Steroids Side effect - CUSHING !!: Does anyone... - LUPUS UK

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Steroids Side effect - CUSHING !!

Iamnotmydiagnosis profile image

Does anyone else suffer from stretch marks/fatpad/biggertummy? So I had these striae around my thighs for several months and it was getting worrisome so I told my consultant and he suspected it was steroid-related so he stopped my prednisone completely ( I was on 5mg ). I started off with 30mg then slowly reduced it up to 5mg. I have been on prednisone since I got diagnosed in 2018. It hasn't been particularly long so my rheuma doubt its Addison's disease or even Cushing. If I was, I wouldn't even be talking to him at that moment and would probably be admitted to the hospital already. In addition to the stretch marks, I also had a fat pad on the back of my neck and my tummy area also appears to accumulate more fat than anywhere else in my body. I was worried that my symptoms were similar to Cushing's syndrome which got me all anxious! Finally, my consultant asked me to come in for a blood test to test my cortisol level- apparently, it was in the normal range and thankfully it is not Cushing! He put me back on 2.5mg steroids said not to worry as the striae will disappear in a few months. However, I do not feel content with this and I am still anxious somehow. Hence why I would like to know if there's anyone else who is in or had been in a similar situation to mine? Thank you, guys.

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Iamnotmydiagnosis
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PMRpro profile image
PMRpro

What you are describing IS Cushings syndrome - that is the medical term used to cover all the visible sideeffects that develop in many patients on corticosteroids. It isn't the same as Cushing's DISEASE, In the syndrome it is due to a known factor: the exogenous (from outside the body) corticosteroids you need to manage the inflammation due to your illness over a long period. In the disease, they do not know where the extra corticosteroid comes from, it may be a tumour or other medical cause that makes the adrenal glands produce more cortisol than it should.

Addison's is the opposite, not enough cortisol available, so while you were on 5mg (about the same sort of amount the body requires to function) Addison's wasn't likely to be a factor and it has totally different symptoms. You don't say how long he stopped the pred for - but stopping it suddenly when you were on 5mg COULD have caused you to have an adrenal crisis - while you are taking some pred, your body doesn't make more. It's like your house heating: if you have a woodburning stove in the room where the thermostat is it warms that room enough for the central heating boiler not to come on. As the fire goes out and the room cools down, the boiler comes on instead, The central heating boiler is the adrenals, the wood fire your oral dose.

The striae are often due to putting on weight quickly which you possibly did at 30mg? They are also often seen during pregnancy - but they won't disappear entirely, they will fade until they are no longer noticeable. Unfortunately there aren't really any treatments that work - they are probably due to stretching of connective tissue in the skin. I'm sorry to tell you that, but I didn't want you to be disappointed if they don't go away.

dermnetnz.org/topics/stretc...

Some people never develop them - neither in pregnancy or with steroids. I've been on pred for well over 11 years and have none at all nor did I get any when pregnant. I had lots of the other Cushing's symptoms really badly when I was on one sort of steroid but when I was switched to another and went on a low carb diet I lost 35 lbs in weight and the fat deposits melted away, I lost inches around my waist within weeks even though I was on 15mg pred still - it can be done. A low carb and reduced salt diet helps with the puffiness a lot - and cutting processed carbs achieves a lot of it at one fell swoop.

Iamnotmydiagnosis profile image
Iamnotmydiagnosis in reply to PMRpro

WOW. Thank you so much for your in-depth explanation. It does makes so much sense now! So from what I understood, what I just described is Cushing Syndrome (which I believe I have) as my consultant mentioned that my striae are likely related to steroid-exogenous Cushing's and not Cushing Disease. I thought they were the same all along! Thank you so much for clarifying.

I am 27 years old, weighs 53kg and no kids hence why the stretch marks I have on my thighs are really bothering me plus I have a pale white complexion which makes the striae appearance a lot worse. I try to eat healthily but given the fact that I come from an Asian background, carb is something I find most difficult to avoid. Thanks again for your response, I learnt something new today! Really appreciate it :)

PMRpro profile image
PMRpro in reply to Iamnotmydiagnosis

My pleasure. I know you hate them - but they really should fade eventually and just be silvery. You obviously haven't gained a lot of weight - but if you eat real food and not processed junk the carbs are less important.

Littleandperfect profile image
Littleandperfect in reply to PMRpro

Oh that’s cheered me up ! Diet starts today ! I also now have AF .. so I haven’t felt much like exercising recently...

PMRpro profile image
PMRpro in reply to Littleandperfect

Just switching to a low carb diet straight off can be hard work - leaving carbs doesn't bother me but one suggestion is to cut carbs by a quarter at first, then another quarter and another until you get to the level YOU need to lose weight. Some like me have it hard, I have to get to a very low carb intake to lose, maintaining weight is much easier!

This site is really helpful:

dietdoctor.com/low-carb/foods

you don't need to join, just read to know what is what and there are loads of low carb recipes online if you you look

Littleandperfect profile image
Littleandperfect in reply to PMRpro

Thank you so much for your advice.. you seem very knowledgeable.. BTW .. my profile name is a joke !! Never have been .. certainly now never will be 🤣

PMRpro profile image
PMRpro in reply to Littleandperfect

I'm short, never been what you'd call little since I had measles at 5 or so! But when told good things come in little packages I usually point out so does poison ;)

LisaSnow profile image
LisaSnow in reply to PMRpro

Can I ask, what type of steroid did you switch to that decreased your "Buffalo hump"? Which one were you originally on that seemed to have bigger side effects on you? Thanks!

PMRpro profile image
PMRpro in reply to LisaSnow

Methyl prednisolone/Medrol was the horrible one - the methyl bit is supposed to make it more antiinflammatory but all it does for me is make the adverse effects worse! The hump is a fat deposit - and it was the weight loss that reduced it as it reduced the other fat deposits. It is a property of cortisol/corticosteroids that makes the fat end up where it does. No idea how it knows mind you ;) I'm fine on both prednisone (currently) and prednisolone (originally).

I've been on prednisone sine 2012. And it had hindered my health with retaining lupus. Take things slowly while tapering off. You may feel like you have the flu. With prednisone on a high dose it creates water pockets to make our belly look big have a moon face and have a hump on our back. The only thing you can do is drink water , tamper off prednisone and watch your salt intake.

PMRpro profile image
PMRpro in reply to

Pred can make you retain fluid, hence the advice to keep salt intake down and cutting processed carbs is critical there, but that stuff around your waist isn't water - it is fat deposits, influenced by the pred. And fat only goes away by diet, mainly cutting carbs.

daniel55 profile image
daniel55

Hi I have similar symptoms I have had a fat pad at the back of my neck for nearly a year I find it difficult to get comfortable at night stretch marks I have given up on trying to get rid of I am covered in them I have osteopenia and have got my next dexa-scan on the 1st of April I have been on prednisolone for nearly 35 years various doses the last 10-15 years on 10mg daily in January I was cut down to 7mg daily I have had several fractures in my back over the last 2-3 years so my rheumatologist wants this dexa-scan done as soon as possible to see what medication is best for me take care xx

Littleandperfect profile image
Littleandperfect

Oh goodness.. do see my post this morning about Cushings .. I too am worried

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