDN'T but many of us do, either because of the need for them in their role as antiinflammatories in our disease or because of problems with adrenal function when there is little option - it is lack of corticosteroid that is the problem and it is essential to life and normal functioning of the body, Naturally it is in the form of cortisol, in its absence either pred or hydrocortisone are used.
Surely the poster’s medic should have tapered her dosage better rather than say: “you might as well stay on them…”? 🥹
It gives patients no confidence.
Further tests should have been carried out to assess and monitor the need for synthetic steroids ie if adrenal gland are functioning properly?🧐
Many lupus sufferers like myself have come off steroids and have been endorsed to do so!
Endocrinologists need to assess properly.
He should - BUT they don't know how to cope with steroids, especially when the patient has been on them a long time. And if he had carried out tests at this point, the result would almost certainly have indicated adrenal insufficiency which requires about 5mg pred as replacement therapy. QED ...
Endos say regularly that you cannot get a reliable result until the patient is at least down to 3mg, often even then they look dire and it is only at as little as 1mg that the results look encouraging. Even then, you are not out of the woods for up to a year after stopping pred altogether.
In the meantime, many patients complain of being so fatigued they cannot function, feel nauseated, all sorts of symptoms of adrenal insufficiency. And all that is more likely after so long on pred.
This is my bread and butter on my home forum: everyone is on pred, everyone aims to taper to zero. In terms of the disease most are likely to manage. But the longer you have been on pred for the illness - the harder it is. It can be done - but it can be an even harder road than the illness was.
To come off synthetic steroids doctors should ideally perform the short SYNACTHEN blood TEST which assesses whether the pituitary gland is releasing sufficient adrenocortiotrophic hormone (ACTH) which stimulates the adrenal glands to release vital cortisol.
The SYNACTHEN test will show whether the complex hormonal pathway between pituitary and adrenal glands is working as it should.
It’s not only about tapering the synthetic Pred intake. We lupus sufferers and others with AI disorders should have a full endocrine system evaluation as well.
For completeness for others reading this reply
"No, the synacthen test doesn't assess whether the pituitary gland is working. It assesses how much function the ADRENALS have. It gives a shot of synthetic ACTH (hence the name) which stimulates the adrenal glands to produce cortisol if they are able. But it doesn't provide reliable information in a patient currently on pred because the pred suppresses the production of cortisol. Most endocrinologists won't do it until the patient is down to 3mg or lower."
Hi,
Thanks for responding.
You’ve used text in quotation marks. Wondering who or where you’re quoting from?
A reference would be useful.
An NHS trust leaflet, perhaps?
I’m aware that with lupus the master gland, the pituitary gland and other components of our hormonal system may all be affected in different ways?
Thanks.
Me - I have written it 3 times in the thread for each time your incorrect version appeared. So I quoted me.
It has nothing to do with what organ is affected in what way. It is what the synacthen test is measuring. It does NOT measure pituitary production of ACTH, The test uses synthetic ACTH to stimulate the adrenal glands directly to see if they are able to produce cortisol which is what may have been affected by long term corticosteroid. It shows nothing about how the pituitary is functioning, that requires other tests.
Ok thanks!
As you say:
It’s to diagnose adrenal insufficiency:
nbt.nhs.uk/sites/default/fi...
SST:
“…The purpose of the test is to diagnose adrenal insufficiency. Under normal circumstances, pituitary ACTH stimulates the secretion of cortisol from the adrenal gland; Synacthen (a synthetic ACTH called tetracosactrin) has a similar effect. However, in patients with adrenal insufficiency, there is inadequate response.
In adrenal insufficiency, there is reduced production of hormones (both mineralocorticoids and glucocorticoids). The most common causes are treatment with glucocorticoids, autoimmune destruction of the adrenal gland, TB and adrenalectomy.…” etc
Hence the pituitary gland being the master gland which actually produces ACTH to stimulate the adrenals and other endocrine glands eg the thyroid (TSH) should also be checked out for its correct functioning!
[BTW this is an important point but worth restating] With lupus and other AI diseases any organ/organ system/tissue/cell organelles can be affected!?
It is the master, didn't say it wasn't. But the synacthen test does not measure pituitary function.
