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Steroids and weight gsin

Happy-51 profile image

Finally my infection is under control and I’m getting better.

I’m feeling incredible down over how I feel, fat bloated and yuck

Every time I get well and get back to the gym I get ill again and I’m back to square one.

I have 5 collapsed discs, as well as brittle asthma and a bone marrow issue which leaves me constantly anaemia.

Sounds like excuses and I guess in some ways it is because I think what’s the point. What’s the point in doing it all just to get knocked on my behind again.

Been on 60mg for nearly 2 weeks now and 40mg for weeks before that. I’m so bloated right now.

How do you all find that motivation again, I just can’t be bothered but I know I have to be bothered.

I need to lose weight, and serious weight loss is what’s needed.

I just don’t know where to start anymore.

I’ve tried everything.

25 Replies

Please don’t beat yourself up about your weight gain. So many of us have been there and understand what low self worth feels like.

I tied myself up in knots over many years until a penny dropping moment where I suddenly thought of the steroids as the life saver they were and not fat producing evil things! “Fat or dead” became my saying and I would happily take the fat option any day from those 2 cards!

The feeling of “need to lose weight” is understandable, but it can only really happen when you are in the right place mentally with the strength to see it through and are strong enough to also “want” to make it happen.

My weight crept up after steroids and repeated ill health, but there can be light at the end of the tunnel.

Please concentrate on stabilising your health first and foremost.

One step at a time.

Once that is stabilised you can concentrate on you.

Find a plan that works for you and go for it.

Personally I shed 6 stone with Slimming World and have kept it off for 2 years now. I have seen others with similar results, some more and equally some less and for some it just wasn’t for them. That’s why I say, find something that works for you, for your lifestyle and something you will be able to continue with as it isn’t going to happen overnight (sadly!).

For any system you need to embrace that things will have to change as doing same old, same old will not bring about changes to your body.

I wish you well and a healthy and happy 2020 x

Happy-51 profile image
Happy-51 in reply to Echoblue

Wow that’s amazing well done.

And yes I’m the same with the steroids or dead thing but right now I feel fat and lonely.

I just joined a 90 day programme to help me get on the right road.

I just feel zero self worth right now which doesn’t help.

Thanks for positive message it’s much appreciated

Echoblue profile image
Echoblue in reply to Happy-51

Take it one day at a time and you will get there.

Be gentle with yourself as you are going through so much with trying to get your health on track as well, you can’t pour from an empty cup! ...... and do speak to yourself the way you would speak to/support a friend. That was such a positive learn for me and once I ditched the guilt and learned to support myself positively, that positivity multiplied.

On the zero self worth, find just one part of your body that you love - for me it was my nails - I had begun using nail wraps and they were beautiful (sadly had to stop them for a bit as my brittle asthma and frequent A&E visits meant for sats probe I couldn’t wear them until things stabilised, but nonetheless it gave me the love I needed at the time). I also loved my lips and wearing bright lipsticks. Work on appreciating that part and adding other bits to your like/love list!

It won’t all be plain sailing but it will be worth it.

Do reach out if you need support. Being lonely is so hard and there are so many lovely people in the forum that any time day or night, someone should be around. X

Happy-51 profile image
Happy-51 in reply to Echoblue

Yes the nails do cause issues but like you I do love pretty nails.

I will try to do as you say.


Yatzy profile image
Yatzy in reply to Echoblue

You’ve raised so many helpful points, Echoblue, and given us all, as well as Happy-51, such useful advice.

Thank you 🌹 and wishing you a very happy and healthy new year 2️⃣0️⃣2️⃣0️⃣

Hi .now the feeling.try a little swimming.and relaxing.take each day as it comes .hope this helps

I absolutely understand the feeling that just as you're getting better, all looks on track then wham another infection knocks you out; and now it's so cold, I can't even walk anywhere much. One step at a time is definitely the way to go. Look for the good things about yourself - no-one else has your low view of you, do they? Some days just soldiering on is the only option, other days, the sun comes out and you feel you can climb this mountain. Hold on to the sunny days.

Yes I am in the same situation. I have to be on steroids every year. I have gained so much weight and it is so frustrating. But you rightly put it "be fat or be dead"

I am just recovering from very bad asthma.

But I cannot get into my clothes.

Don't lose heart my friends. Just concentrate on getting well . And then there will be time to shed that extra weight gain.

Stay Healthy

Happy-51 profile image
Happy-51 in reply to Cher04

I guess I just don’t feel very pretty right now.

