Seretide and adrenal insufficiency/exhaustion

[digdig123]

Has anyone experienced adrenal problems due to the steroids or inhalers they’ve used for their asthma. I’ve just had my cortisol tested and it’s flat lined. I’ve been reading online that too many steroids and high dose inhalers of particular brands can be the culprit. What’s your experience please.

[Kiiam]

Hi digdig , yup, I think more and more people are becoming aware of the problem. My adrenal gland has been suppressed by the use of steroids, and for two years I would be put on 40mg for weeks, sudden stopping of gem found me back in hospital so I had to insist on a reducing dose then , but after 2-3 weeks later I’d be back on40mg ........ and guess what this was because my adrenal gland was suppressed and the lack of cortisol left me unable to fight off the asthma attacks ........ eventually blood tests indicated cortisol down to 50 , the exhaustion is awful along with other symptoms. I’ve been on a stat dose of steroids of 8mg for 6months now, and I’m much more stable, and my adrenal gland seems to be coming to life again , the last count was 130 , however an asthma exacerbation 4 weeks ago meant an increased dose of steroid again, but now back down to 8mg .... blood test next week so I have my fingers crossed that my adrenal gland is still trying to come to life . There is a lot of research going on regarding adrenal insufficiency and asthma ....... lots I have read makes lots of sense to me

[Hidden]

Hi digdig. No I haven’t had any problems from the steroid inhaler I’ve been on (Flixotide 250 - so fluticasone propionate, same steroid I believe as the one used in Seretide). I’ve been on that for that for nearly twenty years and before that was on Flixotide 125. Prior to that I was on Becotide (beclometasone, which never fully controlled my asthma). Total number of years on steroid inhalers is over 30 years, though I admit around ten of those years were on less powerful steroid inhalers. On the other hand I very rarely need to go on oral steroids. At most twice in almost thirty years.

[Lysistrata Administrator Community Ambassador]

I have adrenal insufficiency caused by oral steroids. Initially 15 months up and down with the dose after I couldn't come off them without getting worse so it would be put back up. Then a period with a lot of short courses, then another year with continuous ones.

After that I managed to taper down to zero, because my specialist centre worked out that actually oral steroids do not do a massive amount for my asthma - it still confuses me tbh! But then had a couple of short courses with admissions (A&E/acute medics do not do the finer points of steroid resistant asthma though they are starting to follow my team's lead if I go to that hospital). Had a short course in May last year which I tapered off as I knew by that time I need to even for short courses. Another one in July last year which of course I was told I didn't need to taper off as it was only 7 days - but they weren't taking my history into account and I should have listened to myself. Got low cortisol symptoms after that, had to stay on 5mg pred to cover it until synacthen test in October (they try to stimulate your adrenal glands). My baseline cortisol is not terrible but I do not respond to the stimulation so considered to have adrenal insufficiency. Had another test in Nov this year and numbers were if anything worse, plus had an asthma attack and admission shortly after which I suspect is related to stopping my Fostair Nexthaler for the test.

I take oral hydrocortisone and have reduced the dose a little from where I started, but have to double if I am ill - they say no need for a cold but I have to as cold sets off asthma and asthma plays havoc with cortisol! I see an endocrinology nurse specialist who is very good and tells me to listen to my body. Unfortunately there is an awful lot of confusion because I don't take steroids for asthma when other people would, but I am on the permanent small dose of hydrocortisone to replace my natural cortisol and will increase that during attacks - but it works out at about 5mg pred which would do very little for asthma!

The medical team while admitted and even my asthma team often don't quite understand how the cortisol replacement works and can withhold doses for hours while they debate it which isn't really doable - I need to take it on time. I am ok while they give IV hydro, but the oral doses can be an issue and I often just take my own tablets in and keep hold of them.

It is manageable but I am an especially confusing case - given my asthma is a beast at the moment a lot of people in my position would be on maintenance pred, so I confuse them a lot by not being but still having attacks etc and not getting pred even for short courses.

