I'm 18, I've been on prednisolone at varying strengths, going up and down between 60mg-10mg over the last three years. For the last year I've been on a maintenance dosage of 10mg since being referred to a respiratory specialist, whilst occasionally being upped to 40mg to handle a chest infection. I'd been pretty lucky up until about 7 months ago though, and for no apparent reason all of the prednisolone effects started hitting me at once. Suddenly no clothing fit me, my face was getting rounder by the day, my mood swings were worse, I had back pains and couldn't move and considering I'm an ex gymnast I was worried by that, my doctor ran a test for bone density and found I had a mild case of osteoporosis and so far we haven't been able to improve it and it's only getting worse.
Fortunately, my family, friends and boyfriend are all stupidly supportive. They all tell me they don't care about the amount of weight I've gained or about my face. However I'm still a student, and a student who used to have an eating disorder, and I'm scared to go into classes because of the comments I get about how round my face is (I genuinely get people laughing at me), something I cannot help at all, I'm scared to wear anything that isn't an oversized XXL t-shirt and jeans. I don't remember the last time I looked in the mirror and felt like myself and whilst I know I have to take prednisolone as the only way of managing my asthma whilst I get other treatment. I don't know how much longer I can stomach the completely demoralising attitude people have towards me and I have towards myself. It's draining. Nearly every week me and my mum have the same argument, I beg her to let me throw the steroids out, she cries and begs me not to, I cry and ask her to just feel normal again.
How do you do it? How do you handle changing from one person that you felt comfortable as to someone that you barely even recognise? I'm covered head to toe in stretch marks that hurt, I weigh myself and it says I'm severely obese, and yet I'm stuck in limbo waiting indefinitely for my steroids to come down to the point where I'll loose some of the side effects.
If anyone has any advise for how they deal with the side effects of prednisolone, please PLEASE can you share them because I'm having the hardest time mentally with the way they're causing me to look and feel.
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ameliaflowers
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I’m sorry to hear what you’re going through, and can understand the frustration with the pred. I’m lucky in that I have so far avoided moon face as an issue, and my GP started me on bone protecting meds once he realised I was on pred more than I was off of it (hoping hats protected me from osteoporosis/osteopenia)
I’m gald you’ve got a good support base behind you, but I do know how much the comments can hurt (also Ex gymnast, now coach at the weekend).
The little devil pills make us feel like hell, but try reminding yourself how much worse you’ll feel without them. They suck and you can shout that to the heavens. We all understand. But Rn they are helping you to keep going. Hopefully your local con is trying to speed up the spec hosp appt (you can ask to go on the cancellation list), and hopefully you’ll be eligible for a MAB so you can come off the pred. Gonna assume you’ve been put on alendronic acid (or similar) +/- adcal etc, but are you on a theo/amino tablet? It’s worth asking about if not... I know for me it got me stable enough to keep to the lower end of pred more...
Be kind to yourself, your bodies doing the best it can, and hopefully this is just a small blip whilst things get sorted (and horrible nasty blip maybe. But hopefully short).
And I’m sorry you’re going through this whilst at school/uni... mine all flared during my final year(S)... best advice is talk to con and to your HoY, ask about support etc as I suspect you’re currently eligible for support if you’re not getting it (if you feel like you need it)... nothing worse than struggling/scraping through or failing due to no support. (Been there, done that)
The best non medical thing I did to help the mood swings... invested in a jellycat, amusable, watermelon keyring (I named him Mel(vin))... you cannot look at him without smiling (have tested on various docs and nurses and patients not just me 😉)... natural antidepressant and comforter.
I just broke out into tears in bed at this, because it's the first time in years that I've genuinely felt like someone understands remotely what I'm going through. I've never met anyone who has dealt with asthma in the way I have, I've never even spoken to anyone who's going through something similar. And this whole message was a genuine breath of life (accidental asthma joke there) for me, I cannot thank you enough.
I'm already on Benralizumab, I have my fourth injection on Tuesday, but they keep on delaying my reduction of prednisolone and it's exhausting. I know it's nobody's fault, but it's difficult being so angry and upset and having nobody to actually blame. It's a weird feeling.
