Cushing Syndrome?

Hi Everyone,

Has anyone else been on and off steroids which has caused cushings syndrome?

I have now been told that there is nothing that can be done as i cant reduce steroids anymore. Just wondered how common this is when taking steroids. The thing that gets me the most is the weight gain even though i dont eat excessively and exercise, yet from my appearance (moon face and round stomach) people assume i am obese due to over-eating :(

17 Replies

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  • I got cushing syndrome this summer because of 3 months of high dose steroids. I gained a lot of weight, had thin skin which cut easily (and from a combination of the last two awful stretch marks), moon face and I also had quite a few problems with my blood pressure.

    It's awful, and to be honest the doctors don't care. My consultant didn't even care and although me resp nurse was sympathetic there's really nothing to be done :(

    I found drinking lots of water helped and also a multi-vitamin.

    Hope your ok, sorry there's nothing more i can do x

  • watch the BBC documentary on buteyko in scotland

    Hi Libz

    Have you ever watched the BBC documentary from 1998 on Buteyko?

    3 very severe asthmatics on long term steroids make remarkable and sustained progress in 1.5hours training for 5 days from a Russian practitioner who makes no apologies for cultural differences and niceties. One other dropped out as a result of the impoliteness.

    It was shown on BBC on august 8th 1998.

    How you breathe has a massive effect on your health.

    If you breathe incorrectly then we inadvertently increase our symptoms.

    When you exercise i would guess you breathe through your mouth, it is far better to breathe through your nose (in and out) though this may not be sifficient for you given your current breathing habit and requirement (which can be changed by a careful programme designed to you). The start is learning how to manage your breathing through relaxation.

    At your severity it would be absolutely essential to learn from an expert practitioner, one who trained through practice rather than theory in a classroom. They would advise you not to change your medication at all and to only do so with your asthma team. They would also discuss how to broach your learning of Buteyko with your medical team as they may be reluctant to advise you that it may be beneficial.

    Good luck with your health - asthma and in general

    Owen

  • Because of 20 years of taking steriods, I have gained weight and have the moon face. For years I disliked what I looked like. After many years of feeling so negative about my appearance, I have changed the way I think, because it is not outward appearances that matter, the inner self is still the person you were before you started taking steriods. When I first became overweight clothing ranges were limited, but things are a lot better now. Saying that though personally I couldn't care a less what I am wearing as long as I am comfortable. My friends don't judge me, and I find that since I am quite a cheerful and outgoing person to the outside world, my appearance doesn't appear to bother anyone I meet. To anyone who reacts to a person's outward appearance in a negative manner, is the person with the issue.

  • Hi libz

    Cushing syndrome is a difficulty for many people who are on long term steriods, so we asthmatics are not alone with this problem. I too have developed Cushing Syndome and acne before, and it only went a year after reducing the steroids. alough my weight gain in Kg wasn't too excessive I did find I lost a bit of confidence. However, exercise helped a little with weight management, and the best thing I found was gentle swimming, so I do recommend it if your asthma allows.

    But as others say it is what on the inside that matters and the good control of your asthma with steroids must be the priority. If like me you, may find that you have sronger hair and nails whilst on steroids, so emphasise your best physical attributes to boost yur self confidence, and the rest really doesn't matter.

    In addition, 'Buteyko'd...' I'm delighted that Buteyko worked so dramatically for you. However, I do wonder why you answer many posts with pure promotion of the method. Yes, it can be helpful especially to those who struggle to contol their breathing. However, it doesn't work for everyone and I believe it has made my problems worse, as I now hypoventilate. After living in the southern hemisphere and reaping the benefits of alternative asthma treatments, it's great to see a little promotion of alternative treatments, but please try and answer the posts more constructively, rather than pushing Buteyko.

    Best wishes to you all.

    PB x

  • Buteyko'd,

    Can we ask if you are a qualified asthma/breathing specialist?

    I have brittle asthma/allergies, it's genetically inherited, even my great gran suffered, very rare for her generation.

    I do breathe properly - I am a yoga fanatic which focuses on the body as a whole, including posture, not just breathing. I'm on the brink of being prescribed Pred and I think yoga's keeping it away. But as my qualified instructor says - it'll help but not be a miracle cure. I even impressed my breathing physio last week with my knowledge of good breathing techniques.

    Healthy living/alternative therapies are great alongside the medication but sadly wont make our asthma go away, mouth breathing did not cause my asthma.

    Good luck Libz - weight gain on steroids gets most down, at least if you're exercising you'll be toned and healthy. I'm the rare opposite - lost weight when on 'em last year but still ended up with moon face, had a lolly pop head for a while!

