Inhaled Steroid Dangers and Side Effects

[Matman]

As suffers from Respiratory Disorders, most of us make a 'trade-off' (be it an unconscious one) by accepting the risks of both Oral and Inhaled Steroids in order to reduce some of the breathing difficulties experienced with our condition.

Having recently become aware that 'Inhaled' Steroids can give rise to the very same issues as Oral Steroids, I think this is a topic worthy of discussion and consideration.

Because the pathway for Inhaled Steroids is said 'not to be' systemic, many assume that they can therefore discount the types of systemic issues that occur with Oral Steroids but - from what I've been looking at - it seems to be the case that even doses of Inhaled Steroids that are 'not' consider 'high' can - when taken regularly - bring about the same problems as Oral Steroids.

Inhaled Steroids and / or the co-factors that manufacture's need to include in the Inhaler, can also sometimes irritate the lungs, possibly triggering or contributing to Respiratory Difficulties.

There are some Respiratory suffers that Steroids (Inhaled and Oral) seem to do little or nothing to help (because they are Steroid Resistance) - but who end up taking them anyway, often because the simplest and most cost effective approach from a treatment perspective is the 'suck it and see' one.

I don't know if there's a Test you can ask for that will categorically disclose 'up front' whether you are a 'steroid resistant type' -and whether steroids (i) cannot help you, (ii) can only help you a bit, or (iii) will only be of use at very high dosages - but I for one, would like to know 'to what extent' Inhaled Steroids are capable of reducing my symptoms - and to have such a 'Test' to address that question if it's feasible to do so.

It's tempting to jump to the conclusion that if (for 'example' only) you are on an Inhaled Steroid Inhaler, and are feeling 'better', that the Preventer Inhaler must therefore be contributing to the ease of your symptoms. While, undoubtedly, that will be an 'accurate' assessment for many suffers, here's 'just one' example (there may well be others) where things are not quite that straight forward .

Consider Duel Inhalers, that contain both an Inhaled Steroid and a Breathing Relief Drug, i.e. Long Acting Beta Agonist (LABA) which give you around 12 Hours of Respiratory Aid.

If you're taking such a Drug (typically) twice a day, you're getting 24 hour 'round the clock' breathing assistance from the LABA Component - so how do you know if the Inhaled Steroid Component of the Inhaler (which the LABA is combined with) is actually helping at all - or whether it's possibly even hindering? My understanding is that, for safety issues, you 'cannot' be prescribed a LABA Inhaler without an Inhaled Steroid Drug being included in the Inhaler Device, which means that you can't simply switch to a 'LABA Only' Inhaler to see if you feel just as good without the Inhaled Steroid that's always included.

I fully accept that Steroids (Inhaled and Oral) have a vital role to play in many people's treatment regimes, but it's important to be aware of the risks posed by these drugs, and to establish:

a) if they are actually helping (and to what extent)

b) protocols for getting down to the absolute minimum dosage

c) what, if anything, can be done - in advance - to preempt the impact on adrenal function

d) what Tests to expect and ask for regularly, to asses any damage steroids are doing

e) what regular medications, vitamin supplements, diets, exercise regimes, life-style strategies etc, are the most important for mitigating some of the negative effects of steroid use (whether inhaled or Oral)

Steroids make many lives bearable that would otherwise be intolerable, but non of us can afford be indifferent or lazy about acquiring a thorough understanding of the 'negatives' of taking them, nor about seeking guidance and assistance from medical professionals to ensure everything reasonably possible is being done to protect against the downside of a medicine regime that includes steroids in any form.

All thoughts welcome (and thanks in advance for sharing your views).

[Emmajayne75]

Like you I also worry about the effects of taking steroids, I have some serious side effects from oral steroids and will now avoid taking them as much as I can. I also worry about the inhaled steroids although I don't suffer the same side effects as with oral I am concerned that having taken them for many years now they may be part of the reason I have a degenerative bone condition plus I notice that as with oral when I have to step up the dose of my inhaled I seem unable to stop eating, not life threatening I know but when you've battled with weight all your life and worked hard to lose nine stone it plays on your mind.

Anyway I don't really have anything useful to add just wanted to let you know I also think about these things.

[frustratedasmathic in reply to Emmajayne75]

Hello Emma and Matman

Both your comments are excellent. Having lived with Asthma for the best part of 48years I too get side effects from the Steroid Inhalers the hospital and my own gp have tried everything on the market and I still get nasty pains all over my body. Currently seeing a rheumatologist as a young dr in the hospital thought that I had Fibromyalgia but specialist does not think so. I would like to know how does the Inhaled Steroid affect u? Did u get pains all over body moving intermittently? Also my lower back is very sore. Waiting to have an MRI but don't think that I will be able to go through with it as I am very claustrophobic had to abandon it last week. I was told that I was Steroid intolerant. But they still give me it. I'm hoping that now xolair is available on the Nhs for some Asthmatics that I maybe considered.

