Long-term Steroid Use: Hey everyone... - Asthma UK communi...

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Long-term Steroid Use

floating_ profile image

Hey everyone, hope you're all well.

I'm in hospital still and I just spoke to my consultant and they're going to keep me on steroids (10mg) in conjunction with my other medications (Relvar 184/22, Spriva Respimat, Montelukast, Carbocisteine, Dymista, Fexofenadine + some other antihistamines, and a bunch of other medications, used to be on Uniphyllin, but was taken off of it). Is there anything I should be asking about with regards to being on oral steroids long term?

As a side note: Finally got a start date for Omalizumab with my allergist at the end of September, so hoping it helps my asthma out too!

17 Replies
EmmaF91 profile image
EmmaF91Community Ambassador

Hi Floating

Ripped this straight from my steroids infomercial post 😅. Hope this helps

SHORT TERM SIDE EFFECTS OF PREDNISOLONE (and other steroids)

Not everyone gets all of these. And equally you may not get them every time you take pred! I’ll just list them for ease, but it can be reassuring to know that they are side effects if you were unaware but got them 😉. Some of these may only appear on longer term steroids (ie more than 5 days), but don’t forget that you have been given prednisolone for a reason - breathing is quite important or so I’ve heard anyway 😉😂. Some of these are also a lot rarer than others! No doubt I have missed some of them but here you go;

Acne, mood swings/behaviour changes, depression, anxiety, elevated blood sugars, headaches, nausea, tremors, insomnia, brain fog, restlessness/akathisia, becoming more accident prone (ie waking into door frames 😉😅), easy bruising, increased appetite (or rarely reduced appetite), menstrual period changes, increased sweating/hair growth, infections, heartburn/indigestion, dizziness, slow healing/easy bruising, muscle cramps, low potassium, stomach aches/ulcers/GI bleeds, fluid retention.

Oh and a FOUL DISGUSTING taste 😂. But seriously, anyone on maintenance steroids I highly recommend asking for enteric-coated/gastro-resistant ‘red’ pred. There is some suggestion that it can be absorbed less effectively/efficiently, however if you’re one to get a lot of GI side effects, these ones have the benefit of tasting A LOT better 😅😂.

Speak to your GP or seek urgent medical care if you get:

Acute pancreatitis - nausea/vomiting, diarrhoea, indigestion/heartburn, jaundice, abdominal tenderness, tachycardia, fever. Go to A&E if you suspect this!

Cushings - too much cortisol. Moon face, buffalo hump, torso weight with thin extremities. Purple stretch marks, easy bruising, abnormal hair growth, fertility/libido issues, extremity weakness, mood swings and depression. This should resolve once you stop the steroids, however if you’re concerned speak or if it doesn’t to your GP and they can check your levels.

LONG TERM SIDE EFFECTS OF PREDNISOLONE (and other steroids)

Again not everyone will get these, and some of them people say they can ‘recover’ from once they’ve stopped the pred, but here are the side effects that may linger even after you’ve stopped pred.

Steroid induced diabetes - one of the hardest types to control and it can present as a mix of type 1 and type 2. Those on long term pred should keep an eye out for increased thirst/urination and get sugars tested if you are concerned.

Adrenal insufficiency - covered extensively above and in lysistratas post; healthunlocked.com/asthmauk...

Osteopenia/Osteoporosis - bone thinning. Again those on maintenance should keep an eye on this, maybe request a DEXA scan if you haven’t had already, as if nothing else it gives you a comparison point. This is why we often get adcal-D3/calcium/alendronic acid tablets, to help slow/prevent this from happening.

Glaucoma - increased eye pressures. Blurry vision, halos, headaches and eye pain/tenderness. If you’re concerned see your local optician and they can test for it.

Cataract- cloudy lens. Cloudy/blurry/dim vision, halos, glare, light sensitivity, poor night vision. Again any concern see an optician.

STEROID CARDS

To combat the risk of accidental steroid withdrawal, or adrenal crisis, those on moderate to high dose steroid inhalers (see what yours is classed as here; shropshireccg.nhs.uk/media/... ) or those on steroid weans/on/off steroids a lot/maintenance steroids are normally advised to carry a steroid card. Traditionally these have been a blue card that you could just get from your local pharmacy, but NHS England (and maybe everywhere in the UK 😅) are now moving to sending red steroid cards in the post. This is because a lot of people who should carry them are unaware that they even exist 😅. They are only really used if you turn up to hospital unconscious and thus unable to tell them what drugs you take. ( healthunlocked.com/asthmauk... )

Thank you, Emma, for the info the cards! I did not know that.