Thanks for the advice on the theo/amino tablets because I'm not on anything like that
And for the jellycat watermelon keyring tip, I'm making it my mission for tomorrow to find one because it brought the first smile to my face of tonight through a lot of tears and if that can already make me smile, it's bound to be worth it haha.
I really seriously cannot thank you enough for your words though, I don't even know how to explain how genuinely understood you've made me feel and that's priceless, so really thank you. I've cried a lot of happy tears over this and they're the first happy tears of the day.
Ha. No worries... hopefully it’s good tears... I remember the relief of finding this site and finding people who understand/have been in similar situations to me! It’s very isolating cause no matter how much support people offer there’s still that barrier where people just don’t understand (they can try but you know they don’t really).
I’m on benra too (had xolair and Mepo prior). For me it’s really helped so hopefully you’ll see an improvement too (and if not talk to them, maybe a different one will work better for you). I’ve just had my own ‘blip’... lasted 6 months without an a&e trip (issues dealt with at home, with steroids and a couple of nebs), but cold lead to admission lead to being put back up to 40pred the week I was meant to drop to 7.5 (my maintenance was 10 and had been there for almost a month)... local con thinks my body ‘wants’ 20 pred but I’m trying to persuade her (and my body 😉) otherwise 😅. Now got a long wean down again.
Talk to your con, ask them about wean and why they’re delaying. Be blunt about how it’s making you feel. Make them understand and get it off your chest. Even if it doesn’t change their minds it should help you feel better. And a warning that the last 10mg is going to be a really slow wean as the check for AI etc.
Let the emotions out. Bottling it up does jack but make you feel worse.
This is Mel ( jellycat.com/amuseables-wat... ) but they do a whole selection (I may or may not have collected a ‘team’ to cheer me up so Mel gets some downtime 😉😂)
You’re welcome. I know what it is to be in your situation. And sometimes all you need to hear is ‘you’re not alone’. (Ps I use that mantra with another friend of mine... she’s also 18, (ex)gymnast (due to asthma), severe, high dose steroids and in/out icu atm (very amuses by your similarities tho she’s yet to get onto MABs and only just had first spec hosp appt) ... it’s now logged in her brain as well as my own... hopefully it works for you just as well... she made a poster out of it to remind herself)
It's rubbish and I'm sorry you're having to go through it.
I yoyo-ed 15-40mg pred for a few years, ending up with immune issues and the effects you describe and so many admissions due to immune issues. It was decided not to increase my pred on admission if possible and to slowly wean off it. Took 2 years to get 15mg to 8mg. 10 to 8 was really hard so we stopped there. Had 2 years of it not being increased and then this summer they did (IV hydro then on to pred). Resp nurses were a great support but weaning it back down was awful. So we're not doing that again.
Obviously that's not helpful necessarily because everyone is different, but you're not alone x
Hi, I’m really sorry you’re having such a hard time. It must have been a real shock for your body to go through such a big change, no wonder you’re finding it difficult.
It’s great that you’ve got the courage to reach out to the people around you and on this forum about how you’re feeling. I’d encourage you to keep doing that, even if it sometimes feels hard. My asthma’s become severe over the last couple of years, it’s been life changing and I was in quite a bad place for a while. I’m starting to feel a lot less depressed now, and I think it’s because I’ve managed to be open about my issues and discovered that people are generally understanding and caring - so I’m finally feeling less isolated. Just my experience of course, but I wanted to share it in case you find it helpful.
I hope the benra kicks in or you find another treatment that works. Wishing you all the best.
I can only give you my personal experience with prednisolone . For myself pred. causes terrible insomnia to the extent I can not manage my every day life . What I found is that I am sensitive to its affect both good and bad . What I did was reduce the dose to a third of what had been prescribed . I found a dose as low as 2.5 mg was sufficient to control my asthma . I then weaned myself off them completely .
Obviously everyone is different , but you could reduce the dose and see how you go . You can always take more if you find your symptoms are not being controlled . Hope this helps .
I would advise against this without your team being involved. Weaning without support (esp if you dont know what youre doing) can be really dangerous, cause it may a) spiral off a major asthma attack or b)lead to major issues if you have undiagnosed AI cause youve gone solo and havent been checked.
