Long term steroid use, looking for ad... - British Lung Foun...

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Long term steroid use, looking for advice .

soulboy118
soulboy118

After having a ☎️ conversation with my consultant ( who strangely constantly referred to me being a better man than her 🤔 ) and numerous exasabations it has been decided to place me on 10mg a day prednisolone , I have done a little home work on what to expect but ( there's always a but ) has anyone any advice on what to look out for ( I realise baying at the moon and having imaginary friends or going to bed with glove puppets are signs I need to look out for ) ? , i have noticed a blurring of vision after a course of steroids and being given a taping off course of steroids as well .

Doing the usual searches does give useful information but there's nothing like practical information from my lung buddies ,can anyone help please .

As usual breath easy

Dave

60 Replies
oldestnewest

Hi Dave, I can only say that Pete is on 10mg of pred every day and is doing pretty well on it. If he ever has it increased for any reason, his appetite goes through the roof.

Not sure any of that info helps but I hope things work out well for you. Take care. Xxx😘👍

soulboy118
soulboy118 in reply to sassy59

Thanks carole, ive noticed my appetite goes through the roof as well, im the heaviest ive ever been at the moment , im just over 12st , cheese cake really is my enemy lol .x

sassy59
sassy59 in reply to soulboy118

Ooh cheesecake, lovely. Chocolate is my enemy Dave and I don’t even take steroids! No excuses. Xxx😀❤️

soulboy118
soulboy118 in reply to sassy59

We all have a weakness carole x

Same here, I love cheese cake and have no excuse for my greediness as I’m not on long term steroids. My mum just made a lime and ginger cheesecake 🍰When I have had a course of steroids the munchies are so bad I feel I may as well eat the whole fridge because opening the fridge door would be much too time consuming. 🙄

Mmmm, that sounds lovely HH. Lime and ginger.....yum. Xxx💖😘

Izb1
Izb1 in reply to sassy59

I was just thinking this Carole, I have never had lime and ginger cheese cake, it sounds heaven x

Mikeyb955
Mikeyb955 in reply to soulboy118

Lol made me chuckle I went from 8.4 to 11.13 after having a few doses during my asthma copd Overlap.. Flare ups... However my dietician is over the moon meanwhile I walk round with a food baby... 🤣🤣

Okay Here goes! I recently went down with Temporal Arteritis Which meant I was was put on 80mg of Steroids a day! It was not a pleasant experience at all I had spots all over the place that were painful. I got and still do get cramps in my legs feet and hands. Even after my blood test I was still showing inflammatory factors so had to take for another month at the high dose. What has now happened in my case is my liver, Kidneys and Thyroid have gone a bit awry? But to add to all of this I am now Diabetic! But it might be because of the high steroid dose?

I am now on 30mg Steroids a day and will be reducing down but it may well be Late December before I am off them completely?

With the reduction process I am noticing less spots but do have a scaly skin at the moment. I have not howled at the moon but the wife has complained of my snoring :) I am also sleeping better than on the 80mg a day that was a nightmare body tired brain just wanted to party!

My tip is Make sure that a exit plan is made ASAP and stick to it.

BE well

soulboy118
soulboy118 in reply to Offcut

Cheers Oc

Caspiana
Caspiana in reply to Offcut

Hello Offcut,

Many transplant patients develop diabetes due to the high amount of steroids we have to be on. So yes, I'd imagine your diabetes is steroid induced. Hopefully with reduction the diabetes will right itself and it is temporary. Take care. 😁👋

Offcut
Offcut in reply to Caspiana

It does seem that they are possibly the cause but I am doing all I can to keep to a diet just in case?

Caspiana
Caspiana in reply to Offcut

That is the sensible course of action. 👍

Patk1
Patk1 in reply to Offcut

Has your chest improved whilst on them offcut

Offcut
Offcut in reply to Patk1

Funny enough no, my breathing has been worse! I am not getting a Heart rate below 100 bpm at the moment and it has even jumped up to 165 bpm!

Patk1
Patk1 in reply to Offcut

Thats not good - u need to ring dr with hr soo high.

Offcut
Offcut in reply to Patk1

DR aware but not keen on upping my heart tabs until my other new issues are under control?

Hi SB, I'm also on 10mg each Day, Yes, Put weight on, Heaviest I've ever Been. Portion control on the smallest Plate I have. I love Dark Choc. allow myself 1 slither per Day, so a whole Bar lasts me 1 week. ( low calorie Yogurts, some are so Good). Blared Vision use Eye drops, I do need to go to Specsavers, Too far away, & I'm shielding, I was told they can visit your home, Must look into that. Well, as I will be on Steroids Forever, I know all the Signs now and have to adjust my Hectic Life Style to oblige the Steroids. Ha Ha. make you go a bit daft also, rise above it . Go with The Flow Hun. Be Sensible. Stay safe. Love C. XXX

Carnival567
Carnival567 in reply to Hacienda

I had a home visit from Specsavers and it was excellent. It took three weeks for my glasses to come. There was an excellent choice of frames. There was no extra charge, which I hadn’t expected. The glasses are accurate and fit well, but they will come back if necessary. Thoroughly recommended as far as I am concerned.