Also my Asthma is due to Allergies. Suffer with Eczema in the middle of my back and I think this is linked.

Look forward to hearing from anyone who has had similar issues.

Great website a lifeline for all those suffering with these very debilitating health conditions

Frustrated Asthmatic

[Matman in reply to frustratedasmathic]

I'm using Inhaled Steroids but seem to be somewhat Steroid Resistant. My impression is that they irritate my airways and cause, or contribute to, a sore right lung. However, I'm not a Medic, so all my comments should be viewed as personal opinion. Personally, I have not had any other 'severe' issues that I can directly attribute to Inhaled steroids. My Post was prompted by my ongoing personal research into various Respiritory Meds and recent awareness from that research of the risks of medium to long term steroid use. The impression I've got from recent information (published last couple of years) is that Inhaled Steroids can't be dismissed as 'risk free' and may give rise to the same risks as Oral Steroids, which can include a wide range of issues and side effects including - but not limited to - significant adrenal issues. Also, the point about ensuring Inhaled Steroids are actually helping rather than contributing to an individual's respiratory health is one that, in my view, requires regular re-assessment by patients and their Doctors.

[Matman in reply to Matman]

No problems or experience in those areas, so unable to offer anything useful on those points

[Hidden in reply to frustratedasmathic]

As someone who is hypermobile and is therefore very susceptible to back problems (including sciatica and issues with the piriformis) I am very aware that lower back pain can be the result of many things including insufficient support from the stomach muscles (which play a large part in supporting the lower back). How strong are your stomach muscles and do the chairs you normally sit on give you enough lumbar support?

[risabel59]

Apparently the Exhaled Nitric Oxide test can help to see if inhaled steroids are beneficial or not. And also help to phenotype asthma. Although apparently not perfect. Here is an interesting link to a paper published.

ncbi.nlm.nih.gov/pmc/articl...

[Matman in reply to risabel59]

Yes. Believe that's correct. However, you can - I believe - have a high FeNO Score but be one of the unlucky ones who are Steroid Resistant and therefore be unable to benefit much (if at all) from Steroids.

[Hidden]

I've been on inhaled steroids for almost thirty years now and as yet have not experienced any side effects that have given me cause for much concern. Yes, I sometimes get a croaky voice, but that doesn't concern me much. I'd rather have that than deal with what I know would be the consequences of coming off the inhalers. A gastroenterologist once tried to pin the blame for oesophageal thrush deep in my oesophagus on my inhalers, but I've yet to encounter a healthcare professional who agrees with that, given that there was no sign of oral or pharyngeal thrush at the time (which even the gastroenterologist admitted). I might also add that my younger son (put on inhaled steroids for asthma when he was three) had his bone density assessed when he was about sixteen years old. The clinician who did the assessment was staggered by the result. His bones were some of the most dense she had seen in a child of that age (and this was part of a research programme involving around ten thousand children from the general population). But then he had always been to schools that did a lot of sport, and he was quite a sporty child, despite the asthma

[Matman]

Glad to here you're doing so well on long term inhaled steroids. I'm guessing (hoping) that - given the length of time involved - you have periodic precautionary blood and hormone tests for adrenal / cortisol functions and other markers. As I said, for many Inhaled Steroids are essential and a good thing. Have you ever been tempted to test / evaluate - after all this time - whether you still need them, or can reduce dosage?

[Hidden in reply to Matman]

I'm not sure any doctor would dare reduce the dose. The one time I was on a dosage that wasn't sufficient I ended up in hospital. A recent food allergy screen (done by blood test) revealed a very high IgE count even though I came back negative for the sixteen or so foods checked. When the test was done I was symptom free (although I had had a sniffle and a sneeze in the morning - about six hours earlier) so the result came as a shock both to me and the consultant who had requested it. The fact that I was so well when it was done is, I think, testament to how well my asthma is being controlled by the medication I'm on. There has only been one occasion when I have needed to be put on oral steroids (thank goodness) though I suspect I may have had steroids via IV the time I ended up in hospital.

To be honest I'm not sure I have had the blood tests you mention, although over the past six years or so I've had quite a few blood tests done at the request of various doctors (consultants included) so they may well have been amongst them.

I'm on flixotide 250 at the moment, and at this time of year I'm on maximum dosage and I need to be, but that dose does get reduced in the summer. I have ventolin too of course, but I rarely need to use that (though I always have it with me), again testament to the fact that my asthma is properly controlled.

As the saying goes "If it ain't broke, don't try and fix it"

[Hidden]

Hello Matman

As a result of steroids I have suffered from ecchymoses and am crippled with pain at the moment. They have done loads of blood tests and I am waiting impatiently to see if they are the cause.