Griffon I’m glad you managed to get yourself off without any major issues, but ameliaflowers please be sensible and involve your team, dont go it alone. As i said prior talk to the team and find out why theyre delaying the wean, and see if you can come to a compromise. Be patient, you will get there, it just takes time. Hope youre feeling a bit better in yourself today xx
Your faith in doctors is not well placed . My experience has varied from misdiagnosis to incorrect dosage to being prescribed medication for schizophrenia instead of prednisolone !
I agree you did say it was personal experience, but you also suggested that ameliaflowers should try reducing herself and seeing how it goes. Emma and others didn't think that was a good idea and I would have to agree - some professional input is needed to reduce, not going it alone. I am not on pred now because it seems not to work for me now, but when I was on and off it and on for long periods I found that reducing too quickly or going down and then up when needed actually resulted in me being on higher doses for longer, so I'd be very careful with that.
I also have had quite a few bad experiences with doctors but I still wouldn't feel like going it alone with something like this unless I absolutely had to. Despite my bad experiences I don't think doctors are all incompetent or unable to advise on a sensible wean, though I have had experiences where they left it to me to do and I didn't feel at all confident that I could get it right - I would much rather have had professional input.
Amelia - so sorry to hear what you're going through. I don't have much to add to what others have said but I'm glad you found this forum and people who understand and that you keep finding it helpful to be here. I do think however well-meaning friends and family are, it is hard for them to understand fully without living it. Yes you do know you need the steroids currently but at the same time it's totally understandable that you're finding the side effects hard to live with and that you're frustrated and angry about the massive disruption, as anyone would be! Plus steroids themselves can really mess with your mood which doesn't help. I really hope the benra kicks in soon and you can start reducing and feeling better.
My last experience with a doctor was him prescribing prednisolone for gout . All the information on gout will tell you that you should use a non steroidal anti inflammatory !!!
Then the best advice for you is to find a new doctor if you’re not happy and keep getting bad advice (it’s what i had to do).
But anyway we’re getting side tracked from the original post. Amelia I hope you’re doing a bit better mentally with it all and I am also glad you found a site to vent
And As I said I’m glad that it worked for you, I just wouldn’t advise it to other people when you’re not their doctor and don’t know their full case history... I would feel horrible if my own misjudged advice led to the death of someone else (or even ‘just’ to them landing up in hosp when it would have otherwise been prevented)
You may choose to believe my faith in doctors is misplaced, but I don’t have enough faith in my own body to 100% ignore advice (I May debate and compromise with docs but I don’t fully ignore unless I know it’s truly bad advice... like stopping all pred suddenly despite constant a&e/admissions and years on it... something an ANs/doc have said in the past... luckily when I followed that advice I only landed up in resus and a 9 day admission... now I ignore unless it comes from a doc I trust or the doc can explain the reasoning and it’s sensible) , or my own knowledge to advise someone try stopping something a doc has prescribed.
I’ve had my own fair share of crap doc experiences and I’m sorry to hear you’ve had them too, but I know not to tar all docs/write them off due to the mistakes of others. I know that they are the main reason I am still alive and 1 good doc can outweigh and undo the work of the bad docs, and that usually everything is done for a reason so most docs don’t mind you questioning and compromising if you disagree.
I know it's tough and I went through 3 difficult years aged slightly older but my issues began when I was 23 and until I was 26 it was not properly controlled but it is now. No 1 believe you will improve and the worst is behind you. No 2. Follow the medical advice you have as it's the best possible advice for YOU until someone who is a qualified medical person gives you different advice. Whatever you do, do not decide the best advice yourself without talking to a medical professional, that could be extremely dangerous. 3. Go get more medical opinions from a Consultant. 4. Listen to your mum, she knows you and will support you. You are so young at 18, don't give up, my asthma got better, don't ever give up, there is an answer, keep asking questions and asking for options, things will get better. Mine did.
Hello i started on a high dose of prednisolone when I was 19. I am down to 5mg now so my moon face has gone. I can totally relate to how you are feeling. I put on so much weight but my doctor assured me that once I’m back down to a low dose then the weight will come off. He was right.
One thing I really struggled with was the insomnia, I would sleep throughout the day but be up all night.
I haven’t got much advice to make you feel better but it’s a great thing your family are really supportive!
