I've been taking steroids since September 2013, when I was officially diagnosed with SLE (CNS). After years of various doses depending on the severity of my condition, I was told that I should continue on a "maintenance" dose of 5mg and NEVER to attempt to drop below this amount.
I'm really hoping that you lovely people can help me out here as I'm struggling to find any definitive answers on what the reason(s) would be that my Rheumatology clinician/department (in the NE of Scotland) would recommend continuing steroids (ad nauseam), albeit at a low dose.
I'm completely aware that rapid withdrawal can lead to adrenal crisis but I know of other lupus sufferers in other Health Boards ( e.g. Tayside) in Scotland who have been encouraged and supported to end dependency on steroids, despite taking them for the same amount of years, and are now no longer taking any Prednisolone.
I'm trying to establish if this clinically necessary advice or merely a reflection of an NHS can that no longer afford to monitor you in dropping below your body's natural ability to produce it's own adrenaline.
Prednisolone has wrecked my body. My skin is paper thin and splits occur often and unpredictably. I bruise so easily in areas which could not possibly have been in contact with random surfaces - e.g. underneath your upper arm! From my research, I've concluded that this is undoubtedly due to long term steroid intake.
Unfortunately, my naive trust in my current rheumatology care has been severely compromised by "forgetting" now on two occasions to arrange essential biologic infusions and so I'm now questioning everything.
I'd really appreciate any feedback, particularly from people in Scottish Health Boards as there may be different clinical guidance in different areas of the UK.
Thanks for any replies.
x
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lupieibbie
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Hi there that does sound extreme - I am also on steroids and have been since 2006 - but methyl prednisolone. What other drugs are you on? do you take any vitamins and minerals for your condition. If you could let us know.
Really appreciate your reply, posthinking01. Thanks.
I'm intolerant of all oral DMARDS but have been on 6 monthly infusions of Rituximab since 2016 - which no longer seem to be having the required effect on my condition. I'm also taking D3/Calcium daily and alendronic acid for osteoporosis. I could be wrong but I don't think continued use of steroids are any friend of your bones.
I also have Sjogrens and Raynauds for which I use topical treatments.
Feeling really low, physically and mentally, at the moment as I'm sleeping up to 14 hours a night with no benefit to energy levels, in daily pain and losing hope that this might get better. Pretty much an existence rather than a life.
Oh bless you - been there - have you had your thyroid checked because I had problems with thyroid and once I got on medications a lot of the Lupus symptoms were tolerable. You sound like you have adrenal insufficiency - low thyroid hormone - can you get any tests done - tell the powers that be you are sleeping the clock round - it is not right - it is not fair and you are not alone. Try taking some vitamin C for your adrenals - I don't like calcium it makes me feel achy and unwell - why don't you try for a couple of days coming off slowly and see if your tiredness improved - calcium can thicken the blood which would make you feel rotten.
Thanks so much for your kind words. Sorry about the delay in replying - everything is a challenge at the moment. I'm waiting for my Rheumatologist to let me know when my next infusion will be. Hoping that it'll give me some respite. Apparently, the last tests done show that my thyroid levels are "fine" but I'm going to try replacing the D3/calcium with vitamin C to see if that makes a difference. Take care and stay well x
Hi Lupieibbie. I’m in Lothian health board area and have SCLE so I see a dermatologist in Edinburgh. Once my condition was under control she encouraged me to try and get off prednisolone. Her reduction plan of 5mg a month was too much for me but we are lucky to have a lupus nurse based in Edinburgh. She suggested a very slow reduction of half a mg a month. It took me two and a half years but I finally came off pred in October last year. The last few months I was only reducing by a quarter of a mg but I was determined to get off. I did have a mini flare while reducing but was assured a few days at a higher dose would work (it did) and I could go straight back to where I was. I now keep some pred handy just in case of a flare but up to now I’ve been fine. I hope this helps and you can discuss it with your consultant. Good luck.
Many thanks for this, Barbara17, particularly as you live in a different Health Board area. It suggests to me that this continuation of "maintenance" is specific to my HB area (or maybe even only my Rheumatologist) and is not a clinical necessity.
I hope that I might hear from someone else in the Grampian area who is being treated by another Rheumatologist in the Department.