And yes of course breathing is much more important but I’m just not feeling nice about myself.

I’ve stupidly just stopped my steroids dead, which has messed with my blood sugar levels this time and I’m not diabetic.

I’m just tired of feeling bloated.

Echoblue profile image
Echoblue in reply to Happy-51

Please seek medical attention as stopping steroids like that can cause real problems. A specialist centre at a hospital stopped mine abruptly about 10 years ago after deciding I was steroid resistant and it totally knocked out my adrenal glands so they stopped working altogether. I had months of additional medication and in combination with excellent advice from another clinician meant I could support the adrenal glands to recover and thankfully they did eventually return to functioning again.

Please seek medical attention and get the docs to do a Cortisol level check. Take care.

I'm with you! I have gained a lot of weight from having to take hydrocortisone every after developing adrenal insufficiency from being on so much prednisone to treat my asthma. I just started a low-carb diet yesterday and am feeling a bit lethargic but looking forward to a month of no sugar, flour, or alcohol. I'm focusing on fitting a bit better into my clothes rather than the numbers on the scale.

It's so frustrating because we're already so miserable from our symtoms and feeling yucky and then to have the insult added to injury of also gaining so much weight and not looking like ourselves and being so bloated--seems unfair! I also am so pale and tired-looking. Blech. I empathize! Hope you can take it a day at a time and first and foremost that your health improves. Sending a hug.

Happy-51 profile image
Happy-51 in reply to hilary39

Thank you, best of luck with the diet.

I was told I have candida+3 today and having blood test for cortisol level as they think I have adrenal failure/insufficiency. Apparently both that and candida can go together?

They are doing lots of best tests do we shall see.

In case you do have adrenal insuffiiency, I'll tell you everything I wish someone had told me because I had to learn a lot of it the hard way.

First of all, it's a serious condition and very important that you take your medicine every single day at the same time. Cortisol is necessary for the body to function and when our adrenal glands are supressed and not making enough cortisol, it slows down our digestion, organ functioning, immune system and more. I had an adrenal crisis after weaning off prednisone (which was how I was diagnosed with AI) and crises can be life-threatening, which I hadn't realized was even possible.

So be sure to take your meds exactly as prescribed, you can either do 7.5 (or so) prednisone or 20 mg (or so) of hydrocortisone a day--your doctor will give you an exact prescription depending on your blood cortisol level. It helps to break the dose into a few times a day to keep your cortisol steady; for example I take hydrocortisone and break my doses into 10 mg at 8:30 am, 5 mg at 1 pm, and 5 mg at 5 pm

It's important to get a lot of sodium and potassium in your diet with adrenal insufficiency as those electrolytes get out of whack.

I'm not a doctor so please take all of this not as recommendations but just as my sharing my experience.I feel like my journey has been a little fraught because (1) in spite of having taken prednisone courses for years, none of my 5+ doctors (pulmonologists, allergists, generalists etc.) ever mentioned that I could develop adrenal insufficiency (2) when I did develop it, I had to find an endocrinologist and wait for an appointment to get the right dosing and felt miserable in the interim (3) when I had my adrenal crisis none of the doctors or nurses at the hospital realized what was going on for hours and I was throwing up all over the place and totally terrified (4) I have learned about how to care for myself through websites, a support group, and one brief appointment with an endo. The key things are to:

-always keep 100 mg bottle of hydrocortisone with you in case of an emergency (if you get in a car accident or need surgery you need an emergency dose to help your body handle the shock)

-wear a medical bracelet that says "adrenal insufficient steroid dependent"

-keep instructions in your wallet for an emergency as doctors and nurses aren't always familiar with adrenal insufficiency

here are some good letters:

-know that you may need to updose in times of stress or sickness (i.e. increase your hydrocortisone or prednisone by a few mg a day)--see here for more info

I hope this isn't overwhelming, just wanted to share as I'm very empathetic and again, wish someone had told me all of this at the beginning!

Take good care and let me know if you have any questions about the above-

Happy-51 profile image
Happy-51 in reply to hilary39

Thank you that’s all really helpful.

Can I ask how it made you feel?

I can honestly say I feel absolutely awful.

I’ve been so ill and now this and candida.

I feel bloated, beyond exhausted, I ache, I’m craving salt and then sugar.

I’m an emotional mess.

It’s 3.15pm and only just got out of bed to shower.

I’m so incredible down and fed up with it all.