Do you take anything along side it such as omeprazole? Just to take some of the internal side effects away xx
I know how much steroids can affect you I have been on them for 10 years and now is the first time I am able to reduce them to 20mg daily......you must take them but be very careful with your diet . I too love exercise and you must do some kind of it to stabilise your weight ....
I 50 next year and it saddens me that a girl of such young age feels like ....
You have your life ahead of you and only you can control calories ....and begin to exercise again ....
I used to be a fitness instructor but due to health can no longer do that but I do force myself when able to get my ass to gym and do 12k steps a day ....
Generally yes diet and exercise (even gentle) may help loose weight (and not always with steroids and possible AI causing cushings), but it may not be wise to suggest to someone with a eating disorder history to calorie count in an effort to loose weight...
My approach is, accept your body and accept your weight. It will improve as the steroids reduce anyway. You may be able to improve it earlier, you may not, it depends on the drugs you’re on and how your body reacts to them, which just sucks.
Exercise if you can, when you can but don’t beat yourself up if you’re too poorly to. Don’t overeat, and have a healthy diet plan, but the odd day of crappy food is absolutely acceptable (I have the occasional day when I think ‘well I’m fat anyway so...’)
Remember you will get through this time in your life and things will improve so you’re back to the ‘you’ you were prior to your lungs kicking off!
We all have bad days ....and I am now on benralizumab, so things are hard for me ..but you to to help yourself and stop putting it all in others...it's a long long journey which we are all on ....
I'm glad you've managed to reduce your steroids and that you're able to get to the gym/do 12k steps etc but I really don't think its overly helpful to tell people to "stop putting it all on others" because that really isn't the case.
As I'm sure you know high dose steroids even over fairly short periods of time are notorious for making people gain weight (through fluid retention, increased appetite and just straight up gaining weight) no matter how hard you try. Some people are lucky and don't suffer too badly with that as a side effect and so can manage their weight ok on them, others however will gain a lot no matter how much they try to reduce calories and exercise.
Also exercising often is not possible with severe, uncontrolled asthma. I'm frequently told to try and exercise more but as soon as I point out I've spent a week out of each month in hospital this year and in the run up to an admission struggle to get to the bathroom (when well I have no issues with distance etc) and ask what I'm meant to do they all go mysteriously quiet!
I think Emma has summed it up best really, we can all do little things to try and help manage things but realistically it isn't always possible and dealing with severe asthma is hard enough without beating yourself up over things you can't help!
I'm also so sorry to hear about your struggles! I won't lie, exercise has never been my thing so I don't quite understand the perspective from being an ex-gymnast like you and Emma but I can definitely understand the struggle of weight gain etc from high dose pred - especially at a young age and being a student.
I was stuck on a maintenance dose of 35mg for over a year and gained SO much weight. More than anything I hate the moon face - I feel like despite the obvious weight gain the roundness of my face is way out of proportion with the rest of me still. I'm now down to a maintenance of 20 which is a bit better, but it only really makes it easier to maintain rather than lose weight.
I kept getting really unhelpful comments from some consultants in hospital too, basically asking why I wasn't doing more to try and lose weight! But no-one actually wanted to give me any tips on how to do that with uncontrolled asthma!
It really helped me when I saw one consultant on an admission who actually said she thought that with the restrictions on my activity and high steroid doses just the fact that I had managed to vaguely maintain my weight for a while was a real achievement! And while it isn't easy to accept what should be a temporary problem, it is important to focus on all your achievements, no matter how small they might feel.
And most importantly, please, please don't try to throw out the steroids! They are keeping you going and even without the risk to your asthma stopping them suddenly can cause all sorts of issues generally too.
I also HIGHLY recommend anything jellycat - I have a small melon bag called Helen that I keep my medication in for hospital trips and it never fails to cheer me or the staff up!
I'm so sorry to hear you are going through this. I have gained a bunch of weight from recent prednisone bursts. It's such a frustrating additional thing to go through when you're already frustrated by an overreactive immune system and pair of wonky lungs.
Make sure you are drinking plenty of water and reducing your salt intake. Amp up your fruits and veggies and try to walk more if you can. The weight will come off (a lot of it is water weight) but I understand the indignity of it!
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