Hi I’m new here, I was diagnosed with lupus in January. I’m on prednisolene & hydroxychloroquine. My steroids have been tapered from 7.5mg down to 5mg and now I’m missing a day in between. I responded well to the higher dose & my symptoms vanished ( well not 100% ) since I have been on lesser dose my symptoms are returning in a milder form. Is this normal for this to happen ? I thought the medication stays in the system for some time ? I guess I’m just scared that when I come off steroids completely my symptoms will return with a vengeance ☹️
Tapering steroids : Hi I’m new here, I was... - LUPUS UK
Tapering steroids
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Soul_girl
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Hi and welcome.steroid tapering is my nemesis.ive been on prednisone for 6 years everytime I get my meds down below 10mgs my lungs flare ( lupus had affected my lungs) im on hydroxchloroquine and mycophenolate also.the hope was the mycophenolate would help me reduce the steroids...not yet anyway.im now on 8 mgs and so far no sign of a flare.for me it's a case of smaller increases until things settle and longer drops....1 mg a month max .it is a very slow process of 2 steps forward 1 step back but you will get there.i self medicate mine realising it was no good doing bigger drops and having a larger flare to calm so when I feel things starting to flare ì raise them slightly then drop again over a longer period of time.i find it takes about 5 days for me to feel the drop and I usually have 2 bad days when I sleep.its a case of getting your adrenal gland to wake up again after it's been to bed for however long you've been on the steroids.i wish you luck be patient xx
Thank you so much that has helped me, consultant has mentioned when I have come off prednisolone & if my symptoms return they would look at putting me on methotrexate. My lupus attacks my joints predominantly, plus the exhaustion is really hard for me to get to grips with x
My lupus does affect my joints too but it has mainly affected my lungs,kidneys and heart. We all suffer chronic fatigue.my advice to you is go with the flow and dont fight it.planning a daytime nap will give you a boost for the rest of the day.dont feel guilty...I'd say most of us have learnt it just something we ve got to do with lupus.with regards to steroid drops I listen to my body and dont drop my steroids again until my body has adjusted to the previous drop.you can go into adrenal shock if steroids are dropped to quickly.i have 5mg,2.5mg and 1 mg tablets so I can reduce in small amounts so if i was on 7.5 I'd be going down to 7 then 6 etc.i have no experience of methotrexate but others on here have and I'm sure will share their advice should it be needed.xx
I was prescribed pregabalin for the pains in my hands and feet x
Thank you 😊 I know I need to be kind to myself and rest. Will most certainly plan rests as you say. One of my biggest downside was trying to explain how tired I am to my partner and feeling that he thinks I am putting it on , that really annoys me that I feel I have to justify when I am resting & I end up resenting him ! Oh the joys of lupus hey ! X
Google the spoon theory and let him read it...its a brilliant analogy of chronic illness.i hope he doesnt stress you out as it will fuel your illness.i can get up need a nap at dinnertime one at teatime and still go to bed ...other days I can make through the day without 🤷♀️.I agree with PMR about starting methotrexate.I was started on mmf before starting another steroid drop xx
Thank you I will look it up x I m the same, dreading going back to work as been working from home & able to nap during lunch break ! Thanks so much really appreciate the help & advice x hope you’re having a “good” day x
I cant work now.i have to be very careful as I have next to no immune system due to the mmf and worked in a high infection environment.both mmf and methotrexate are chemotherapy drugs.i think you may have to consider talking to your employer .
Not a bad day...got wet in the rain this morning 🙄 then chimney sweep came so we are good to go now for winter then had a jolly on the beach.tired now so tea and pjs. Wishing you a restful evening ( reading the spoon theory ) 😘 x
Same to you lovely & thank you 😘
They ARE chemotherapy drugs - but the devil is in the dose. The doses used in rheumatology are far lower and less risky.
Yes thanks I know that ....... I've taken the damn stuff for long enough
You know - others looking in mightn't ...
