I’ve been diagnosed with lupus end of Jan 2023. Since then I have been on prednisone for 8 months, high dose 25 mg to start with now reduced considerably to 5mg. I also take a range of other medications like Hydroxychloroquine, Myfenax, Lansoproazole and Losartan potassium.
I have been really struggling with anxiety, panic attacks and depression. I can’t think properly. This made it impossible for me to work. I couldn’t sleep much more than 2 hours for over 7 weeks.
Could this be because I’ve been on prednisone for so long? That it affect my cognitive functioning and the mood significantly? Have anyone experienced something like this? Are there any alternative steroids that can help lupus without these side effects? I know we are not doctors. My doctor said they don’t know the cause and that it could be. The anxiety and panic and not able to think is changing my life completely for the worse.
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TomatoEater
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It’s a well documented side effect of Pred - see this from a generic patient information leaflet [PIL]
‘Mental health problems while taking Prednisolone Tablets
Mental health problems can occur while taking this medicine (read section 4. Possible side effects for more information)
• these mental health problems can be serious
• these problems are usually experienced within a few days or weeks of starting the
medicine
• these problems are more likely to happen at high doses
• most of these problems go away if the dose is lowered or the medicine is stopped. However, if mental health problems do occur they might need treatment’.
.. and your doctors should be fully aware of this fact and should helping you - not saying they don’t know the cause.
Please dig out your PIL and take it to doctors and ask for help….
.. and sleep disturbance is another common side effect. ..unfortunately.
I have insomnia with steroids. I was on 20mg with my first major flare and was only managing about an hours sleep. I had no idea at the time that insomnia is a common side effect of steroids. It did improve with tapering doses but l struggle with anything over 5mg. Not sleeping will have a massive impact on your mood
As DorsetLady says - your doctors should be able to help. But all corticosteroids have similar effects, so another is unlikely to make much difference. By 5mg it is classed as a low dose, the effects should be lessening and time doesn't necessarily make it worse, most people get used to it. I've been on pred for 14+ years but have been lucky, no such problems.
However - the brain fog could well be the lupus, it is a common effect in autoimmune disease. or the mix of other medications. One on its own may not cause it, the more substances are involved, the greater the potential.
Hi so sorry to hear you are struggling. i remember my experience taking steroids..they certainly helped but then created other problems just as you have described..the symptoms much reduced as i reduced from 30mg to 5mg please seek help from your gp for further support..maybe a different gp if you can?..you don't need to be struggling on your own like this..the not sleeping in itself can cause so much distress.be direct when describing your symtoms and how they affect you. Psychological and emotional support is massively important. I feel it is not prioritised when we have a long term health condition..there is also VITA minds you can refer yourself or via your gp..it could be called something different in your area .good luck and don't suffer in silence.things will improve with the right support.take care 🌻🌻🦋
Very sorry to read your post and indeed we have all been there. You are on a high dosage and hopefully your doctor will help you decrease it ever so gradually. It will take you a long while to come down to safter (?) dosage. But it has to come down for your body sake. No good to sustain such high dosage in the long run. Insomnia is a massive issue. I managed to completely stop about six years ago and I am still struggling with sleep daily. Even a healthy person will suffer hugely with brain and body function without sleep. For me I had to get sleeping pills to take so that I could sleep if sleepless nights continue. I managed to cut the dosage (cut in half) and eventually quarter it. But that is much later on. For now, I think you have to first sleep and worry about not getting addicted to sleeping pill. You just have to use caution. I also take magnesium near the bed time and L-theanine for sleep. I did a lot of sleep hygiene therapies so I know all the tricks!
Are you also taking Hydroxychloroquine? If not, It takes a long time for it to take effect but ask your doctor. I think most Lupus patients are on it. Depending on your body weight, you can take one (200mg) or double (taken separately). Also if you get it prescribed, ask for Zentiva brand. Others may give you side effects. I suffered for several years and finally discovered it via this forum, not with the help of my doctor. Looking back, I am so shocked that my first Rheumy didn't advise me anything about steroids when first prescribing. He didn't even give me calcium. It was only later on when I learned by internet search. We have to help ourselves because very few doctors are able to help more than minimum. It is a case of luck. Very sad but true. Hope you get to sleep better and more importantly hope you can reduce.
