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steroid inhaler and cataracts

Boharford profile image
64 Replies

Had an appointment with consultant who says I have cataracts. He reckons inhaled steroid use can cause this condition. Not heard of this side effect in all the years I have been using them . Is he right?

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64 Replies
Bevvy profile image
Bevvy

Having looked at your information I am guessing you are an older person? If so it is highly common for an older person to develop cataracts.I also have never heard of inhaled steroids causing an additional risk. One of the biggest risks of steroid TABLETS is steroid induced diabetes but cataracts …. No! And I worked for 30 years with visually impaired people so came across many people with cataracts and never been told that consultants thought it was due to asthma inhalers!!

gillbee profile image
gillbee in reply toBevvy

I have confirmed steroid induced cataracts. The consultant said they will monitor it every six months and when the time comes I will be operated on but at this point doesn’t need it. I have one in each eye. I am 50

ickihun profile image
ickihun in reply togillbee

Yep. Steroid induced diabetes, cataracts and weight gain. I'd imagine it would need a higher level of Steriod than that in inhalers than say steroid tablets. I never get hungry after my inhaler use. Do you? Unless research is now stating longterm use of inhaled low dose steroid causes cataracts? Research definately states longterm use of steroids can cause cataracts, diabetes and weight gain. So all conditions incumbent no matter the dosage?My understanding is... if I need steroid inhalers to prevent attacks then a cataract isn't as life threatening than say not being able to breathe. My GP's have reassured me that the low dose inhalers aren't a threat to weight gain or its minute. So therefore same for say a cataract.

I think he’s right in that it’s certainly possible.

Steroid inhalers totally suppressed my pituitary and adrenals, thinned my skin and I’m waiting to hear the results from my DEXA bone test.

I’ve read that they can cause cataracts.

It will presumably depend on your body and to what extent the inhalers act systematically. This depends on phenotype my consultant told me, also that some inhalers are more likely than others to do that. Most likely is Fluticasone.

Emaych61 profile image
Emaych61

I’ve been on steroid inhalers for over thirty years now and I’ve never heard that either. As I do have sight issues and have done so for around fifty years I think any increased risk of cataracts from steroid inhalers would have been mentioned. The fact that I’m asthmatic as well as the medication I’m on is listed on my notes at the opticians I attend. As it happens I wouldn’t be surprised if do I end up getting cataracts, but that’s more because both my parents developed them.

There is actually scientific evidence that inhaled corticosteroids CAN cause cataracts e.g.

newscientist.com/article/dn....

from the BMJ:

Inhaled steroids are associated with cataracts

thorax.bmj.com/content/58/1...

Emaych61 profile image
Emaych61 in reply to

What neither article seems to take in to account is other factors that may predispose individuals to developing cataracts. Admitted both the articles are short, but it would have been useful to see what else was taken in to consideration. An admission is made that the condition is very common in the over 65s . Both of my parents had to have treatment for cataracts, neither of whom were ever on inhaled steroids - or any type of steroid. Neither of them ever had asthma.

The articles also seem to make it clear that it is the higher doses of inhaled steroids that are most likely to increase the risk. That is an important factor to note I think. It is also good to see that both articles stress the importance of continuing with asthma medication.

in reply toEmaych61

They say it’s high doses of ICS that cause adrenal insufficiency yet my medium dose one totally suppressed my HPA axis.

My respiratory consultant said it was my phenotype. I bet that will also apply to cataract risk with ICS.

Edit: agree about not suddenly stopping medication. Talk to Dr about it and plan it with them.

Emaych61 profile image
Emaych61 in reply to

I’ve never been tested for adrenal insufficiency despite being on inhaled steroids for over thirty years. It’s never been suggested that my bone density should be checked either. Admitted the medication I’m on is not really high (Alvesco 160 once daily during the summer with a top up of Alvesco 80 once daily in the winter), but it’s not at the low end of the scale either. I’m due to have an MRI soon and having had one nearly six years ago any bone thinning may well show up on that, but the reason for the MRI is not related to asthma and inhaled steroids.

I will be very, very surprised if I don’t get cataracts with both parents having had them. When is a bigger issue. My mother got them when in her late sixties early seventies; my father in his eighties.

in reply toEmaych61

Alvesco is much, much safer than Fluticasone. You are on the best steroid inhaler for avoiding adrenal insufficiency.