Yes. 👍 Apologies for the sharp reply x
It’s hard for a partner to understand an illness that affects them as much as you but without symptoms. They have to learn about the illness and find ways to understand. My partner was just like that at first, with a lot of but why can’t you do that. Over time he watched the ebb and flows of energy and joints hurting. He is now better about managing me than me. He tells me about over doing it and what will happen. It is a learning curve for both of you. Spoon theory helped a lot and I have told colleagues and friends to watch it too. It does give a language. Partners suffer Lupus but without the symptoms, it’s hard for them and we need to patient. Good Luck with it all.
Sorry to be brief but I am in a horrendous flare and have terrible wrists.
To me your Drs plan makes no sense. If he were to start you on methotrexate now that could help you come off the steroids. And I fear it will take you a long time. It's taken me 5 years to get from 20mg to 9mg. Once you get below 7.5mg you must go very slowly otherwise you may suffer. But if the MTX works for you it could help you ditch the pred. Perhaps you could ask your Dr?? Just a thought.
Thank you I’m certainly going to mention this to hem x I hope you are feeling a bit better x
sorry ht, your still suffering so much. Why don't you contact your Rheumy team. Xx
I have tried and tried and tried.
What is the matter with them ht?. They should be willing to help you. Lovely seeing you back on here too. TAKE CARE and I hope you feel better soon. Xx
I've got a few problems at the moment.
I've developed another kidney infection, hence no increase in pred or DMARDS. My infusion has had to be postponed until the infection is clear. It was all a result of the heatwave. I developed hyperthermia!! Not hypothermia, hyperthermia! My ANS is so screwed I just couldn't cool down. I needed to go to A&E but my mum didn't call an ambulance. I should have had IV fluids.
So I've just narrowly avoided sepsis again and am on 2 antibiotics for 3 weeks and am in a horrendous flare and living on my own. I'm sleeping for about 18 hrs a day which is terrible because I can't get enough fluids in. I wish I could have an IVI at home. It would make life alot easier.
Any news on your op??x
Just slipping in to say sorry that you’re still struggling happytulip. Infection, flare and hyperthermia - oh not good...I'm so sorry for that.
I had the ANS hyperthermia thing in the hot weather too, slips nicely into hypothermia in the colder weather. Truly and horribly debilitating, isn't it. I wish it was something that was visible so that it would be taken seriously rather than being greeted with a shrug. Seems we are both ANS broken and deranged!
Some do manage to have home IV's - worth asking to see if that's available in your area (but ha, I bet you'd probably know if it was 😉)?
Shocking that you’re having such trouble accessing appropriate medical care and help. Really hope that things improve very soon.
Hugs xx
Thank you. I have looked into IVs at home but it's not possible.
I did manage to get a home visit from a GP which was an achievement because they only do that at my practice to certify death. And that's how I am feeling right now.
I have a lidocaine infusion booked for September but I have to kick the kidney infection first and get on top of my pericarditis.
The last time I felt this shi*e was just before I got diagnosed, but I was stronger then and in less pain.
My Rheumatologist wonts start me on DMARDs again or increase pred because of infection.
I'm in so much pain and so alone and I don't want carers in because of the Covid risk.
It's the first time I've had skin involvement. I have bad Erythromyalgia but this time it's like I have been skinned with a potato peeler from head to toe. A very painful feeling but it's the only way to describe it ..
Sorry for the moan and groan. I'm on a lot of heavy meds xx
Oh happytulip...you’re perfectly entitled to moan...who wouldn’t given what you’re going through.
Perfectly understand about the potato peeler... I get sheets of burning flesh from SFN (neuro says it’s a sign of the nerves dying - lovely)!
It makes me feel so sad that you’re so alone in all this.
Been thinking of you...just know that you’re not alone in this virtual world. But oh how happy making if we could be less virtual and more present for each other in the ‘real’ world 🤷♀️.
Must try to rest and sleep now (you and me both)...I owe you a PM...incoming pending...
More hugs xx
So sorry ht your going thru such a horrendous time!. Can't we get caught out health wise by the simplest of things and PAY for it BIG time. The anti- inflammatory effect of the antibiotics should help with the flare and you've done well to avoid sepsis this time!. Do hope you'll be better for your lidocaine infusion in sept. Tightly crossed fingers for you.