It really depends. Some of us cannot ever come off corticosteroids and others are able to. The key point to find out is if it's a maintenance dose for suspected adrenal insufficiency, or to aid your lupus treatment. 5mg is no longer the accepted standard maintenance dose for adrenal insufficiency (as it used to be before they found the body doesn't need that much cortisol daily) so it might be the latter reason. Definitely worth clarifying and discussing. If it's the latter then it's about looking at your overall treatment plan to counterbalance the pred use.
If it's the former, you can normally be reduced very very slowly by half a mg (or less - which I did) until you hit about 3mg. This will depend on weight etc. At that point they can do an SST to see if your adrenal glands are 'waking up' or if they've been permanently damaged. If they are damaged then hydrocortisone can be used instead of prednisolone.
I was on high dose prednisolone for a long time while we settled my lupus treatment, and it caused adrenal insufficiency. I have failed all my SST's so will now be on steroids for life, with emergency injections and sick day dosages etc. If this is the case for you, definitely get an endocrinology referral to make sure you have the emergency protocols in place. I'm 29 and live in Glasgow.
Hi there I have been on steroids since 2020 with varying levels .. currently on 5 mg dose with hydroxychloroquine … but really want to come off steroids ..I tried 2 mg alone and I had flares .. hence the latest medication
Hi there, I have reduced to 5mg. My rheumatologist said this is classed as a homeopathic maintenance level. It’s about batting off the flares at this level of intake. We are all unique and different. Hope that helps.
I was in similar situation many years ago and when told by an eminent (!) Lupus specialist to stay on 5 mg for the rest of my life, I asked if he would say that to his own wife or daughter and promptly left him. I moved to another NHS hospital in London (it did take quite an effort) and found a wonderful doctor who helped me wean off. I am now on biologics infusion therapy. I do it weekly at home. I also take Hydroxy 200 mg daily. Prednisolone is the cheapest, effective thing they can give you, I think. It is genuinely insane to put a patient on steroids for a life time. I was on steroids on and off for over 12 years and it took me five years to get off but I have not been on it for the last five years! When I came down to 2.5 mg it took another two years to get off it completely. I was on 1 mg. for over a year. My doctor couldn't believe it. I will never get on it unless it is for a really serious flare and only for a short course. Hope you can change your doctor! Fingers crossed. I am so sorry that your body has suffered due to a long term Pred. But hopefully your body will find a way to get stronger once you start weaning off. Sending you a good wish and luck.
Oh Paprika, I would so love it if you could attend my Rheumatology consultations with me 😉 On occasion, I've ended up a weeping mess at appointments due to feeling so fatigued, frustrated at not being able to have any sort of tolerable life and feeling so helpless and hopeless.
I totally agree that steroids are the easy, cheap, default option that's too often continued beyond a point where they should be: hence, my post. At the moment, just getting a restorative biologic infusion in a timely manner is a battle I'm increasingly unable to find energy for. I loathe having to send an email to remind her, particularly as I'm all too aware of the pressures on medical staff since the pandemic.
I think a change of doctor would be best for me but I've got no idea how to even go about that in the Scottish Health system. I also worry about the possible implications of even asking the question if my only option is a different Rheumatologist within the same Department.
I hope you stay well and keep fighting the good fight against lupus 🙂
Your doctor (or the dept) is failing you for not giving you the proper and safer treatment you really need and should have had a long ago and please do NOT feel bad for them for the current situation of NHS. Of course I feel horrible for the way NHS is going however, your health comes the top priority to you and should be for your doctor too. You must fight for you (!!!) as no-one will fight for you. Clearly your doctor isn't looking out for you if prednisolone is being offered as a permanent solution regardless of its long term damage. Please stay strong and insist nicely and don't give up. I don't know what Scottish Health System is like but perhaps you can post in HU asking people in Scotland as to if anybody can recommend a good rheumy in your area. Good Luck!! 💪👍
I've been on steroids since 2010 and have had various doses depending on how I was feeling. I'm currently down to 10mg with the hope of going down to 7.5mg, 5mg and then 2.5mg. Not sure I'll ever be able to fully come off it as will need to fluctuate when flaring.
Paprika60 are you allowed to give the name of the wonderful Dr you found? I have a sneaky suspicion I know who this may be 😁
I am not sure if I am allowed...I go to Hammersmith Hospital. Do you? I thought you were on Biologics therapy. Did we not write to one another in the past? Perhaps I am mistaken. Hope you manage to reduce your steroids.
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