Emaych61 profile image
Emaych61 in reply to

I was on Flixotide 250 for over twenty years, the dry powder form (a: it really suited me and b: it had a counting device). It also had the advantage of massive flexibility which I really, really liked: I could go from needing just 500mcg daily in the summer to 1000mcg daily in the winter, with 750mcg in spring and autumn.

strongmouse profile image
strongmouse in reply to

Do you mind me asking how long you were on the inhaled steroids before you found out that your HPS axis was totally suppressed?

Taking inhaled steroids is so important when asthma attacks, but it is good to know what sort of side effects we need to look out for. I've been taking them for quite a few years. A mild cataract was found at my last optician's appointment, but no treatment required yet. just monitoring. I'll be 70 this year and my mum had cataract. Plus blood pressure higher. Diagnosed with osteoporosis but again my mum, who wasn't on any steroid treatment, had this. It can be hard to know what needs to be monitored . checked for when!

in reply tostrongmouse

21 years on various doses, most of that time on a low or medium range dose. The last 7 years on the highest medium dose: Seretide 25/125 taking 4 puffs a day.

It gave me high blood pressure too, and thinned skin. Waiting for the DEXA results still.

Yes, I agree, it’s often very difficult to say exactly what the cause is / are. In my case the endocrinologist suspected a pituitary tumour due to the extreme suppression but now I’ve been tapering off Seretide for 4 months my cortisol has increased from 10 to 234 nmol/L. That just can’t be a coincidence and seems to prove it was the inhaler- something the respiratory consultant absolutely believes is the case.

Like you said, some of these things can also be familial issues or dietary environmental etc especially osteoporosis etc The consultant told me the inhaler affected me systemically due to my phenotype.

strongmouse profile image
strongmouse in reply to

Thanks for answering, koala. In the future it seems genetics might have a part to play in medicine, but for now it is hard to unpick!

Having said that I think we are so fortunate to have so much health care available. My main bug bear is when the knowledge is generally available, but patients are kept in the dark.

in reply tostrongmouse

Completely agree.

Thank goodness for the internet- forums like this, published journals etc

Emaych61 profile image
Emaych61 in reply to

Now this is really interesting, and I suspect really does show how phenotype and genotype can make a difference. You point out that you were on Seretide 25/125 for seven out of twenty one years of (I assume) steroid inhalers. I was on Flixotide 250 (so a higher dose of the steroid fluticasone) for over twenty years before I was switched on to Alvesco last year, and I was on other, not quite so strong, steroid inhalers for ten years or so before the Flixotide 250. I’m now sixty. As yet (as far as I’m aware) there is no sign of cataracts and my sight is checked every two years (and both my parents developed cataracts in their later years). Not sure about bone density, though given that I did ballet and gymnastics as a child, continued on with the ballet to quite a high level until I was nearly forty and then took it up again after a gap of fifteen years I think it’s probably safe to assume my bone density may have been better than average when I reached physical maturity. The chances are also reasonably high that it stayed that way for many years. I’m quite small, but so were both my parents, and I’m also (still) quite slim. My diet is good (has to be, having reflux means that I have to be careful about what I eat, how much I eat and when I eat it) - even dieticians and consultant gastroenterologists have acknowledged that. As you say, many factors need to be taken in to consideration.

in reply toEmaych61

Sorry my post sounded unclear - actually I was on Seretide for 21 years.

The last 7 or so on the 25/125 four puffs daily dose

Yes, our phenotype seems incredibly influential.

Boharford profile image
Boharford

Interesting perspectives- still would have taken the steroids if it was the case. Cataracts are an easier fix than Asthma complications

in reply toBoharford

It depends what side effects doesn't it, and whether there are good alternatives to ICS. Also, which ICS because they vary massively I've learned recently.

Doctors need to be more aware of the risks of ICS generally I think.

Emaych61 profile image
Emaych61 in reply to

Yes, ICS vary massively, but so do the individuals taking them. What may cause problems for one person is not necessarily going to cause problems for another. Getting and keeping asthma controlled is the number one consideration of any resp. consultant.