I am on 10 mg, and I have friends have been pred for decades. They live, work and exercise, and have productive lives.

floating_ profile image
floating_ in reply to EmmaF91

Thank you so much! Excellent information though I'm gonna make a note of everything,

I did actually have severe diarrhoea/vomiting a few weeks back but when I presented the Steroid Emergency Card with my symptoms etc. the staff didn't do anything. Then I had a severe asthma attack, and sent me to resus and everyone freaked out afterwards lol. Confusing. What should've happened with that?

twinkly29 profile image
twinkly29 in reply to floating_

I imagine they gave you steroids for the asthma anyway so in effect they sorted any potential steroid withdrawal issues at that point - whether they intended to or not!

floating_ profile image
floating_ in reply to twinkly29

They did yeah, hydrocortisone IV! So makes sense, they also gave me oral pred. iirc, but it all kinda merges together with all the attacks recently. :s

twinkly29 profile image
twinkly29 in reply to floating_

I imagine they did as normally they'd increase steroids or start them for an asthma flare. But it sounds like whatever combo sorted any "steroid need" the body had without them necessarily sorting that need deliberately!

Dizzart profile image
Dizzart in reply to EmmaF91

Hi Emma can I ask about the risk to bone density on just a steroid inhaler twice a day. I’m 70 and bones a bit dodgy but no diagnosis from doc so just like to know if I take for say another 10 years will it wreck my bones . Ta much .👌👌

Ask about bone protection!!!! You definitely need to be taking vit d + calcium supplements and if they think you’re likely to be on them for more than 3 months at 10mg then they should also consider putting you on a bisphosphonate now to help prevent osteoporosis. Definitely make sure to ask about it because in younger patients they don’t always remember and can sometimes take some persuading that it is needed - I kept asking and got fobbed off repeatedly and now have osteoporosis as a result so really don’t want it to happen to anyone else.

If you’re not already on anything like omeprazole just be aware they can make reflux worse.

Also while steroids properly knocking out immune system function is rare they can slightly predispose you to infections if you’re on them long term - which I think is important if you were to come into contact with someone with shingles or chicken pox (think it says on the old blue steroid cards to contact your GP if you’re exposed while on long term pred).

And just being aware that when they hopefully start to reduce them in the future they need to slowly wean and keep an eye on adrenal function. And as you’re steroid dependent if you’re vomiting and unable to keep tablets down to seek medical advice.

A lot of this should be managed/monitored properly by your team but I just know from experience and other’s experiences that it doesn’t always happen 😂 so at least if you’re aware of potential issues you can chase them up!

floating_ profile image
floating_ in reply to Js706

Definitely will do re: calcium/vit D, my AN will hopefully come see me tomorrow, and I can speak with her? Would she know? Or is it better to mention to GP?

I'm on Famotidine and Sodium Cromoglicate, but not a PPI, my resp. consultant said about it a few months ago, but idk if I need another stomach acid reducer and he said to ask my GI? Lol. Will ask my GI/keep it in mind, though thank you!

They have already mentioned endocrinology because of concerns surrounding Addison's (due to my symptoms pre-oral steroids (skin colour changing etc.) but because I'm on steroids they can't currently test me for it? (saw an endo briefly during another stay). So not really sure what's going on with adrenal stuff really. It's all very complicated!

Js706 profile image
Js706 in reply to floating_

The AN should have an idea - and if not she should be able to bring it up with the resp team. If you don’t get anywhere with resp though speaking to your GP isn’t a bad idea (although you might end up a bit like I did where they don’t want to tread on people’s toes if you’re under very specialist care and so won’t prescribe without a plan from the specialists 🙄). Also as resp are the ones putting you on steroids they should be managing any issues with them!

Hopefully that should be fine! I didn’t have any issues for a while when I started long term pred, and I just noticed I was getting a bit more reflux after a couple of months and went on a PPI at that point - so probably just worth waiting to see.