I can't get any of the things I'm waiting for at my local hospital thanks for asking. I'd love to have a date even as it's something to hang onto. I'm on three waiting lists , op, colonoscopy and my leg injections!. It's so frustrating as we've been so covid free down here but have had to follow national guidelines and everything is much slower because of the covid restrictions!.
Do hope you turn the corner soon. I'm with you in spirit as my joints are flaring too, lots of pain!. What a PAIN!. Big hugXx
No, the antiiflammatory effect of pred only lasts from 12 to 36 hours depending on the person. Once it wears off the symptoms will emerge if the dose is now too low.
Even though you have only been on pred for 7 months I think your doctor is being a bit enthusiastic with the reduction and what you describe is likely to be hard going. Top experts recommend not dropping more than 10% of the current pred dose at a time - yours was 33%! And while alternate day dosing is a recognised approach it can be very hard work adjusting to the big change in dose from day to day.
Thank you I never knew any of this . No wonder I’m struggling with it . As I mentioned in previous post consultant said once I am off prednisolone and if my symptoms return they would look at methotrexate next ! Seeing consultant again in September so will talk about the drastic tapering, thanks so much x
It hasn't occured to them to start methotrexate now to assist in reducing the pred dose? It is used as what is called a steroid-sparer in various situations so there is no need for you to get off the pred first and you would be able to balance the two until the methotrexate started to work - which can take months.
It is being one of those days - someone on my other forum saw a so-called expert musculoskeletal specialist who told her because her markers aren't raised and she is in "too much pain" it can't be PMR!! One in 5 patients don't have raised markers. And he happily sent her away in "too much pain for PMR" rather than offer her a trial of moderate dose pred! Mind-boggling ,,,
That is absolutely shocking...poor soul x
Apparently she has a gene that can be associated with something else and he has sent her for an MRI - no explanation to her though. And a week or two of pred wouldn't have altered the result ...
Awful for the poor lady, doesn’t seem right just sending her away with nothing for her pain even !
"BANG HEAD HERE" moment by the sounds of it.
You're the ultimate expert on pred reduction Pro. X
Sounds as if you've been banging the wrists!! 
xxxx
Wrists, head, shoulders, knees and toes....you know how it goes!
Had a friend help me change my bed sheets yesterday. What was the point? Having the most awful night sweats.
I detest AI disease and my treatment has been thrown out of the window since covid....sorry to rant but I just feel so vile at the moment x
Probably applies to a lot of us ...
Hi Soul Girl! Sounds like they tried to bridge you. Hydroxychloroquine takes about 6 mos to gain full effect so while that is ramping up, they put you on steroids which reduces inflammation immediately. Then they taper you over the same time the steroids sparing drug (DMARD) is ramping up (HCQ in this case). If HCQ does what it’s suppose to then as you come down off prednisone, your symptoms should be milder than when you started.
You’re in the same boat I was in but once I got below 20 mg, my body went crazy. Anything below 7.5 mg is below natural physiologic levels so from 7.5 down, you must taper very very slowly. Like by 1 mg every week to every 2 weeks or you run the risk of adrenal insufficiency.
Some people can never get below 5 mg and I know many RA and lupus patients who stay on 5 mg of prednisone for a long time. They also usually have bad arthritis. Moreover, MTX can take up to 12 weeks to work. I don’t know if it’d be worth going back up on steroids and coming back down after starting MTX... like re-bridging. It’s something you’d have to discuss with your doctors and yourself. Could you tolerate your symptoms at 10 mg of prednisone while waiting for MTX to ramp up? I hate steroids enough that once I got off of them, I’d suffer a lot before going back on them. They do horrible things to my body, weight and mood. Personally, I’d opt to wait out effects of MTX before going back up.
