It’s a pleasure to find such a supportive and caring community for lupus warriors. I’m new, and services in Australia are limited.
My Mum had lupus, and I was diagnosed with SLE several years ago after years of pain and infections, following many years of major depression.
I managed on plaquenil and ibuprofen for a couple of years, but my Lupus worsened a couple of months ago. My rheumatologist prescribed prednisone which worked well in resolving the terrible pain I was experiencing. I felt the best I had in years!
Reducing prednisone has been really horrible. My initial quick reduction caused a return of severe flare, and panic attacks in the middle of the night. Both the pain and anxiety caused difficulty in breathing and panic. My rheumatologist has been unavailable, but I will talk to him tomorrow.
I have restarted the prednisone and am reducing at 2.5mg every 2-3 weeks. Currently taking 15mg. daily.
Does anyone have any experience or tips that help with prednisone reduction? Does anyone else feel like they are going insane when they reduce prednisone?
I wish all lupus warriors strength and love and would be so grateful for any feedback.
Written by
Colonial-girl
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Hi.ive been steroid dependant for over 7 years.you must reduce steroids very very slowly no more then 1mg a month .if you have been on steroids for some time you may need cortisol test to see if your adrenal gland has pulled its socks up and started working again.when I drop steroids I always have a couple of bad days and I don't drop again until I've adjusted to that drop.you may need something like hydroxy or mmf to keep the inflammation under control so you can come off the steroids.x
Thanks so much for your kind reply! My rheumatologist is often rushed but I will make sure I ask about that cortisol level test, and stand my ground on a long reduction of prednisone in small amounts. Wishing you, your family and those gorgeous springer spaniels everything good in life. Thanks for giving me strength at a scary time. Hugs from Sydney in hard COVID lockdown x
Thank you for the good wishes. So sorry you are back in lockdown. My 2 springers have kept me sane during our 3 lockdowns here.i was still able to get out as I'm rural and near beaches. ive only managed to come off steroids twice and on both occasions ended up in hospital as its my lungs that flare .I can't get below 7mgs .we always here for the scary times and the not so scary .keep smiling sending hugs to you and yours 🤗 xx
You have been so supportive SML just when I needed it! When I finally spoke to my rheumatologist today he was agreeable to 1mg reductions over months. But because he originally told me to do 25mg for a week, then 12.5mg for a week then cease, I had nothing but bad experience behind me. Lots of pain! You’re advice was so welcome. And I did have to remind him about doing blood tests! So THANK YOU my friend, I wouldn’t have asked if you didn’t point that out.It sounds like you have so many problems of your own to tackle- yet you have time and compassion for others. I wish you the best possible health in your battle.
My kin came from the North West of England. Generation after generation mainly from Christleton in Chester. I would so love to visit one day if this pandemic ever resolves. How wonderful you are on the coast, with rural surroundings. England is so very beautiful!
I live on a rural property too, in the foothills of the Blue Mountains. Having space is a relief during lockdown. The Delta Strain has taken off in Sydney and we are seeing deaths every day. So we are expecting to be restricted for possibly months.
Like many mine has been a complicated journey in which inflammation put me into heart failure in 2014 yet there was nothing wrong with me ! .I'm pleased I was able to help I'm thrilled if I can spare someone the unpleasant side effects of prednisalone drops. hopefully now you will fair better with the smaller drops.I'm in cumbria so live near mountains of a different kind but just as beautiful as your blue mountains. Yes the space certainly made a difference during lockdowns and my heart goes out to those who didn't have that luxury even though I'm cev I was able to go out once a day and not meet anyone else.
Deaths and cases have risen here but vaccine uptake is about 88% so hopefully the trend will change for the better soon .
Do stay in touch through your steroid drops .Big hug 🤗 xx
Hello and welcome! Good advice from SML, very slowly and in small amounts, drop no more than 10% of current dose. I find a pill cutter really handy to get an accurate dose, along with getting Pred prescribed in 1 mg and 2.5 mg tablets. Lots of help and support here - I hate reducing too - I get a really uneasy, unwell feeling which usually passes within a few days. Go easy on yourself and keep us posted as to how you are getting on. 🤗
Hi Colonial Girl, welcome to the forum! What a lovely picture for us lupies. As Spanielmadlady says, you need to reduce steroids slowly, especially as you get on lower doses and if you've been on them for some time. I'm also on 15mg at the moment and I find a 1mg reduction is liable to make me flare. I reduce by 1/4mg or even 1/8mg, alternating the reduced dose and the new dose on alternating days. Has your rheumatologist talked about other drugs you could add in? If you are flaring as you come off steroids it's likely you might need one of the immunosuppressive drugs as well as the hydroxychloroquine. Wishing you all the best. Xx
Hi Choccy. My rheumatologist told me to reduce in 1mg increments today. I have no idea why he initially got me to take 25mg for a week, then 12.5mg for a week- then cease. It nearly bloody killed me. I am so grateful to have had the feedback from all the wonderful lupies on this board. Thank you for caring x
Hi Titters! Thanks for your kind wishes, and advice. I love the wolf and butterfly graphic that represents our illness. I am a Boxer Dog girl. I grew up with a beautiful red and white boxer, and my daughters grew up with a boxer too. I couldn’t live without an animal companion and I love them all!