But really, it’s the same with any medication. I’ve yet to hear of one with no known side effects. Good alternatives to ICS? That’s something to discuss with a resp. consultant. Though bear in mind that the alternatives will probably come with side effects as well.

There will be some on this forum who remember what it was like when there were no inhalers (or there were but they just weren’t put on them). My first inhaler was called IntalCo (non steroid) and it controlled my asthma well for just shy of twenty years. It changed my life when I was put on it but I suffered five years without an inhaler before I got it. But when I moved to a different part of the country it was no longer so effective so I was switched to my first steroid inhaler (nothing like strong enough; it took an admission to hospital to get the doctors to put me on something stronger). IntalCo was withdrawn years ago.

in reply toEmaych61

I remember Intal! The little spinhaler with sort of capsules to put in each time.

Yes, that’s why I’m keen to learn about Xolair from people.

Emaych61 profile image
Emaych61 in reply to

That’s the one: white and yellow capsules (aka spin caps) - straight Intal: orange and white capsules - IntalCo. IntalCo contained isoprenaline as well as sodium chromoglycate. It could be used both as a preventer and a reliever. Only problem with it was if I used it as a reliever I got a splitting headache; the worse the asthma attack, the worse the headache.

in reply toEmaych61

I was a child but I remember the orange colour. It had a particular smell too.

Pretty hilarious it almost sounds like reminiscing about asthma inhalers from the past 😂

lakelover profile image
lakelover

I had a bone density test because when I broke my elbow the orthopaedic surgeon found brittle bone. At the test the nurse asked if I was on steroids & I said I was on inhaled steroids but had only had pills when I was diagnosed with asthma. She said that was OK. What was more important was my early menopause & my mother having had osteoporosis.

in reply tolakelover

I wouldn’t trust the nurse’s knowledge of systemic effects of ICS. Even plenty of doctors are unaware that inhalers can eg suppress the adrenals etc

Of course family history and early menopause are risk factors - I just mean ICS can be too.

I’m waiting for my DEXA results. My skin has already been diagnosed as affected by steroids (inhaled)

Gareth57 profile image
Gareth57 in reply to

From my experience I think most doctors and nurses are well aware of the side effects of both inhaled and tablet steroid use, but they have to balance the amounts prescribed against the control of your asthma, if they said to you we will cut your steroid inhaler use but it will have an impact on your quality of life would you be happier?

in reply toGareth57

Not in my experience: my NHS hospital endocrinologist didn't believe an asthma inhaler could affect the adrenals.

That was in January. He now knows they can! My inhaler totally suppressed my ACTH and cortisol.

in reply toGareth57

ICS aren't the only treatment, just the most common by far, affordable and for most people, safe.

Oral steroids can certainly cause or exacerbate them. With high dose inhaled steroids over many years the same would apply. They also raise intraocular pressure.

Thomas45 profile image
Thomas45

I've been on inhaled steroids for 30+ years, and was on tablet steroids for 4 years as I had Polymyalgia Rheumatica. I have had cataracts on both eyes as have many friends who don't have steroids.

garywake profile image
garywake

Funny enough, I have just had an eye test and my Optician confirmed early onset cataracts. I am recovering from pneumonia and he asked ne if I had been taking steroids for this as he says they can bring cataracts on. I mentioned I take inhaled steroids but he didn't think they were strong enough to start cataracts. I am 56.

in reply togarywake

See what I mean - lots of ignorance around amongst medical professionals regarding the extent to which ICS can act systemically in some people.

Celie1 profile image
Celie1

Hi,I’ve had cataracts in both eyes and surgery in my early /mid 50’s about 10 years ago.

I think the consultant called these ‘subcapsular’ , not the type you get from aging and put it down to steroid inhalers.

My sight is fine now.

in reply toCelie1

EXACTLY. Proof. Thank goodness your sight is fine now.

Celie1 profile image
Celie1 in reply to

Yes. Thank you. At least there is an operation to sort the cataracts as we can’t just not take the inhalers 🤷🏻‍♀️.

(BTW I always rinsed but that didn’t make any difference!)Hope your adrenal problem gets sorted 🤞

in reply toCelie1

Thanks!