Does anything I said make sense at all? I’ve been in your shoes and I’m so sorry for what you’re going through. You feel so good only to be let so hard when almost get to 0. Sending hugs your way. Hope you find relief soon! ❤️
Hi just typed a whole message back to you & then lost it ! Anyway thank you for your advice, it’s good to know that others have been through it, well I don’t mean happy you are poorly but hope you know what I mean ? I am the same with weight gain, moody etc, it sucks & I hate it x will definitely be speaking to my consultant when I next see him x big hugs 🤗 back x
"from 7.5 down, you must taper very very slowly. Like by 1 mg every week to every 2 weeks or you run the risk of adrenal insufficiency."
It depends on how long you have been on pred but from 7mg 1mg per week is too fast for anyone once they have been on pred for more than 6 months. More like 1mg per month is recommended by top experts in the field.
No offense PMR but you’re not a physician nor a top expert. Everyone has different experiences. This was mine and how I was tapered when being bridged to Plaquenil over 6 months. You are not the one and only patient on prednisone.
I’m just being open and honest with my feelings but when you troll and comment on others advice, it gets old. Appreciate your input but thinking you’re always right and correcting people all the time is annoying and condescending... and that’s coming from a real physician with a MD in internal medicine and a PhD. Interactions with you are always tenuous.
I don’t plan on responding to the thread anymore but if you wouldn’t mind, stop talking like you know everything about steroids.
🙌
I have to step in here and say that PMRpro has really helped and supported me in ways that my medical team haven't. I see Pro as a supportive member of the forum, not a "troll." Horrible word.
In my opinion the support that I have had has been from someone who is trying to educate and inform from their own experience which helps me to make the correct informed decision for me in conjunction with my own medical training and medical team.
I've never seen or experienced any animosity on this forum but your response is a bit harsh and uncalled for, in my opinion.
Can we a just think before we post? Some posts might be helpful to people even if they are not useful to you.
I wasnt a big fan of Caroline Flack, in fact I didn't know much about her. But her last words were very powerful.
"If you can be anything in life, be kind."
We're all different. I'm stuck on 9mg. I've been tapering for 5years from 20mg. If I reduce it has to be by 0.5mg every 2 months. That's just me.
I usually am very kind happytulip but it seems every single time I post, PMR has to correct me every single time and even when I’ve tried to discuss with him/her before, they weren’t very nice. Actually they were quite condescending. So I use troll because they always seem to want to correct just me from what I’ve seen and experienced.
I said I appreciated his/her input but there’s a way to do it. I’m not even saying PMR experience isn’t valuable. All of our experiences are valuable and that’s what I’m saying. Just because someone does something one way and another a different way, doesn’t make one person wrong. I don’t think there’s a place for right or wrong on here... only sharing and accepting.
I don’t get the accepting feeling from PMR. I feel like they are talking at me and not to or with me. By correcting my experience and how I tapered, minimizes my experience. That’s all I’m saying. Online leaves a lot to be desired in regards to tone. I’m not being mean. I’m being honest because this isn’t the first time. Setting boundaries is a healthy thing. As a physician, I would never talk to my patients the way PMR writes sometimes. Personal preference.
Thanks for your feedback. ❤️
😘
Thank you for your feedback too. Perhaps it is something that you can both address off the open forum or just let it lie?
I worked in Emergency Medicine for 15 years and I use this forum alot. But I know that when I come on here I come on as a forum member not as a medic. Sometimes that is hard because I want to be that decisive person with a clear medical plan but that is not what the forum is about.
It is about support and sharing ideas and experiences. Giving out medical advice is also against guidelines, it's a fine balance and a tricky one.
Also, sometimes I feel so terrible, such as now, that I drag myself onto here for support and am in no state to be the old "medic me" because I'm flaring to much and just want a rant or moan.
Recently I had a really awful experience on another forum on HU that almost made me never post on here again, even though LUK had nothing to do with it. It massively knocked my confidence and am still only replying and not posting.
Lots of people have been very supportive via private messages, (you know who you are- thank you)!
I just like to see people being harmonious and getting on on the forum. I fully appreciate and respect what you are saying.
I think there are so many valid contributions to this thread. It would just be a shame for any upset to be caused.
Take care.
I agree HT. I just popped off today because it happens more than I’d like. I could’ve private messaged. You are right.