Hacienda
Hacienda in reply to Carnival567

Thank You Carnival, Positive News. Tomorrow Morning I shall give them a Call. Stay Safe. C. XXX

Hacienda
Hacienda in reply to Carnival567

Hi Carnival567, Just to update you, Thanks for the Info. I have now given Specsavers all my Details . Just now received a Call to say they will be here on 12th November. Thank for your Help, Stay safe. Love. C. XXX

Carnival567
Carnival567 in reply to Hacienda

Good, I hope all goes well.

garshe
garshe in reply to Hacienda

I went to Specsavers 2 weeks ago. Had eye test then had to go back to choose new glasses. Hated it as not allowed to take anyone and had to wear a mask. Very safe as controlled entry .had to put any glasses touched to one side to be sanitised. I was in a corner trying to see what glasses suited me by moving the mask down around my chin , really difficult. Waiting for phone call to collect them now. Hopefully I have chosen suitable ones 😱 If not I will go back and change them. The optician allowed me to move the mask down to uncover my nose during eye test as was getting misted up. So annoying as everything thesedays is a nightmare. Keep safe beautiful lady. xxSheila 💕💃💃

Sops
Sops in reply to garshe

Know what you mean. I went to vision express this week and could not see on the various testing machines as misted up, could not put forehead on the headrest as mask too thick, chose 2 pairs of frames and had to go home as overwhelmed with bustling staff, customers etc. No second opinion as had to go alone, and queue outside store which is situated within an indoors mall, have asked to have specs delivered as just needed to get out to breath. Felt very panicky,

Sopsx

Piperava
Piperava in reply to Hacienda

Steroids speed up the maturity of cataracts.

Hacienda
Hacienda in reply to Piperava

Yes, I agree Hun. Hope they can sort mine out. Much Love. XXX C.

I was never a " foodie" C but till I adjust my sleeping habits to confirm to this pred use im gonna have to put a lock on the fridge because nighttimeraids are to easy , ill sort it and not let the crazies take over lol x

Oh my worse nightmare Dave. The only time I’ve been on steroids is when I’ve had an exasperation. 7 days with antibiotics but as soon as I took one steroid I had the munches, low mood, exhausted through not sleeping and dry itchy legs!! Great eh!!! I recently had chest infection and only took antibiotics- phoned doctor and said I can’t take the steroids will the antibiotics cure me alone? He said try - so no steroids this time and it cleared.

I really feel for you because they do the job but the side effects for me are difficult.

Hopefully you won’t be on them too long

Take care

Night time munchies are THE worst kate , ( i know how Billy bunter felt now, that damn fridge keeps calling my name) , ive got to admit to using face wipes to sort the dry patches on my legs out and they actually work .what I dont like is my active mind going all over the place , my body gets tired but my brain is in overdrive mode ,hopefully this will settle as my system normalises the steroids,

Glad you're on the mend from your infection

Take care

Dave x

Well I’m sorry I can’t be much use to you. I’ve become so used to bits dropping off or ceasing to work as they should that I’ve given up trying to find the reasons for that happening. 🤷🏽‍♂️

soulboy118
soulboy118 in reply to Don-1931

Nothing dropped off here yet don but I do keep checking 😉

Hi Dave, you only need to taper off as the doc recommends usually with high doses. 10mg daily (maintenance dose) is a fairly low dose, and I guess if you do really well on it your doc may consider reducing that to 5mg at a later date.

Hopefully your doc will have prescribed calcichew D3 Forte as well or the going NHS cheapo equivalent, I wonder have you had your vitamin D levels checked to make sure you are not deficient.

Oral steroids after time can impact on bone density hence the calcium and vitamin D3 supplement.

Chat with your consultant about your Vision with the current tapering off dose you have been prescribed.

Hope things improve for you real soon.

soulboy118
soulboy118 in reply to Bkin

I'm on d3 twice daily anyway Bkin, my main concern at the mo is my eyes, someone has mentioned drops to help elevate this from specsavers, ive always been one for taking the least possible medicine I can get away with so when I settle on this dose I probably will experiment myself with a lower dose , ( sigh) I guess we just do what we have to to muddle through dont we .

Thanks for the advice

Sorry if I missed this, but is this going to be a long term thing?