Hi Colonial girl welcome to the group - can’t give any advice but wanted to say hi - this is one extremely kind supportive group , we help each other out - best wishes xx
Hello svfarmer! It’s really kind of you to welcome me so warmly. I have felt really alone with my lupus, and as I mentioned- Australia has very few support services for lupus. So it is indeed a blessing to find you all! Take good care
Hi Colonial-girl I was given prednisone back in August last year and it took me until roughly 6 weeks ago to taper off of them. I reduced by 0.5mg every 2 weeks sometimes I had to reduce by a 3 week gap as the side effects were aweful. Since coming off them it's been hard as my body was still craving them. Apparently it can take months before ypur body gets back to normal. I wish you good luck coming off them just take your time.
Hi JCZW! Thanks for your kind input. I get what you say about our bodies “craving “ the prednisone after reducing. My rheumatologist suggested 1mg reductions today, but I won’t hesitate to make it a 0.5mg drop if things are too hard.I really appreciate your experience and advice, and blessings to you from Australia x
Hi Colonial girl, and a very warm welcome to the group. You have come to the right place for support, reassurance and a bit of fun along the way. It is lovely to have an Australian in our group. I grew up just south of Brisbane and my best friend I met here at college in Scotland married her Australian penpal nearly 25 years ago and lives in Sydney (Miranda) so we’ve swopped sides of the world. 😂 Anyway, I digress, but yes I’ve also been told to reduce steroids very slowly when I’ve had a flare. Hoping you feel much better soon, and I look forward to seeing more of you on the forum. Love the picture too. 😍 Take care. 🤗xx
Hey fellow Aussie! Brisbane is an awesome city. I spent part of my childhood in Gympie, and Queensland is deep in my heart. Thanks for your warm wishes! I am so glad to have found you all! The loving support has picked me up so much.I descend from the Stewarts of Perthshire and the Scrymgour Clans. I would love to see Scotland one day, can’t blame you for swapping sides of the world with your BF!
You will definitely hear more from me in this place of support. Stay safe and well- with love from me, the kangaroos, the noisy koalas that often wake us up and all the Australian nature that you grew up with!😘
Hi C-G, Our friends and neighbours in Thornlands were Stewarts (but of Irish descent, not Scottish) and they had family living in Gympie. Small world eh? My old school pal from Straddie (Stradbroke Island) still lives there but sadly all the bush has been cleared for housing estates as have the old banana plantations and strawberry farms. ☹️ So it is lovely to hear that you can still hear koalas which have become a bit of a rarity in Thornlands/Cleveland. Great to hear this forum has picked you up already 👍🏻 and I’m sure it will continue to do so. Joining it is the best thing I ever did and what I love, apart from everybody being so loving and supportive, is there is somebody available 24/7 because with members being all over the world somebody will be awake and willing to answer your query or concern at any time of the day or night.
Enjoying all the love from the 🐨🐸🦇🦘🦎🐠🐡🦑 as well as yourself. 👍🏻👍🏻 And love from me and some wildlife from the land of your forefathers 🦊🦆🦔🦌🦭🦀🦞. Take care 🤗😘xx
Bless you darl! Breaks my heart to think of Gympie being overdeveloped, because it was a natural wonder land when I was a kid. We have koalas because we border three amazing National Parks (Blue Mts, Wollemi and Yengo) but we still fight for koalas in other parts. I am a platypus girl. I adore them. My daughter works in education at Taronga Zoo so if you ever come home, if we are ever vaccinated here- I will send her to give you a personal tour of all our Australian gems. Hugs from across the equator. Thank you for your support and kindness ❤️
Oh no, I think I’ve misled you CG, it is the Thornlands/Cleveland District, nicknamed the salad bowl district when I was a kid, that has been over-devolved. I really don’t know whether Gympie has had the same treatment. Aww, that is lovely bordering those 3 fab national parks.👍🏻👍🏻 What a lovely job your daughter has and I’d love to have a tour of the Australian gems at Taronga Zoo.🥰 Have you ever been to the Lone Pine in Brisbane? My parents took us when we were kids and I loved it. I’ll never forget seeing a baby kangaroo that hadn’t made it preserved in a test tube. I’d never realised until then how tiny they are when born. I love platypus too but I think possums are perhaps my favourite. Definitely NOT the cane toad! Haha. You must come to Scotland and I’d love to show you around. Hugs back to you CG 💖🤗😘xx
Oh yeah of course! The Lockyer Valley! Maybe Gympie is safe?Here is a pic of my Mum and Dad at Lone Pine on their honeymoon. Lone Pine is very special in our family history
What a lovely photo. Can’t see all of your Dad’s face but your Mum was gorgeous. I think we’d have visited around the same time when I was very young 6 or 7. Thanks for sharing CG. Lovely memories. 🥰
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