I do not act as a physician on here at all. I act as a fellow loopie and if I have more detailed knowledge about something, I share. You will not find me correcting anyone because it’s not my place and inappropriate.
The people on here have taught me more than any book or rheumatologist. I value the forum very much.
Btw how do you tag people in posts like you did PMR? I’ve tried @name but it doesn’t work for me.
If I were to tag you I would put a @ then write Jmiller623 with no space in-between the @. Sometimes you have to scroll down on your device to find it depending on what device you are on. Mine can be a bit temperamental sometimes.
Take care and good luck!
Hi,
My wife has been on steroids from 30mg to 0 for over 3 years now. We have settled that between 7.5mg and 10mg keeps the worst at bay.
Its a careful balance in my wife's case they work incredibly well but with a price. She now has catarachs and osteoprosis.
Her experience is to come down very very slowly 0.5-1mg month otherwise she crashes.
If you need steroids to a high degree perhaps talk to your specialist about steroid sparing drugs.
Good luck
I am on Methotrexate and Tofacitinib. I have been on prednisolone for 13 years. Was on 7mg four years ago and now on 0.5mg daily. It does take a long long time to taper pred. You have to listen to your body and take it at a pace that suits you. None of these doctors has suffered the symptoms which you are experiencing. Once I got to 1.5mg daily, I had to reduce by 0.25mg at a time. If you overdo it and have a flare,
then you’re back to a higher dose of pred and working your way back down again.
I agree with a lot of other comments, why don’t they start you on methotrexate then reduce your pred once it has kicked in.
I would just add, do your research, trust your body and your instincts. Each time I have a checkup, a different registrar gives me different advice. In the end you have to go with what suits your body. Every case is different. Good luck to you. It’s a long road but it can be managed.
Thank you it’s a minefield to me at the mo being new to all of this , I started keeping a lupus diary which I have abandoned so going to take it up again . I think I also put a lot of things down to menopause over the last few years so brushed certain symptoms off as that . I’m really grateful for your advice, you are all a breath of fresh air to me sharing your experiences x
All the best. It’s not easy, lupus is an ever evolving disease.
I am on steroids for the last 20 years.
8 mg medrol is my comfort level
Medrol is less harmful as per my Dr.
But we should monitor the PC ratio, to safeguard kidney.
Take lots of water also to reduce risk.
Wish you all the best
you should work with your doctor to determine the dosage of steroids that will be the best for you. everyone is different. 7.5 is still a very low dosage so you shouldn't worry too much if you need to stay on it for some time. For example, i was on maintenance of 15 mg per day for long time and slowly over couple of years i reduced to 1 mg per day. again everyone is different and you have to experiment with your doctor what's best for you to keep your symptoms away and use as little meds as possible to achieve this. Your doctor might advise you to try some immunosuppressants too if they think it's less risky than steroids. although if you react to 7.5mg maybe it doesn't make sense for additional meds.
Thank you x
Bottom line is that tapering steroids is a tough battle and a very individual thing so it is vital that you listen to your body. In my experience it better to go very slowly and achieve a steady reduction instead of going to fast and having to "bounce back up." Because that is soul destroying.
You'll get alot of support on here so do keep posting. DMARDS such as methotrexate will bring there own challenges too and I had plenty of questions about that before I started it and found alot of solutions on here.
Keep posting and asking questions. There is so much experience on this forum and it really helps to not feel so alone.
Good luck and take care. You have done amazingly well to get as low as you have in such a short time.
Thank you 😊 I’m sorry the thread seemed to go a bit astray earlier on . I am so grateful for everyone who has commented on their own experiences, as I mentioned it’s like a breath of fresh air to me, being new to this . Xx hope you’re ok x
Hi, I’ve been taking steroids since 2011. I’ve managed to get down to 5mg now but any lower and, like you, I get joint pains. I take mycophenolate, hydroxychloriquine and methotrexate. My steroids are raised if I have a flare but then reduced back down to 5mg.
Like others have said, it’s a horrible process and takes time. Good luck 😉 x
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