For anyone on maintenance steroids but not officially told you have adrenal insufficiency - in case no one has told you this you are steroid dependent and should have a medic alert bracelet saying this, like I do for AI. Also be wary of funny business with steroids eg when I was still on 40mg, a consultant when I was admitted wanted to withhold my pred for a day because 'you had it at 2pm today [took extra before going to A&E] so you can skip tomorrow'. Never mind asthma (he wasn't an asthma cons), that would NOT have worked for my adrenals as I was dependent at that point. I took my own - not something I nornally do but a short term extra dose is not harmful (it's the long term that is an issue with steroids) and I really didn't need adrenal issues on top of the asthma. I don't really know what he was thinking tbh as if I responded well to steroids for asthma the missed day probably wouldn't have helped that much either!

Apologies for the ramble - hope this is useful. btw as far as I know if you have low baseline cortisol, you don't need a synacthen test to confirm and it can be hard to do as I have found with giving up meds, so don't be pushed into it.

[digdig123 in reply to Lysistrata]

It’s totally amazing to me how the hospital/doctors/nurses are so unaware of what prednisone does to our adrenals. Your in a situation where you can’t win either way!!

[Hidden]

May I just warn anyone on steroids (especially high doses or for a long period) to try and have your Vit D3 checked, as you could develop bone thinning (osteoporosis)

[digdig123 in reply to Hidden]

I have just been told that I am infact low in vitamin D. Do the steroids leech it out of your system?

[Hidden in reply to digdig123]

People who use oral steroid medications may be at greater-than-average risk of a serious vitamin D deficiency, a new study suggests.

The findings, reported in the Journal of Clinical Endocrinology & Metabolism, do not prove that the drugs themselves are the cause. the conditions the drugs treat contribute to low vitamin D levels.

Some of those disorders can lead to poor nutrient absorption, for example, or limit people's physical activity -- which may mean more time indoors, away from the sunlight that triggers the body's natural ability to make vitamin D.there is evidence that steroid medications may lead to vitamin D deficiency, possibly by boosting an enzyme that curbs the vitamin's activity in the body.

The bottom line, according to research, is that patients and doctors should be aware of the higher risk of vitamin D deficiency linked to oral steroids.

I personally use steroids for Asthma, Bronchiectasis, RA and Vascilitis. Also took them whilst having cancer treatment. I now have severe Osteoporosis.

[HungryHufflepuff]

I don’t know why it’s taken so long for doctors to realise the connection between steroids and all these side effects. People are becoming more aware but it’s a very recent thing it seems.

[Lysistrata Administrator Community Ambassador in reply to HungryHufflepuff]

I think they've been aware for a while now - if anything some drs I find can be over zealous about the side effect angle, and too cautious to prescribe pred when it is needed! With adrenal insufficiency they seem to forget that steroids are actually needed for survival - I have been lucky but I have seen tales of people being denied them because drs are worried about side effects and don't understand that you have to replace what the body doesn't produce.

I also used to get a certain amount of resistance when pred still seemed to work for my asthma and I was ticking all the boxes for needing it- drs would say ooh side effects and forget that if they didn't sort the asthma I might not need to worry about long term effects! Of course steroids do have risks and significant side effects and I wish I'd known earlier they didn't work so well, but there seems to be rather an all or nothing approach with some medics and they forget they have both risks and benefits that have to be balanced.

[digdig123 in reply to HungryHufflepuff]

It’s like we have to hold their hands. In the end we the sufferers end up being in the know more than health professionals. This happens because we go through so much to get to some sort of normal and reach out to forums like this pick up pieces of info. Sometimes I feel so let down by the medical profession. Ten different doctors will give you ten different opinions....