What does measure pituitary gland function if ACTH cannot be produced naturally?
Sorry, I wasn't quite accurate - it does partly measure it normally but being on pred is not normal. It needs several tests even in someone NOT taking pred - and the synacthen test IS one of them but when the patient is on pred it alone isn't reliable as the pred suppresses the production of cortisol anyway. That would be like having a central heating boiler AND a wood burning stove heating the same room and measuring the temperature of the room to see if the boiler is working.
patient.info/doctor/pituita...
is aimed at medical professionals but you can see the complexity of the testing in endocrinology. Not much chance of a non-endocrinologist getting their head round it!!!
Hi Ruby. I have had Lupus for over 30 years so have had a lot of ups and downs with Lupus and SteroidsThe first time I stopped I did it abruptly against medical advice. I had the notion I could cure myself and subsequently had the mother of all flares. I don’t recommend that approach. I have since tapered from 5mg to 2mg to 1 mg. Now I have been steroid free for about 8 months. No problems so far with constant monitoring through blood tests. I continue to take mycophenolate so my next task is to reduce the dosage. So my advice is talk to your consultant and see if you can tapper off the drugs. Good luck. Also of course listen to your body. It’s advice I should have taken many times but ignored.
Hi there. I haven't been on steroids for 12 years, but was on Fluoextine for 10 years after the GP advised I should try and come off them. I am no longer taking them since about May this year, but it was a long and at times, a very difficult challenge of about 2 years on and off, gradually cutting them down until I stopped. Tbh I don't feel that much better off them only from the point of view that I finally can accept (on most days) that I have mental health issues and have done for the last 50 years of my life due to familial circumstances beyond my control. I still react the same way that I did before taking them to situations, whereas before, they smoothed out the "massive" stuff. The only other thing that has happened is that I'm currently under investigation, thankfully, for heart stuff which may or may not be related to taking long term Fluoextine and coming off them or it is a Lupus related new thing, or nothing at all. I know each person, each medicine is completely individual, but if you are "ready" and don't be cross with yourself if you trip up along the way, I did, several times, then it can be done. My only other bit of advice is keep in touch with your GP, I didn't and he gave me a bit of a telling off. Whatever you decide is right for you. I hope that some of this helps and wish you very well with whatever and wherever your journey takes you. 🙏
Hi I too have been on steroids for about 13 plus yrs and currently on 14mgs (reducing from 15mgs slowly) I often have to increase for a flare up to about 20 or 30mgs approx every 3 months or so which is so annoying! I'm also on 25mgs mtx and leflunomide and hydroxchloroquine.My rheumatologist said that I will probably always be on steroids too. I've been on 5mgs maintenance dose b4 but somehow got up to 15mgs and stuck there for quite a while and if I tried to go to 10mgs my joints flared straight away.
I have recently joined slimming world and lost a stone in 8 wks so it is possible (and I really love to eat esp biscuits, crisps etc!) 😬 I know its difficult but it is possible. I'm currently losing between 1-3lb a wk. I go to the group every wk with my friend who is diabetic and we've both lost weight together.
With regards to stopping ur steroids it is possible u would just need to reduce them very slowly bit by bit so speak to ur rheumatologist and I'm sure they will give it a go u can only try it 🤷🏼♀️
My rheumatologist last time I saw him said 'ah, uve got steroid cheeks!' Oh thanks just when I feel self conscious about my weight cheers for that! So I'm looking forward to seeing him in November hoping to have lost 1 1/2 stone 😊
Was it the chubbiness he meant - or the roses? Needs a reality check though - we have enough to deal with without rude rheumies making personal remarks!!!!!
Chubby cheeks, yeah he said it very matter of factly I thought oh yeah kick someone while their down why don't u! As if we don't know how we look, one of the practice nurses I see for my bloods always points things out too like how tired I look or red patches on my face shes just one of those people! 😠 so I try to avoid her x
To come off synthetic steroids doctors should ideally perform the short SYNACTHEN blood TEST which assesses whether the pituitary gland is releasing sufficient adrenocortiotrophic hormone (ACTH) which stimulates the adrenal glands to release vital cortisol.