Another thing you can do is ask for Cognitive Behaviour Therapy for Insomnia. This is often offered by the councils and you can even self refer. Depending on your location. But your GP should be able to help. A polite but insistent request will help if your GP doesn't come through. Good luck!
Prednisolone was awful for me too. I don't know what to tell you. I was on them for six years and they ruined my life. I refuse to have anything to do with them now unless I am dying and I certainly won't take them long term. But at the time I needed them, because the MTX didn't work for me. Hope you can manage to get off them - it takes a while to get normal again. All sympathy.
Thanks everyone. I don’t know what to do as I’ve been on a high dose for 6 months and didn’t know the alternative. I’m also on Hydroxychloroquine but obviously doctor didn’t give me the Zentiva brand. I would have to start asking my doctor about the drugs. I didn’t think too much as they were saving my life. I had no idea as doctors said prednisolone and the other drugs are completely safe to use.
I’m now struggling to think and do my job which is very scary as I wouldn’t be able to support myself. I can’t think like before and get panicked as soon as I’m stressed. I’m not sure how I can solve these. I’m trying to get some mental help but no clue whether I can survive this…
You will survive it, but you cannot do it on your own -so please seek help…
I’m not a Lupus patient so don’t know what help there is within that community-but I was on high dose (higher than 25mg) for another autoimmune disease so am aware of its side effects.
I was only on Pred for a few.weeks but the physical and emotional effects were beyond dreadful. The consultant described steroids as highly effective but that they were like sledgehammer. I will never take them again unless I am in real extremis. I hope things improve for you.
It certainly did me & it seems to last long after my dose tapered (which took over a year) & I eventually stopped taking it. It's now in all my notes that I feel it should be the last resort.
Oh yes they are horrible I only take high dose when I get a flare up and I am on 2mg many years that's fine hopefully you will not need high dose for long thinking of you. ❤️
Hi! I am very sorry to read that your are struggling. I fully relate to your description, as it is exactly what I am going through at the minute. A month ago my pred was increased from 3,75mg/day to 10mg. The first days were massively depressing, I have been extremely emotional, and of course back to 3-4hour sleep. I am hoping that the rheumi supports decreasing to at least 7.50, now that I did a full 4-week course.
Precisely a year ago I was in hospital on 60mg, my mood swings were allover the place, from crying my eyes out to being super focus - obsessed even with an idea or task- , to irritated, to laughing all from one minute to the other, and consistent anxiety and a sub-humane physical energy that had to be released some how… As the dose started to decrease gradually, the mood swings started to improve, yet by January, when I was on about 20 mg brain fog and other cognitive impairments kicked in. I was told that the effect on my cognitive function was given to prolonged sleep deprivation (3-hours/day for 3 months) likely thanks to the Pred. I was prescribed sleeping pills which I never bought. I took the decision - not recommending that anyone does it though! it was just what felt right for me - to wait and see how the tapering course I was on would play out, before entering what felt to me as another rabbit hole. By the time the dose dropped to 5-3.75mg/day all visible side effects disappeared; I stoped having the extra energy to workout, but to me it is way more important to get my cognitive functions back, would not swap them for anything.
I have been to two rheumatologists who turn out have opposite stances when it comes to Pred; one believes that it does not make sense to taken them off at all, the other wants to remove it super quick without regular checks.
My point is, Pred does wonders, it saved my life a year ago. But is not for everybody, at all time (depending on the medical condition at the given moment, complementary medication combination) or the same dose. I suggest you have a frank discussion with your specialist to discuss options and balance out risks and quality of life. I am planning to do so as soon as my blood works are ready.
Thanks a lot for the reply. I was having 3 hours sleep for about 4,5 months this year. More recently when I started going back to work I felt I couldn’t do the analysis anymore and have a lot of anxiety and that caused me to have insomnia again for over 2 months. I don’t know how you manage to get the sleep back. How long did it take for you to get the cognitive function back? I’m feeling hopeless that I would be able to do any kind of analytical job.