  • Thank you all for the responses. I appreciate it, just got to learn to rise above nasty comments about my weight. I do enjoy swimming alot so would suggest it to anyone with asthma that can handle it. I am eating healthily and doing as much exercise as i can just not losing any more than 1-2kg then within a few weeks it has gone back up again. Fingers crossed once this cold weather has gone away i can try and come off the steroids :)

    Buykeyo I am not adverse to trying alternative medicines as i am already seeing a healer for my arthritis but please be aware that not every case of asthma is due to breathing techniques. I wish it was that simple sometimes!

  • Interestingly, when I lost weight when poorly last year, females were really impressed and admired my figure. My male friends/partner however would look at me in shock and say 'Get some weight put back on'. I've put a bit of weight back on and thankfully lost the lolly pop head, a male friend recently commented I look so much better now and that I looked really poorly before.

    Swimming's good if you can, I do tend to frighten our young lifeguard with my wheezing/inhaler at the side of the pool - bless him!

    Doesn't it annoy you when folk point the finger as though your condition is your fault, I've been told inhaling menthol, eating big roast dinners and many other crazy things will cure me! I think I'll start a post on that one.

  • Hi Libz, (long post)

    Well done on keeping positive, its hard to do but forgive people their ignorance, they don’t see the real person on the inside at all. I was very self conscious of my appearance for a long time - I now ignore comments and forget about them but it can be hard. Sometimes it helps to smile and show that their comments do not hurt you (even if they do) as somehow some people seem to like a bit of vindictiveness and enjoy seeing their barb strike its target. Keep the chin up, they are the ones with the issue as Katina mentioned.

    I do promote buteyko given the personal benefit I have gained from it (and continue to) at a time I had been told that I wasn’t breathing enough and after more than 10 years of puffing and trying to breathe more that was reversed through learning how to breathe correctly. I do find there is a wide variety of experiences out there with it and not everyone is positive about it. I am amazed however at how badly understood it is even by medical professionals that is consistent with the multiple bad experiences detailed by people on the forum - with ambulance personnel, first aiders, GPs and stand-in doctors even in hospitals who somehow don’t care correctly for the asthmatic in front of them.

    PB I am trying to answer the posts constructively! I am also not trying to confuse anyone or to cause any offence. Most of what I have learned about breathing is commonsense in relation to better breathing management….just common sense is no longer that common. Where I genuinely think there is something sensible I can suggest then I try to do it while cautioning to do it with the medical team’s supervision. Critical aspects that I have learned through buteyko, correct breathing during exercise and everything else are overlooked as unimportant to one’s health. Even a sigh or sniff every 5 minutes is enough to be deemed hyperventilation with buteyko- whereas only about 5% of hyperventilation (the most obvious kind) is deemed hyperventilation by some). With your current hypoventilation is this as a result of lung remodeling or damage or other?

    In relation to buteyko, many people learn the wrong technique from the incorrect trainer (or from a book/other) and apply the method in the incorrect way which actually worsens their condition by increasing rather than reducing their minute volume. For that reason, I believe I am well able to communicate the benefits of buteyko from a successful point of view. I learned from a practitioner who adapted the exercises to me (several times) and they worked and continue to work when I apply them.

    Lucy 007, you mention yoga focusing on the body as a whole, I would fully endorse the holistic approach and am a firm believer in the massive benefits of correct posture, hydration, healthy nutrition (and not processed food empty calories), proper exercise, rest and work/ life balance etc etc and would correctly state that buteyko isn’t just some breathing technique it’s a lifestyle choice. For me the choice is the correct amount of exercise using the proper breathing volume whilst exercising (hence I do not need to use a reliever when I swim- I enjoy swimming too). Well done for applying yourself so diligently to yoga and for sure it is helping to buffer you from worsening symptoms. You may or may not be aware that the Mayo Clinic in the USA cites Buteyko, pranayama yoga and the Papworth method as the three greatest hopes for asthma in the future (or other similar wording). Buteyko has had many medical trials for good reason and is also the subject of many smaller studies (as trials are very expensive and usually funded by drug companies with an eye on downstream revenues- nothing wrong with that but hard to get funding for trials otherwise).