It seems to be going in the right direction. Tapering off has been easy so far despite quite some reduction: only taking 1/3rd of the dose now and no adrenal symptoms. I think this is my limit now regarding the asthma. I started Montelukast which is very effective otherwise I couldn’t have dropped to 1/2 let alone 1/3

Celie1 profile image
Celie1 in reply to

That’s good news.

I know how I felt last year when I just couldn’t get off prednisolone without ‘breathlessness’ symptoms coming back, as if I would be on them forever! It took me about 6 months from first to last.

I’m pleased that you’ve managed to get this far with your more serious problem.

in reply toCelie1

Well done managing it though, it takes time doesn’t it. Great you did it.

I started reducing 3.5 months ago and would love to come off Seretide completely. Maybe use a safer ICS instead like Alvesco, or maybe Xolair- not sure what’s going to happen yet.

I’m currently on 1 puff 25/125 and 1 puff 25/50.

Celie1 profile image
Celie1 in reply to

Thank you. I’m only off the steroid tablets, (which is a big deal for me) I’m not sure I could do without the inhalers like you’re doing.

You’re doing great! 👍

in reply toCelie1

Thanks!!! Montelukast is helping I couldn’t do it without that, and of course Ventolin.

My nasal turbinates are driving me nuts though. Can’t breath through my nose and it feels like someone is constantly pressing on a tender bruise.

Celie1 profile image
Celie1 in reply to

Sounds really uncomfortable! Is this a new thing, not being able to breathe through your nose?

Trying to be sure to breathe through my nose is the thing that helped to get my asthma under control. It was hard to start with but I followed Patrick McKeown and the Buteyko breathing method which was really good. Although with the nasal turbine thing going on I’m not sure what would help. 😬

in reply toCelie1

Yes it’s very uncomfortable.

I’ve had it my whole life except for the last few years while Seretide was flooding my body with Fluticasone. That blocked my hayfever too, which is back this year.

I had steroid nasal sprays in the past but can’t do that now because I’m coming off my steroid inhaler due to adrenal suppression. I need to maybe email my respiratory consultant because she did say about Xolair.

I’m using Sterimar but it’s not enough

That’s interesting! Others have also said how Buteyko helped them, but nasal breathing for me will only work once the swollen turbinates have been dealt with.

Celie1 profile image
Celie1 in reply to

I’ve tried the Sterimar because it’s quite handy for travelling, but I can’t get it to go far enough up my nostrils, it just seems to go up and down out of the same nostril. 🤷🏻‍♀️I use the Neilmed now because I can very easily get the solution to go up one nostril and down the other, although I’ve heard it doesn’t work for everyone.

Hopefully, when your swollen turbinates have been sorted maybe the Buteyko would be helpfulfor you. I found the ‘unblocking the nose’ technique worked really well for me and the breathing exercises made a huge difference for generally managing my asthma. It’s a bit of a different matter if I have a flare up, I still need to go on the prednisolone unfortunately.

in reply toCelie1

Thanks, that's so helpful.

Celie1 profile image
Celie1 in reply to

All the best 😊

ccccc profile image
ccccc

It's an interesting issue as I get blurred vision sometimes in one eye and was worried I had a cataract developing as my work colleague had cataracts aged 60 and she takes a fair amount of steroids for her asthma. But the optician assures me it's just a big floater, but it does seem to have come on only since I started taking 5mg a day Pred last year for my asthma.

I had a DEXA scan last year (I'm 40, been on oral steroids on and off for asthma for years as well as high-dose steroid inhalers) and was diagnosed with Osteopenia, which is a mild form of Osteoporosis. It's quite common, even people who don't take steroids have it, and there's other factors that can determine whether it progresses to Osteoporosis. The GP put me on Alendronic Acid because he thinks the steroids may increase the risk. But then saw an endo who doesn't think I need it as long as I'm taking Vitamin D! But also had my cortisol tested last year and it was found to be very low due to the steroids, something I'd never thought about. I don't think there's much awareness among respiratory consultants about bone /eyesight/adrenal issues, I've made Asthma UK aware who are working on some new information about this as we need this information to be out there.