Seems so Maggie

Patk1
Patk1 in reply to soulboy118

Id get yr eyes checked soulboy asap.hi dose for 3mths recently,caused my cataract to cloud my vision.on plus side,ive been today and theyre going to remove it,with only 3mth waiting list

Hmm they aren’t great...like the others have said...the increase in appetite, spots. I actually can’t take steroids long term now because they give me suicidal depression...I’m probably one of not many who has this side affect, but just keep an eye on your mood! Diabetes can be the other one and osteoporosis.

There are lots of potential side affects but I guess your doctor thinks you need them more for the condition they’re treating, than the side affects risk.

Just keep an eye on any new reactions and speak to your doctor if they become too much to deal with.

On the plus side...they help lots with reducing inflammation and do keep exacerbations more under control!

Take care

Dee

soulboy118
soulboy118 in reply to madonbrew

Thanks dee, luckily the 10mg im on seems to be a relatively low dose and I do have in mind lowering that dose at the earliest possible moment, I know life is like a "box of chocolates " they say but so is copd except all the chocolates have disgusting flavours, ( i won't mention them it is near tea time) , guess its grin and bear it time till I get this situation regulated .

Have a good day dee.

Patk1
Patk1 in reply to madonbrew

Ive had the manic depressive episodes with them madonbrew - dreadful.i used to b on 40mg for exacerbations but now ill only take 30mg.v scary and hard too on those around.but,theyre so very necessary at times.i now b much more mindful, whn on them,to try ward off anx

madonbrew
madonbrew in reply to Patk1

Not fun hey! Sorry you have these awful side affects too! I can just about manage a short course but my last lot was quite close to the one before and I think it’s definitely affecting my mood. But like you say, sometimes so necessary!

I used to have them long term for another autoimmune disease but it really wasn’t good. Thankfully I was accepted for biologic infusions for it instead!

Take care Patk1!

Hi Dave, I’ve been on and off steroids for years but on them consistently since August 2019. You shouldn’t notice the very classic moon face at that dose but may notice bloating around your face. I’m on 20mg and find I’m constantly hungry and can be quite short tempered. It definitely makes me irritable which isn’t my nature and I’m a bit lower in mood. That said, the improvement in my general health makes it worth the trade off. I drink loads of water which helps the hunger pangs and keeps my skin looking pretty healthy. Best of luck x

soulboy118
soulboy118 in reply to crashdoll

Thanks CD , these steroids are making me ravenous though, its a constant battle ,upside is my increase in size will be a good excuse to go clothes shopping and my wallet needs a day out lol

After being on prednisone for over 12 months starting on 40 mg ,my sugars increased ,I am now classed as having post steroid induced diabetes ,my hba1c was 49 (only 1 over into diabetic range) but after coming off the steroids I am now in the prediabetic range ,also puton about half a stone during that time ,have now lost over a stone .good luck x

Hello Dave, 😁

I am on a maintenance dose of seven milligrams. That's not much. But I have been on a maintenance dose for years. Post transplant I was on a maintenance dose of 30 mg for a while gradually tapering. As people have mentioned, moon face is an issue, but mine has gone down now as compared to last year, sometimes fatty growth on the back of the neck, I had this a bit post transplant, it seems to be okay now. I definitely experienced facial hair growth, ( I can relate to your consultant 👨) but I took care of that and now the problem is gone. Paper thin skin, I have also, so I am diligent with the moisturiser. My eyesight has deteriorated and I am due glasses which I should stop dilly dallying about and see to. Weight gain is extremely common, but my weight went down since transplant. Not everyone will experience side effects. Just be vigilant and if you notice any extreme changes please do call your consultant. Drink plenty of water. Take good care.

Cas xx 🙋🐕

Caspiana
Caspiana in reply to Caspiana

P.S. They can make some people very cranky. 🙀

I highly recommend u see optician re blurred vision - i left it 2 months and they found retinal haemorrhages and cataracts obscuring vision.im glad i went x

I have been on steroids (prednisolone) for 45 years.... for Sarcoidosis.. Initially, l was on bigger doses but after after say 10 years I was put on a maintenance dose of 5 mg a day. One must never take yourself off this dose, unless the doctor prescribes more. Initially I put on weight and had a bigger appetite, but now I am fairly thin...6 feet tall and 11 stone in weight. The problem is that I easily bruise and bleed, also don't heal from cuts easily, which will never change for the better.

That is the downside of Prednisolone.

Hello soulboy,

I have been on these bloody things for 3 years. In the beginning I was on 50mg prenisolone per day for 3 months and very slowly tapered to 10mg over 18 months. I can go no lower. I have IPF and chronic organizing pneumonia which took over 12 months to settle. If I lower the prednisolone dose beyond 10 mg the pneumonia returns. So what's my choice?!