When I am on steroids I am painless and I breathe much better so there must be a link! We'll see but substituting antibiotics to steroids is not my cup of tea either so I'll see what is the best of two evils😃

Thank you for your interesting comment.

[Snowdrop27]

I fully accept that Steroids (Inhaled and Oral) have a vital role to play in many people's treatment regimes, but it's important to be aware of the risks posed by these drugs, and to establish:

a) if they are actually helping (and to what extent)

b) protocols for getting down to the absolute minimum dosage

c) what, if anything, can be done - in advance - to preempt the impact on adrenal function

d) what Tests to expect and ask for regularly, to asses any damage steroids are doing

e) what regular medications, vitamin supplements, diets, exercise regimes, life-style strategies etc, are the most important for mitigating some of the negative effects of steroid use (whether inhaled or Oral

From what I understand you are saying above my experience

a) I use Seretide 250 (2 puffs twice a day) Is it helping and the answer is Yes. My asthma is worse in the winter and being on a combination inhaler is essential to keeping me well.

b) Protocols See getasthmahelp.org/documents... This is the protocol that is used for asthma treatment. I believe it provides a comprehensive explanation of what treatment is need at what step. This document is easy to understand and what GP/asthma nurses/consultant use to step up or step down your treatment. The aim is to keep you on the lowest amount of medication to help prevent any long term side effects.

c) I am fully aware of the impact of the medication on my adrenal glands by taking a steroid inhaler. To answer the question you pose then you would have to ask an asthma expert. I sure that if you rang asthma UK helpline then they could help you or ask your asthma nurse/GP

D) Testing to monitor you on steroids. For my personally experience I never been tested to see how my body is reacting to my steroid inhaler. Prenisolone is a different situation and use when an asthma attack has occurred if part of your asthma plan. This medication for me does give me side effects. Mood swings, sleep disruption and sents my blood sugar very high. All these are short term as I only take it 7 days after an asthma attack. I would not take them just because they give me side effects. A degree of trust and co-operation with the medical profession is needed.

E) As for this question then I think this is an individual experience and as asthma treatment is tailor made for each individual. i.e what works for one won't necessary work for another person.

If you know the risk factors and side effect of the particular medication you are on then you can do what is necessary to keep yourself healthy. e.g. Some inhaler can give you oral thrush if so then you must rinse your mouth out with water and brush your teeth when you use it. I use mind with a spacer this reduces the chance of this happen but doesn't always. Oral thrush is easy treated with an anti fungal medicine easy obtain from your local pharmacy.

Just like most people a good diet, exercise and good support from family and friends will help anyone stay health in mind and body.

Asthma is a disease that if not control can be result in asthma attacks. Using medication such as steroid inhaler as prescript ed and regular asthma review at your local GP surgery and or if necessary if you need hospital treatment under a consultant is part of the package.Having a proactive response to your asthma care. All these things will help a personal with asthma live as normal life as possible and greatly reduce the likely hood of an asthma attack.

[healthwish]

Very informative and i see ur point. I was a person who.never took tablets. I refused steriods many times but when my breathing was so very bad i took the steriods and they helped me. I had to balance taking steriods or being so breathless i had a poor quality of life. Over the past 4 years i had to take several steriods due to.flare ups. I am very concerned about the side effects and my future health. I take calcium tablets to.protect my bones since steriods suck the calcium from the bones. I hav put on a lot of weight since steriods distribute fat to the abdomen tummy face and shoulders. I wish there was an alternative drug to helo asthmatics.

[Hidden in reply to healthwish]

I assume we're talking about oral steroids here rather than the inhaled version. As far as I'm aware inhaled steroids are not associated with weight gain. Certainly in the near thirty years I have been taking inhaled steroids they have not had that effect on me. Nor do they appear to have had any effect on my bones.

[Hidden in reply to healthwish]

In addition to the above I should perhaps point out that I have always done quite an amount of exercise. As a child, despite being asthmatic, I was able to do ballet and, later, gymnastics, both of which would have strengthened my developing bones considerably. As an adult I have continued with the ballet on and off for most of my life, which has probably helped.

Exercise is very important for healthy bones - even a low impact exercise such as walking will help. This is true of the general population, not just of asthmatics. It's worth noting the point I made above about my younger son. He was placed on inhaled steroids for asthma when he was three years old. Thirteen odd years later his bone density was screened as part of an ongoing research programme on childhood development involving around ten thousand children from the general population (so not just children who had asthma). Despite having been on inhaled steroids (flixotide in his case) for ten plus years, his bone density was far greater than that of most of the children of his age (asthmatic or not) they had screened: the reason, he had always been to schools that did a lot of sport. Those schools had kept an eye on him in PE lessons just in case there was a problem and appropriate action was taken if his condition did flare up. It probably helped that he was a very active and highly co-ordinated child, so he enjoyed it.