Emaych61 profile image
Emaych61 in reply toccccc

I think awareness of specialist doctors concerning a lot of the side effects of some of the meds they prescribe can be lacking, but that I think is very much down to a) their main concern is to deal with the problem they are responsible for and b) lack of awareness of how one medication for their area of expertise can impact on another, different area of expertise. In the case of asthma the main concern of a resp consultant is to get a potentially fatal medical condition under control.

I had recent experience of this in a different area. An ENT specialist I saw was, quite frankly, horrified that I was only taking 10ml of Gaviscon advance (used to treat reflux) a day. What he failed to take in was that the stuff, whilst great for reflux, can also cause constipation which I am particularly susceptible to. His primary concern was to control any damage resulting from reflux in the areas of his expertise: the fact that my bowel (not his area) would be affected if I took higher levels of it seemed to pass him by. As a result of my consultation with him I was put on Dymista (to be taken daily), NeilMed sinus rinse (to be used daily), and was also told to get my GP to prescribe me an antihistamine (also to be taken daily). Of those three only one can I take daily- the antihistamine. I get nose bleeds from the Dymista if I use it too frequently (so I now only use it on an as and when needed basis), and the NeilMed sinus rinse actually increases levels of irritation if I use that too often (so now that’s also used only when required). As he discharged me he is presumably unaware of this, but if he does have cause to see me again I might well end up having to defend my actions.

What is really worrying though is the reverse situation: when doctors, thinking that a steroid inhaler is causing a particular side effect, make it quite clear that they would prefer it if you stopped using it (and yes, I have experienced that as well)! In the case of asthma that is, quite frankly dangerous. I’ve had years of experience of doctors and I know my asthma well (having had it for nearly sixty years) so I was quite prepared to stand my ground on that one. But it takes experience, knowledge and (above all) confidence to do that, and not everyone has that.

in reply toEmaych61

"What is really worrying though is the reverse situation: when doctors, thinking that a steroid inhaler is causing a particular side effect, make it quite clear that they would prefer it if you stopped using it (and yes, I have experienced that as well)! In the case of asthma that is, quite frankly dangerous. "

The Endocrinologist or Eye specialists or whoever is dealing with the side effects needs to work together with the respiratory team to find a solution. I've finally got an endo and respiratory team helping me with the adrenal suppression and asthma. You can't do it with only one of those teams.

Emaych61 profile image
Emaych61 in reply to

They should, I agree. What actually happened was I ended up asking my GP to refer me to resp cons to have my asthma checked (at the request of the cons who was dubious about my asthma meds and was blaming them for the problem). I explained the situation to the resp cons plus went over my asthma history, whereupon he wrote to the other cons saying there was no way I could come off steroid inhalers. Nor indeed was there actually any definite proof that it was the inhaler that was causing the problem. I later discovered that another medication I was put on at the time, when taken in conjunction with this particular steroid inhaler, could, very occasionally, cause this particular problem.

Celie1 profile image
Celie1 in reply toccccc

Just for information, my cataracts started in the same way as yours with a blurred patch of vision. I also had problems driving in the dark as the lights were too dazzling.

What was very interesting was that it took three separate specialist eye examinations, where I was told nothing could be seen, before the main Consultant examined my eyes and straight away said I had cataracts!

On questioning him it seems that the other registrars? didn’t see the obvious because they didn’t expect cataracts in someone as young as I was. They were expecting to see some other sort of eye problem. Incidentally, the optician didn’t spot them either. I don’t know whether this was because they grow in a slightly different place to age related. I think they’re called ‘posterior subscapular ‘ cataracts.

You may need to keep going back as I did, if they are really bothersome.

Good luck

runcyclexcski profile image
runcyclexcski

I've been told to rinse my mouth after using inhaled steroids (since about 2008) -- for this exact reason (cataracts)

AppleOrchard profile image
AppleOrchard in reply toruncyclexcski

Please can you say a bit more about this? Reading these replies I too am a bit worried!I always brush my teeth after taking my inhaler.

Thank you!

runcyclexcski profile image
runcyclexcski in reply toAppleOrchard

Honestly, this is all I know :) And I have been pretty sloppy myself with rinsing my mouth. Cataracts can be surgically removed and develop slowly. I.e. one won't one day suddenly wake up with no eyesight at all (like after a bad moonshine drinking party :) ). It sounds like you should be fine if you brush your teeth!