    Correct breathing during exercise or yoga is one thing – the rest of the time is another. Do you ever breathe through your mouth? Swimming? (I do- you sound like you do), sneezing, coughing, talking, sleeping, eating, drinking? (I don’t). About 25-30% of the effect of buteyko is switching to nasal breathing. The rest is careful chosen exercises adapted to you to reduce your minute volume of breathing. Healthy living and complementary therapies can insulate or buffer you from your symptoms for sure. I agree that you are likely to have inherited aspects of your genetic makeup from your Grans’s side of the family. We also pick up and copy the way we breathe in day to day situations from our family. I did and had to reverse it. Several of my parents siblings have developed respiratory issues later in life (their lifestyle protected them through exercise etc til they changed at some stage).

    Have you ever thought about trying buteyko? Yoga is not that dissimilar to buteyko gentle exercises.

    Better more healthy breathing is the goal for everyone. It is being ignored by society generally (up to 80% of kids now habitually mouth breathe- there are endless studies on the bad effects of hyperventilation on us – mouth breathing is hyperventilation). Buteyko is simply a way to get from A to B, a guide to healthier breathing from not so healthy.

    It may not suit all but it may also suit more than is generally thought.....huge links to many other issues like anxiety, attention disorders, migraines, etc

  • Hi libz. When I get down due to lovely fat face, buffalo hump, stretch marks ,osteopenia of the bones and now the steriod diabetes. I gotta sit and seriously ask myself. Wot are the options, I knew the possible risks when starting the prednisolone and then ask myself would u still take the prednisolone. I always answer yes I would. As better having some life than stuck in a chair no puff and no life. Strangers comments I can shrug them off. Family comments I find upsetting. Thankfully my brother learned a lesson. The day he went on about my weight and appearance was the day I ended up

    In hospital.

  • Butekyo

    NO NO and NO!!!

    I do not breathe through my mouth!!!

    My condition is genetically inherited and I started with asthma after working as a screen printer - no surprises there, and YES I did breathe through my nose then - I used to get spots and irritation up my nose before my asthma started.

    As for hyperventilation, there are people on here that go blue and worse - because they simply cannot breathe.

    Please don't give advice to people on here about your favoured technique - it should be left to a specialist not done on a web post - I would NEVER dream of trying to teach someone yoga - I am not qualified, a simple 'I tried butekyo and it worked well for me' will do.

    As for me trying it - NO - after I read a book on this technique/asthma that stated my inhaler - Symbicort was rubbish - it has really helped me, it also stated it thought asthma was in the mind and simply hyperventilation - that is really dangerous advice. It also advised a diet of raw veg, fruit and seeds instead of the 'conventional' western diet - I don't think so.

    I am currently under the care of specialists and have recently been to see a breathing physio - who has very pleased with my techniques and said I don't show signs of hyperventilation - it's one of the first things they look into.

    Both me and my Dad have been in ressus for asthma/allergy so I know how serious the conditions can be. I would NEVER dream of insulting my Dad by asking if he mouth breathed as that may have caused his anaphylaxis after a wasp sting

  • Some things help and some things don't. With asthma its all about getting the right combination. I can get my respirations down to 4 per minute but still feel like pooh. Some res my reaps are elected and I feel great ....

  • Some things help and some things don't. With asthma its all about getting the right combination. I can get my respirations down to 4 per minute but still feel like pooh. Some times my resps are elected and I feel great .... Then suddenly it's pants.... When it's pants only thing that helps is the meds. No matter how fast or slow I breath

  • i have it after being on 40mg for a long time :( i understand *huggles* i hate it :(

  • reply to gussypoo and lucy007

    (Delayed reply due to being snowed under at work)

    Sorry Libz for this being dragged off on a tangent. Relaxation techniques could reduce your breathing to help you get better control with your current medication levels. Obviously under your doctors/teams sayso and being guided by a trained practitioner.

    Gussypoo, The number of resps per minute is not as important as how big each breath you take is. If you are breathing fast as your regular pattern then switching to slower breathing will not help unless it is part of a sustained programme. If symptoms are coming on hard and fast then meds are the correct response. With better control then there is a short window of opportunity to address the situation through breathing control techniques. If reduced breathing is done incorrectly, the volume per minute stays the same as our medulla controls our breathing by maintaining CO2 levels thus controlling our bodies breathing and also blood PH (co2 is one component to maintain healthy ph). So though breathing rate is down by half, each breath is twice as big leaving minute volume unchanged. Same volume equals same symptoms. Medication makes vital lifesaving difference in acute/stressed cases. As you said its about getting things right in combination.