For me, I'm now going through the menopause, so at the beginning of the period when hormonal changes can have a profound impact on bone strength. I continue to take my inhalers and eat a good diet, knowing that if I don't I won't be able to do one of the main things that helps to maintain my overall strength (bones included): exercise, and more particularly, my weekly ballet class.

One thing I wondered about seeing your post. You say you resisted taking steroids, was that oral steroids or steroids in general (so inhaled steroids as well)?

[healthwish]

Yes steriods tablets but i also take seretide 500 so i am concerned about both types of steriods.

[Hidden in reply to healthwish]

Ah, so your medication is more powerful than mine (I'm on flixotide 250, same steroid as seretide, but without the LABA) which might make a difference. Although to be honest, I'm currently on 1000mcg of flixotide a day, which is usual for me at this time of year.

[Snowdrop27]

A short course of steroids after an asthma attack should not be blamed for weight gain infact it can make you lose weight. This happen to me last year after 3 weeks of being on it while my asthma medication was sorted out to get me on the right preventer and then onto a combination inhaler.

As for the high dose of Seretide you are taking 500 the list of side effects.

This is a direct quote from the leaflet of this medication.

Seretide may affect the normal production of steroid hormones in the body, particularly if you have taken high doses for long periods of time. The effects include:

Slowing of growth in children and adolescents

Thinning of the bones

Glaucoma

Weight gain

Rounded (moon shaped) face (Cushing’s Syndrome)

Your doctor will check you regularly for any of these side effects and make sure you are taking the lowest dose of Seretide to control your asthma.

It does state that your Doctor will monitor your health on taking this drug. I have only been on this dose for three weeks and the lower dose for about a month. Last year I was on seretide 250 for 3 months January - March/April and wasn't aware of any other side effects than thrush which is easy treated. I am now back on Seretide at 250 dose. I going to see my asthma nurse shortly for a review. I have gain weight in the last three weeks but I can't blame the medication as I not been able to go swimming 3 times a week (like I normally do) this couple with the 20 min walk there and back usually keeps me fit and keeps me weight down.

While I not able to do much exercise then I have to eat less. I have a very good diet normally but can be an emotional eater.

I think there is a balance view needed to be taken here. While none of us want to take a drug that gives us side effects we are sensible enough to realize that in order to stay healthy and well we must take these inhalers.

Asthma is not something that should be played fast and lose with so we have to put our sensible head on and do the best we can.

I will repeat what I said earlier none of us are medical professionals and I think is would be important that you go and talk to your Doctor/Asthma nurse about your concerns. They will not mind infact I know that they will be pleased that you take such a proactive stants on this.

[Hidden in reply to Snowdrop27]

I agree with you completely on that post, elanaoali.

Your list of side effects for seretide 500 is really interesting because unless I'm much mistaken, flixotide 250 (which is what I am on) has the same amount of fluticasone in it as seretide 250, the only difference being that seretide has the additional component of serevent.

In winter, I am on 1000mcg of flixotide a day, which is two doses (2 blisters in an accuhaler) morning and evening. So in the winter I could, presumably, be taking the same amount of inhaled steroid as someone who is on the lower dose of flixotide 500 or seretide 500 come to that (in an accuhaler that would be one blister morning and evening).

Yet if you look at the warnings on possible side effects listed for the 250 flixotide, they don't make anything like the grim reading you quote for seretide 500 (which presumably contains 500mcg fluticasone as well as serevent per metred dose, or blister). Those that are listed for flixotide 250 are under headings ranging from 'Very Common (may affect 1 in 10 people)' and the example given is 'thrush in mouth and throat', to 'Very rare, may affect 1 in 10,000 people' and among the examples given is 'Cushing's syndrome'.

I would suggest that the thing that possibly helps to alleviate my concerns over possible side effects is the listing of how common, or rare, these side effects may be. So why do they do that on 250 flixotide, but not on seretide 500, when it is quite possible for the person on the flixotide to end up taking almost as much inhaled steroid as an individual on the seretide?

[Matti21]

I do agree but the Dr's say the amount of steroid inhaled is minimal. I for one feel nothing is helping me combi inhalers, single steps and reliever all of them. Even Prednisolone doesn't help. My skin at 54 is practically see through, bruise like 80 year old from 50 years of them and topical steroids for eczema. I'm wanting theophylline or ephedrine which is illegal but sick of no control and no life. They don't listen, wouldn't do tests on adrenal glands unless long term which I had after 2 years on Prednisolone. I'm off but still need courses of it. I asked about dexamethasone as it apparently helps within 3/4 days rather than 8/10 but they refused. So on this occasion I agree with you.