The SYNACTHEN test will show whether the complex hormonal pathway between pituitary and adrenal glands is working as it should.
It’s not only about tapering the synthetic Pred intake. We lupus sufferers and others with AI disorders should have a full endocrine system evaluation as well.
As I said below:
"No, the synacthen test doesn't assess whether the pituitary gland is working. It assesses how much function the ADRENALS have. It gives a shot of synthetic ACTH (hence the name) which stimulates the adrenal glands to produce cortisol if they are able. But it doesn't provide reliable information in a patient currently on pred because the pred suppresses the production of cortisol. Most endocrinologists won't do it until the patient is down to 3mg or lower."
Hi rubybelle12
I was on 15 mg of prednisolone daily along with hydroxychloroquine and mycophenolate for SLE from 2015 - 2019. We reduced it gradually to 7.5 during 2019 and I remained on that until last year. My adrenal glands gad stopped working so I was referred to endocrinologist to reduce further. I was swapped to hydrocortisone and once we got down to 15mg daily my adrenal glands started working again. I have to say that unfortunately the result was every joint in my body became seriously enflamed. It was as if everything had been given a free rein to go wild. My fingers and toes felt as if they were on fire. I couldn’t lift my arms and my hips and knees were super painful. My rheumatologist has left me on 15mg of hydrocortisone and added amitriptyline to the mix to control the pain. That plus four hydrocortisone injections in hips and shoulders has had some effect.
I hope this helps.
Sending hugs
Bee
Hi rubybelle12
I have been on steroids for 20 years I was on 15mg for a long time then 10 mg and now I’m having rituximab infusions and have got down to 5mg. My consultant did a test to see if I was producing cortisol and it seems I am. But I just can’t get down to less than five. When I reduce further I have a real shortness of breath and my lungs start filling with phlegm, my knees swell as well as my hands and wrists. To me it’s just not worth putting myself through this everytime I try but we are all different and you have to do what’s best for you. Good luck😉
I see Dr.Petri at Hopkins-pretty well known in the lupus community and her main point is that steroids shouldnt be used for lupus as they have more risks than benefits when used longterm. her main point is use plaquenil and immunosuppresants long term instead. With that being said you would have to get off this veeeeery slowly with doctors guidance as doing so otherwise would be very dangerous.
To come off synthetic steroids doctors should ideally perform the short SYNACTHEN blood TEST which assesses whether the pituitary gland is releasing sufficient adrenocortiotrophic hormone (ACTH) which stimulates the adrenal glands to release vital cortisol.
The SYNACTHEN test will show whether the complex hormonal pathway between pituitary and adrenal glands is working as it should.
It’s not only about tapering the synthetic Pred intake. We lupus sufferers and others with AI disorders should have a full endocrine system evaluation as well.
No, the synacthen test doesn't assess whether the pituitary gland is working. It assesses how much function the ADRENALS have. It gives a shot of synthetic ACTH (hence the name) which stimulates the adrenal glands to produce cortisol if they are able. But it doesn't provide reliable information in a patient currently on pred because the pred suppresses the production of cortisol. Most endocrinologists won't do it until the patient is down to 3mg or lower.
Hi Rubybelle. Well as you can see everyone has a different story about how or why they started prednisone. Pain is personal and so is everyone’s coping skills with it. Also there should be no guilt about anyone’s educated choices to help having quality life. I’m with you, I don’t like taking my 3 mg dose. So low and I will try again after the holidays to get to 0. I know there are others out there like me who have spinal/neurological disorders too and just that tiny 3 mg helps. My Rheumatologist doesn’t get this. My neurologist does. Good luck. Slow and steady. Watching bad sy fy and short walks, restorative yoga, swimming granny style and real dark once a month chocolate (1ounce), meloxicam RX NSAID all help. 🫠
I took steroids for six and a half years. It was a nightmare coming off them. I think I reduced over six months (although the dose was a lot higher than 5mg to begin with). It took a long time to 'recover' after I had stopped, and I also found it very difficult to lose weight. Wouldn't go back though - I have now lost the weight and am VERY firm with anyone who wants to diagnose steroids. Good luck with your attempt.
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