    Lucy007,

    Not sure really how to respond. You have taken great umbrage at whatever you have read in the past. I am not sure what book it was but try not to associate everything about buteyko with it. Buteyko has had worldwide medical trials and is backed by the British Thoracic Society (grade B adjunct) and USA’s Mayo Clinic (one of 3 techniques including pranayama yoga) for good reason imho. Perhaps the book you read was in the pre or early internet days whereas nowadays everyone can simply google symbicort and side-effects if they wish to be aware of the downside of their prescribed medication. Perhaps the author wanted to be controversial with a particular comment- i don’t know.

    Your asthma and allergy response sounds genetically inherited. You may be able to protect or buffer yourself from your genes and their reaction through better healthier breathing. It is possible. It is hard work. It is not merely about nose breathing though its a good start. There is a step by step process devised that can be tailored to your particular circumstances. Its not all about the hyperventilation as currently limitedly recognised which you may not do at all, its about the other 90%.

    I can empathise with your obvious frustration with your poorly controlled asthma and vulnerability through your acute and alarming allergy response. Why you would think it would insult your Dad to discuss his breathing is beyond me. We can live a full life without a western diet, for months without food, for days without water but only minutes without breathing.

    The Western diet is and will be responsible for many of our ailments and complaints, diseases and illnesses that is increasingly recognised by many many people. I still eat a western diet but am aware of how poor it is and am making steady small step changes towards a better diet and lifestyle. Awareness is the vital first step. We are on the verge of a diabetes “iceberg” of which we have thus far only seen the tip – main issue will be and is the western diet and lifestyle which we will later all be advised to change. I intend to listen to the precursor quite noticeable global warning signs. Not a major leap of faith imho. There are many other western lifestyle icebergs out there not just diabetes......asthma being another.

    Iceberg is a analogy for something that looks small when first looked at but found to be 9-10 times larger under the water – alot like recognition or even definition of hyperventilation. Most hyperventilation is unseen, unrecognised and undiagnosed. Only the blue light variant (the very obvious kind) is recognised it seems even by medical teams, resp physios etc. If you can ever hear your breathing at rest then thats part of the 90% of hyperventilation that is unseen.

    When you swim your breathing rate (common for swimmers even world record and Olympic champions like Federica Pelligrini (Italy) suffer from this) is in excess of your metabolic requirements thus necessitating use of your reliever inhaler (perhaps the only time you breath in through your mouth). IMHO if you slow down so you do not bring on symptoms and then try and work upwards from there you would find greater progress even if this slows you down for 8-12 weeks. This would mean you would slow down for 3 months to adapt your technique to allow you to subsequently swim without symptoms thereafter. Possible? yes, hard work? yes, frustrating? yes.

    Anyway, given your apparent predisposition you may find that mere discussion further discourages you from trying buteyko now. Thats your choice. I would guess that it will eventually be suggested by your medical team.

  • Buteo , sorry but I ain't ever gonna be one for this method. Yes would love to be off meds but it ain't gonna happen. I applaud u in ur believe and promotion of this method but concerned as your replies to most post appear to promote it as the only true treatment and that's where the dangers lie. A lot of us would have more problems and attacks if to suddenly use ur method only.....

  • I agree with Gussypoo and am worried people will ditch their meds and try your favoured technique and become very poorly or worse.

    As I'd mentioned, I'd already been referred to a breathing physio as my asthma became a real pain to control when I started my last job, (it has improved greatly since I left). They were really impressed with the techniques I use and what I was being taught in yoga. My medication use is decreasing and working better gradually.

    I do agree with a lot of what you say about diet but not to go to extremes, seeds/fruit/raw veg, as advised in the book I read is not the answer, can't beat a good balanced home cooked diet

  • Lucy and Gussypoo

    People should never ditch their meds or make any alterations to them without their doc's approval.

    Glad Lucy your meds and asthma are improving. Slow and gradual improvement is the safest and most reliable way.

    Home cooking is far, far preferable to hollow calories in processed food.

    Better healthier breathing is what I would advocate (be that baby breathing, yoga breathing, etc etc) for everyone (just its quite confusing what info is out there) and not just for those with asthma.

    Buteyko was what i used but it made me aware of the effect of just a bit of bad breathing during the day and its consequences. What i have found is that after i reset my breathing i no longer need to think about it too much, just when i have a cold or am run-down a bit or cannot get enough exercise in for some reason.

    Gussypoo, its a great help to use buteyko to get control of your symptoms alongside and crucially not in place of your medication. Over time, with consistent symptom free and improved asthma health there is a step by step process to reduce medication used by your doctor to reduce your medication.

    People should undertake buteyko after discussing it with their medical team and ideally should learn from a practitioner as success rates from books, home study dvds etc are very low as the exercises are not adapted to each person correctly and can worsen rather than alleviate your symptoms.

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