In my case I cannot pinpoint at one element alone, as I took a number of actions in parallel. It was a mix of:
- definitely tapering Pred very gradually,
- a very strict diet in order to avoid inflammation of any kind,
- supplements specific for the brain and others to combat other deficiencies; for example, my blood works at the time revealed that I was totally depleted of vitamine B6, which also contributes to anxiety and depression.
- My doctor advised me to drink camomile and salvia tea in the evening and avoid sugar, coffee and caffeinated tea.
- As per my dr advice I tried to follow some mindfulness, give time for me to process what had happened to me, my new condition, and try to be kind to myself ( normally I am my own worse enemy).
- And finally, I was lucky with the support and patience I got from my employer and colleagues who allowed me to take my time, and of course from my family.
I had the feeling that all these fronts tackled together did the trick.
It´s important to tell you that I am followed by a certified naturopath who guides me with the supplements based on my blood works and lupus medication, and then I double-check it with my doctor what he had advised me to take. So far they have been in total agreement even if they never met. My main doctor (internist) also lives with an autoimmune condition and has taken this wholistic approach for managing it. Neither of them meddle with the prescription by the rheumi, their advice tries to complement it with the view to build resilience, so that it mitigates the negative effects of that medication and may eventually allow the rheumi to lower the Pred and immunosuppressants.
Last January I hit rock-bottom with my cognitive function. I used to have an eagle eye for detail, good analytical thinking, and had very good memory. All that lost with the added factor that time moved slower for me, probably because I was processing information very slowly. All self confidence was gone, I feared I would no longer be able to do the job I love. I suspect you may feel similar?
I got my brain and who I was back by May. It felt an eternity, and I think it takes time. I had support at work, I was kept on medical part-time until April and had time flexibility for my breaks. If that is not the case with you, I would consider asking the gp for a referral for professional cognitive behaviour support. It is very hard to do it alone, now that I went a step back in my recovery I am considering doing it myself.
If there is anything comfort I can give, I am here. Your post really resonated with me, somehow there’s another person struggling with a similar situation, agonising over keeping Pred on to control inflammation or being able to sleep and think clearly. Big hug
Thank you so much for the long and detailed reply.
I currently don’t have a flare up other than rashes, so not sure if I can contribute my lack of cognition to that. But I don’t know anything else that would affect me this way.
I fear I won’t be able to work and not able to tell them about this as I just started to realise the issue. I’m not sure I can get the same support.
For the diet, are you on AIP? It seems quite hard to follow, what’s your suggestion for that? Even when there’s no flare up, is it still the best to avoid all the bad food? I dont know how to manage without eggs or rice.
My reheum doctor never advised me on any supplements and they don’t seem to provide me with more info on that.
Would you also be kind to recommend a naturopath? I’ve not heard of them and I do hope they would be able to help.
All of these would seemingly make it hard to do work at the same time. I’m glad you managed but for me it seems very unlikely to see that end.
Thanks again for being so nice and taking the time.
My reheum also dismissed the dietary change even when my bowel was constantly massively inflamed, I looked like pregnant (I am slim but had a bump sticking out always in pain). My internist was the one insisting on the diet; I had also been hearing on the BBC radio 4 that more and more researchers are convinced that autoimmune problems are linked to gut health.
Indeed I am on AIP diet. My Internist advised me that gluten is by far the most important to cut fully and forever, as well as processed food; she also advised me to cut all cereals, legumes and nuts at least until I feel better. Like you, emotionally I could not fully embrace the AIP diet immediately. I started gradually removing food that I felt immediately to cause me inflammation. Then I went on a farewell journey of my gluten rich comfort foods like my last chocolate biscuit one day, my last slice of favourite cake the other. Eventually that farewell journey was shorten to one single bite of something I really like; when I have cravings I buy to give as a treat to family and friends who enjoy it. I started by swapping regular bread with the occasional gluten free bread until eventually I also cut that. I started this journey in November, by mid-January I was able to cut completely gluten and added sugar. In April, I took the plunge and cut all gluten, cereals, added sugars, dairy, soya, legumes, nuts, night shade vegetables, eggs, all fat but olive oil and coconut oil, coffee and caffeinated tea, and a number of vegetables and fruits that tend to cause bowel inflammation.