[digdig123]

I myself have had a terrible year with a virus which then lead to asthma. I’ve tried almost every inhaler on the market and taken too many steroids. Big doses of 40 & 50mg for a wk and stopped. No tapering. The first couple of times my body didn’t react. The last few, each following the same protocol my dr prescribed left my body ravaged. My central nervous system is completely shot to pieces. I took myself off to an intergrative dr who looks at the whole body. The results from blood and saliva work was seriously scary. No iron stores and flat lined cortisol. I don’t sleep. I am fatigued all day and I am dizzy. The dr has me booked into an endocrinologist but can’t get into him until the 1st April.It’s Christmas and all the drs here have knocked off for holidays. No one is around until end of January. I will just have to touch it out. I’ve been told that the endocrinologist will probably put me on steroids. That’s what go me into this mess!!!! Oh my god is there any other way? My breathing is actually the least of my problems!!!!

[Lysistrata Administrator Community Ambassador in reply to digdig123]

The steroids they give you to correct this are a much lower dose and usually of a steroid (hydrocortisone) which more closely mimics your body's natural cortisol. The dose is also much lower - the idea of pred is to suppress inflammation, whereas steroids to treat adrenal insufficiency are just designed to replace what you don't produce naturally. I don't generally get the side effects on hydro that I had with pred, because I am replacing cortisol I don't have rather than adding extra. You should also not be afraid to increase steroids when needed eg illness, as your body naturally needs more cortisol at those times.

I hope the endocrinologist is helpful when you see them. There's a very helpful Facebook group, if you are on there, called Adrenal Diseases Support Group- lots of validated info and support (moderators hope that is ok to point someone to this!)

[digdig123 in reply to Lysistrata]

ThankYOU. I didn’t realise that there were different types of steroids. Do /Did you suffer badly from low cortisol? I can’t sleep at night, but want to sleep on and off all day. I fatigue easily and my head is spinning.

[Lysistrata Administrator Community Ambassador in reply to digdig123]

I did - it made me very slow and stupid feeling and very tired. If I start to feel like that again I increase the dose. Asthma can really eat cortisol so I often need to increase with flares. Hope you find a solution!

[pinkypop in reply to Lysistrata]

i may undergo bilateral adrenectomy for endocrine dusorders along with oopherectomy - i;m worried about steroids post bilateral adrenelctomy -can hydrocortisone on a regular basis cause eye pain ? i had severe eye pan on short course of lyrica -pls reply

[Lysistrata Administrator Community Ambassador in reply to pinkypop]

Hi, I have never had any issues with eye pain but don't know if it is a possible side effect. Maybe you could look up the patient information leaflet? It's not something Inhave heard of but I'm no expert!

[digdig123]

Thankyou so very very much! I can’t stand fb but will have a hunt around for a support group similar. It’s Christmas Eve here. Lovely temp of 24degrees with gorgeous skies and gentle breeze. Merry Christmas to you and all your loved ones. This group has been an amazing support to me. There’s nothing like it here in Australia 🇦🇺

Merry Christmas everyone xxx

[Lysistrata Administrator Community Ambassador in reply to digdig123]

Merry Christmas! It's currently not raining here...but not quite as warm lol.

[robert1957]

if you can eat little and often it'll give your adrenalin glands a break fruit and vegetables are the best research grazing as in little and often also research magnesium deficiency and symptoms of magnesium deficiency good luck

[digdig123 in reply to robert1957]

Awesome Thankyou!

I was put on DHEA and some other herbs and minerals but you think my body is reacting to the DHEA 10mg. I am more fuzzy than normal and my I think it’s reacting to my antidepressant?!? I am going to ditch all the new herbs and DHEA to see what is spinning my system out by reintroducing. So why do you say eat often? I’ve read to increase my protein and have carbs in the afternoon and evening not first thing of a morning.....

[robert1957 in reply to digdig123]

research fruits and vegetables if you have a juicer use it to get your 5 a day and more if you can also research celery juice and drink it first thing in the morning it will increase your hydrochloric acid in your stomach thus giving you better digestion of your food ps

some people find it hard to drink I like it goodluck

[digdig123]

And also fruit after lunch and not of morning????

[robert1957 in reply to digdig123]

why after lunch?

[digdig123 in reply to robert1957]

I think it’s all about the natural sugars and carbs ??