Ahh that’s good that they’re already aware of endo (even if potential Addison’s isn’t great). Yeah I think they normally say about 5-7.5mg pred is the “physiological equivalent” dose, so once you’re at about that level they can normally check cortisol levels but anything above that there isn’t much point checking because your adrenals will almost certainly be suppressed by the pred dose

floating_ profile image
floating_ in reply to Js706

I could bring it up with the consultant tomorrow perhaps?? They're the ones who put me on it. 😂

Will remember that for future just in case!

Yeah, I've just not been able to stay off the pred long enough for them to do the test really. 🤦🏻‍♀️ will figure it out at some point as it obviously needs to be dealt with regardless.

twinkly29 profile image
twinkly29 in reply to floating_

Yes definitely ask while you can!

Sorry you're back in hospital and having such a rough ride, but it's great news about the Omalizumab. I hope it does the trick. 🤞

If you're going to take VitD3 supplements because of taking Prednisolone long term, then this video explains VitD3 and how it works, how to absorb it and maximise its efficiency, its co-factors (other vits & minerals that work as a team - nothing works in isolation).youtu.be/_zqatJkyhPU

Calcium supplements aren't required if you have enough calcium rich foods in your diet though. VitD3 helps the absorption of calcium and the co-factors ensure it's absorbed into the bones and teeth.

If you only take VitD3 and calcium, the risk is poor absorption and into soft tissues, causing calcification (plaque). We assume the body knows where to put calcium but it is easier to absorb it into soft tissues when presented with an abundance of it and without the other minerals & vitamins that target it into the bones.

The VitK should be VitK Mk7 as it's the most effective. Elemental Magnesium is also the most effective. Taking any supplements and PPIs is challenging as stomach acid is necessary for mineral and vitamin absorption and that also goes for absorption of minerals and vitamins from foods. This research paper looks at the challenges ncbi.nlm.nih.gov/pmc/articl...

Finally, a diagram explaining the interplay between VitD3 and its co-factors:

VitD3 and co-factors

I had Polymyalgia Rheumatica for nearly four years. I had a reducing dose of prednisolone from 30 mg a day down to 1mg every 7 days, when I stopped. I also had and still have chronic asthma and Atrial Fibrillation.My GP let me reduce at my own speed. I used the Dead Slow Nearly Stop method and took 2½ years to get down from 30mg a day to less than 10 a day. I had no side effects.

I had a test which indicated the porousness of my bones. I was declared to have osteopoenia which is en route to osteoporosis. I was prescribed a bisphosphonate, Risedronate which caused intense knee pains, and was then put instead on Alendronic Acid which was just as bad. I was also prescribed vitamin C and D3 tablets, which I'm still on 7 years after I started with Polymyalgia Rheumatica.

14 months ago I slipped while going downstairs and went on my bottom with my right leg bent backwards and ended up with a hairline fracture of my right fibula, and subsequently loss of use of my right Peroneal nerve.

That's the only effect which the prednisolone may have caused , but as I only had a test about the porosity of my bones after I'd been on prednisolone for a year, I don't know how porous they were before I started with Polymyalgia Rheumatica.

Good news on starting the MAB 😁

I had a lot of long term side effects from daily pred. Weight gain, cushing symptoms, pre diabetes, osteopeania, vision problems amongst them.

I was weaned off during a 2 week hospital admission in April with a view to checking eligibility for MABs, and switched onto hydrocortisone on discharge.

I had a SST (short synacthen test) in July which I failed quite spectacularly ☺) and have been diagnosed with Adrenal Insufficiency which is a very steep learning curve. I'm still trying to find my optimum lowest effective dose to manage my symptoms and prevent adrenal crisis.

On the plus side, I have already lost a stone in weight since coming off prednisolone abd my appetite has lessened 😁 (although that could be down to the AI ☺).

My advice would be to ask your GP for a DXA scan to check bone density (I have osteoporosis in the family as well), if you haven't been for an eye test within the last 2 years, I would get one done. Also, if you have any symptoms of pre diabetes, them ask your GP to check your HbA1c too (although they probably won't do won't do just at the minute because of the supply issue with blood vials).

All that being said, I was grateful for the preds as it meant I could breathe 😏

How long does long-term mean for them? Indefinite?

floating_ profile image
floating_ in reply to hilary39

They've not said, I suppose when I get to the severe asthma clinic they'll figure it out?

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