Here is an old 1998 paper cited 300+ times. I can get you the PDF if it's not available (I am on a university IP, email me privately if you need it). Based on the abstract, the risk among the elderly is 3x higher with the inhaled steroid use. I guess I am soon going to be classified as "elderly" myself, so I should be less sloppy about rinsing my mouth.

jamanetwork.com/journals/ja...

AppleOrchard profile image
AppleOrchard in reply toruncyclexcski

Thank you very much. That’s really helpful. Cataracts already run in my family. I have only been on a steroid inhaler for a year now but it’s a high dose. And I have been on around five courses of steroids since November. I’ll read the article now. I just had a quick look and it was fine.

Thank you again.

Emaych61 profile image
Emaych61 in reply toAppleOrchard

I used to brush my teeth after taking my inhaler (which is what was suggested in the accompanying information paper) only to be told a few years later when I was diagnosed with oesophageal thrush that that was not enough (by a gastro consultant)! I changed my routine to rinsing and gargling, brushing my teeth and then rinsing and gargling again. That, I was later told by a respiratory consultant, was about enough. These days I also brush the tongue at the back of my mouth as well.

in reply toruncyclexcski

I was always very conscientious about that, but it didn't help. The inhaler destroyed my HPA axis.

Emaych61 profile image
Emaych61 in reply to

As I mentioned above, I’ve been told that just cleaning teeth after using a steroid inhaler is not enough (despite what it might say on the information leaflet to the contrary).

Snickers72 profile image
Snickers72

Causing cataracts, is usually not part of patient education when prescribing steroid inhalers, unfortunately - Probably, because it is seen as…….’Does the patient really have any other choice…….? It really should be communicated. Rinsing the mouth after using steroid inhalers, is mostly to prevent fungal infections in the mouth and throat…..and may also help to reduce the amount of medication floating around in the body……which may reduce the incidence of cataracts. More reading and study needs to take place on this……..

Emaych61 profile image
Emaych61 in reply toSnickers72

It is, but how many asthmatics were told to rinse their mouths out after using their steroid inhalers when they were first given them? I certainly wasn’t, neither were other asthmatics I know. If you read the information pamphlet enclosed with the medication you’ll find it there, but I know an awful lot of people who don’t do that. Many seem surprised that I do.

runcyclexcski profile image
runcyclexcski in reply toEmaych61

I suppose the assumption is that having uncontrolled asthma is way worse than a (slowly) deteriorating eyesight which can be surgically taken care of and which tends to happe with age "anyway", steroids or not. But I fully agree that the patient needs to know the side effects and how to reduce the chance of getting them.

in reply toSnickers72

Totally agree.

Snickers72 profile image
Snickers72

Doctors do forget to inform patients of the need to rinse their mouths thoroughly after inhaling steroids. Best practice should be to provide an as needed rx for Clotrimazole lozenges and/or Nystatin liquid to gargle with, should a fungal infection occur in the throat/mouth……..I totally agree - patient education is suffering these days……Always ask this question of your practitioner……”IS THERE ANYTHING I NEED TO KNOW ABOUT THIS MEDICATION YOU ARE PRESCRIBING?……..SUCH AS SIDE EFFECTS?…….MOST COMMON, AND MOST SERIOUS?”……..ASK THIS EACH AND EVERY TIME…….AND WRITE DOWN WHAT THEY SAY! Also, look up your medication on the internet when you get home - and really get familiar with your medication. Practitioners are human - do get extremely busy……and sometimes get hurried, and need the patient to prod them for information. Be courteous and do not let yourself be hurried through discussions with your practitioner.

hells456 profile image
hells456

I'm 44 and was told I have the start of cataracts because of inhaled steroids last year.

Anniecath profile image
Anniecath

I was diagnosed with cataracts a few years ago and the consultant said that due to the central loss of sight it was down to inhaled steroid use. He also said that age related cataracts the sight loss was usually peripheral. I was about mid sixties when diagnosed and have had surgery to correct the issue, all fine now. I am guessing that people like me who have been asthmatic most of their lives are at greater risk than people with later onset asthma ?!!

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