Also, I always eat salad or green leafs like bok choi before any meal I often carry a bag of read to eat salad on my me just in case - the theory goes that it helps minimise glucose spikes (my dr advised me to read this book, she agrees with and encouraged me to follow the green thing but not the vinagre as replacement - The Glucose Revolution amazon.co.uk/s?k=the+glucos.... I never removed potatoes from my diet, my Dr’s husband is gastroenterologist, a study he was carrying out seem to suggest that if you boil potatoes and leave them to cool down for 2 hours before you eat them, they go through a fermentation process that is good for gut health; after the potatoes cool down I either eat them cold in salads, re-heat them or cooked them further as I feel (fry, mash, roast etc).
I don’t snack limiting my food intake to 3 full meals a day, if you eat enough and properly you avoid cravings in between meals. I try to eat regularly bone broths, apparently are very good for autoimmune conditions. For over a month I did it very strictly; the first week was hard to find my way around. Eventually, with the help of my husband who is a chef, I started to learn about alternative products, and I am able to eat fulfilling and tasty meals. My breakfast for example tends to be left overs from lunch or dinner the day before, every two weeks or so we bake a banana bread made without gluten, cereals, eggs or sugar, which is surprisingly ok (the first attempts were a bit of a flop ). 3 weeks later, bowel inflammation was gone, my hair got thicker and shinier, my skin as well, my energy levels were very good and my cognitive function was like before my ordeal. In June I started to test the gradual re-introduction of some food like tomato, eggs and the occasional goat and sheep dairy (Aubergine seem not to have passed the test). I used the reintroduction method suggested in this book amazon.co.uk/Autoimmune-Sol... which has good recipes for inspiration. According to the Dr who wrote that book, supplements are also vital for our recovery, the list she suggests is quite similar to that advised both by my internist and naturopath. Unfortunately the only naturopath I could recommend is abroad, but I am sure there must be good ones in the UK.
So far all this was working very well for me, my reheum was really impressed with the speed and quality of my recovery. My recent set back was caused by an accident. As I am learning with us, we stand on a very fine balance and something seemingly simple can make a splash in our system.
Thank you so much for your detailed reply again. I’m out of the UK for a bit so just want to say thank you when I can. I really appreciate your help. I am unsure I can get to recovery. Have very little hope. I would try to see how far I can get with the diet. But I can’t sleep due to anxiety for another two months now. I’m unsure the insomnia can be fixed and that’s definitely not going to help my brain. As I also have panic attacks when I’m very anxious. The combination of them seem very complicated. Also the antidepressants etc.
I really hope you get through your recent accident episode soon.
Have you spoken to your doctor or pharmacist about the sleep - maybe get a short course of sleeping tablets to try and "break the cycle". I was on much higher doses than you for about 6 months for GCA [Giant Cell Arteritis} and my GP suggested I try an OTC remedy - not every night but on odd timesjust to give me a couple of good night's sleep. It did help but will say I wasn't working. I used one of the Nytol variants...
Yes. I’m trying stronger sleeping pills than my til but that one is not working for me either.. also unsure about the antidepressants and whether that’s going to help my anxiety and panic attacks.
The problem is with many drugs, they have their own set of side effects - so you cannot always be sure if they are making you better r worse. It can be a minefield... 🌸
I’m not qualified to give medical advice but having experienced panic attacks and depression in the past I would not personally think prednisone is causing it.
As it is less than a year since you were diagnosed and started all these medications, I would imagine you are emotionally and psychologically stressed by the new world you find yourself in physically. It takes time to accept that you have a chronic condition. There are mixed emotions and anxieties swirling around in your head. I’d advise you to be gentle on yourself and be assured that you will soon get used to living with Lupus. As you are gradually being weaned off prednisone you may begin to feel better soon. You will have ups and downs physically as well as in every other way. But I pray that you will feel better soon x
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). 3 weeks later, bowel inflammation was gone, my hair got thicker and shinier, my skin as well, my energy levels were very good and my cognitive function was like before my ordeal. In June I started to test the gradual re-introduction of some food like tomato, eggs and the occasional goat and sheep dairy (Aubergine seem not to have passed the test). I used the reintroduction method suggested in this book 
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To PANIC or not to PANIC that is the question