Sorry that’s a big woe is me reply to you but I do feel woe is me right now.

hilary39 profile image
hilary39 in reply to Happy-51

Are you taking any steroids right now? If not you might need to be as low cortisol can make you feel really awful. You may have tapered too quickly for your body or if you are indeed adrenal insufficient, then you will be having low cortisol symptoms until you are medicated.

When can you get in to see your doctor? You may need to be on a low dose, even just 5-10 mg or prednisone, day for now. I'm not a doctor though so I don't want to be giving any advice about meds! Just worried that these sound a lot like low cortisol symptoms.

When mine is low I feel exhausted, flu-y, out-of-it and spacey, nauseous, and sometimes my sides hurt. And I know what you mean by beyond tired, I'll sleep 9 hours and still feel totally unrested.

If you start throwing up at all, get to the hospital or urgent care asap.

So sorry you're so miserable!

Happy-51 profile image
Happy-51 in reply to hilary39

I have been sick, and feeling almost like I have low blood sugar like I’m going to faint.

And bad upset stomach. Aching and an exhaustion like I’ve never had before.

I’m having two steroid nebulisers daily. Not sure it they are the same.

I’m back at doctors Tuesday morning for more blood tests. Asthma consultant is the 15th.

I spent most of the day crying in bed, emotionally low and worn out.

I just feel so utterly annoying, I hate this woe is me feeling I have.

I really appreciate your replies so thank you.

hilary39 profile image
hilary39 in reply to Happy-51

Are you still taking the oral prednisone? Unfortunately the nebulizers with the steroids shouldn’t help with your cortisol levels :( i would consider taking a little prednisone and see if you feel better, it really sounds like you have low cortisol which can be life threatening. And I’m sorry to keep reiterating that, I’m not trying to freak you out. But it’s important to know that if it turns out you do have AI. I would not wait til the 15th to start taking prednisone or hydrocortisone.

I live in France not the U.K. so not sure how things work there, can you go into some kind of urgent center today or tomorrow and get an emergency blood check and prescription for hydrocortisone if your cortisol is indeed super low?

Happy-51 profile image
Happy-51 in reply to hilary39

Waiting on results, they are repeating it again Tuesday for some reason.

I have an emergency pack of preds so I can take a few.

I have googled it and it seems I have most of the symptoms, and some of the ones that are rarer. So I guess no wonder I feel awful.

Thank you for the help

hilary39 profile image
hilary39 in reply to Happy-51

Ok take good care. I empathize, I really do. I have been so miserable at various points this past year when my cortisol got super low. Keep us posted so we know you’re ok!

Echoblue profile image
Echoblue in reply to Happy-51

Once over this crisis don’t give up hope if it is adrenal insufficiency. I took Siberian ginseng which supports adrenal glands whilst they recovered (took alongside the hydrocortisone as body no longer producing Cortisol.)I took both for around 4-6 months to give adrenal glands chance to start recovering. Then very very slowly I started reducing the hydrocortisone and had regular Cortisol tests to check levels were staying up and thankfully they did. You need a very supportive GP who will assist with this process as mine did, but delighted to say mine did recover and I am now not on any hydrocortisone. It is so key to work with your clinicians as adrenal insufficiency is serious.

As an interesting footnote I carried on taking Siberian ginseng as it also supports the immune system and happy to report I very rarely get any of the lurgies that my friends and family pick up! 🤞🏻🤞🏻 - hope I’m not tempting fate here!! Have been taking it for around 8 years now.

Take care and was so relieved to hear you were being taken seriously over this 👍🏻x

hilary39 profile image
hilary39 in reply to Echoblue

Thanks for posting this you had said this before and it slipped my mind to buy some—how many mg a day do you take?

Echoblue profile image
Echoblue in reply to hilary39

I usually take one tablet twice a day. (Sometimes only remember once a day to be honest). I buy mine at Holland & Barrett (if I am allowed to say that!) be careful not to buy the wrong sort as there are many ginseng’s around that do different things (Korean etc), but it is Siberian ginseng that supported my adrenal glands recovery.

Happy-51 profile image
Happy-51 in reply to Echoblue

Ok, I’m going to order that now. Thank you for the tips. Glad to hear you’re doing well.

get yourself a little better the weight will fall off,

I loss loads of weight at one point but i put few stones back on as steroids keep going up and down, your breathing comes first.

Happy-51 profile image
Happy-51 in reply to Superp

I know, but my mental health is crumbling and it’s hard seeing common sense when you feel shocking.

Hopefully I’m going to get to the bottom of it.

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