Side effects have been numerous for me. Apart from the moon face, a normal reaction, I had continual insomnia which has to some degree settled on the lower dosage; blood spots on both shins which have now become a nerve problem; blurry vision with cataracts; a bushy beard, very fetching for a woman; gum nerve problems; when on the higher doses, and the shakes. Apart from that nothing much really!!!

Every specialist except for my current one have stated that I have to get off the steroids as long term use is dangerous. Really? 10 mg is acceptable but you, as a patient, have to weigh up what is best for you. For me, quality of life is everything. Living with a terminal illness, IPF, gives me maybe a couple of years left. I want to live my best life.

Everyone reacts to drugs differently.

Take care

I have been on 7.5 mg. day, the only problems I have had is weight gain and thin skin. Protect your arms and if you cut or bruise them don’t use normal plasters.

soulboy118
soulboy118 in reply to mick5

Cheers Mick

mick5
mick5 in reply to soulboy118

No sun bathing on beach.😜

Hi dave been on steroids for year now 10mg only problem i had was when they increased dose to 30 mg when really bad chest inf it threw me into diabetese they took me of rapidly just about got it bak under control now scary though so b careful if locum not cons increases dose

mick5
mick5 in reply to Bearincab

The last few chest infections I had they told me not to take extra prednisone as it was in my system already and would take time to decrease back to normal level.

I have been on them for around 6 months now. Increased appetite as the others have said but I needed to put weight on. I wake several times in the night and can't get to sleep again sometimes. I have a cut on my leg which still hasn't healed three weeks later. I was also prescribed a stomach protector that I need to take with them. Hope this helps.

Looking like I might need a proton inhibitor myself to protect my stomach A. Thanks

I don’t think anyone has said you should take them first thing in the morning to try to mitigate the insomnia. Weight gain was a problem for me but I have also managed to lose a lot of weight whilst on steroids. 🤷🏻‍♀️ I had mood swings. You should also ask if you need adronic acid to help protect your bone health. At doses over 7.5 mg your adrenal glands get lazy and so you would have to reduce slowly to wake them up again. On the plus side a lot of the aches and pains were better and I had more energy. Good luck I hope they help you.

I've been on 10mg for just over a year now & the side-effects haven't been as bad as I thought they would be. The hospital pharmacist recommended taking them as early as possible in the morning - & definitely before 9am - and with food. I've not had increased appetite & have lost some weight - but that may be because my other medication can reduce appetite. I have smaller meals & light snacks which might help - so eat a little 5 times a day. I also drink lots of water & tea. On the plus side I don't cough nearly as much as I used to (I have ILD) and my breathing and ability to exercise have improved. My lung function showed immediate improvement, but I've not been able to have any tests for a while, so don't know how it is now - but I feel fitter and able to walk up hills a little more easily. Everyone reacts differently, I was dreading going on them, but it's not been as bad as I thought it might be. Best of luck!

Strangely enough,I dont cough since being on them either!

Hello There, I have been on prednisolone off and on for years every time I have an exacerbation, I have the usual side effects, unable to sleep, and terribly dry skin. I had new glasses about 8 months ago and was told I had the beginnings of cataracts. All of a sudden I realised I could hardly see the TV! (I have never worn glasses for long distance) so I made an appointment at Specsavers, the optician was really surprised to see I had lost 8 points in 8 months! he has referred me to the hospital for a cataract op. The ONLY plus side is I have 3 slipped discs and the Prednisolone helps with the pain!

The key purpose of steroids is to reduce "inflamation", which inter alia suppresses the immune system, for example in the case of organ transplants to prevent rejection. With copd sufferers the down side is often the issue of frequent chest infections as the immune system is suppressed. If this happens the sufferer's gp clinic has automatic provision of antibiotics and prednisolone, which is called a "rescue" pack, available over the phone without gp appointment. But I dont think this an ussue with asthma (withiut copd).

I suffer a heck if a lot from the chest infections, 6 or more in a year. I've had to take up exercise (outside, fresh air) and radical improvement in diet. The two have worked really well although, nevertheless, I still get quite a few, which is a pain in the neck. Having to have time of work is the worst of it, as without it the infection just won't go. Hopefully, therefore, it isn't copd you suffer from. Longterm steroid use reduces ones natural production of corticosteroids, such that the adrenal cortex can atrophy somewhat.

I went from 12st 8 (bmi max 12st 5) to an unbelievable 14st 3, in around 9 months, once the weight gain commenced. It has been really hard work to shed it. I'm down to 12st 7, with a stone or so to go (hopefully within 4 months).

The only alternative to serious weight watching, for those who are unlucky and get the prob, is a substantial amount of regular exercise. So called HIIT plus eg a regular fair length walk 5 times a week. Rome wasn't built in a day, as it were, so it takes time to build up the exercise.

There are a lot of other side effects, from minor to substantial, but luckily most only get a few of them, some pretty much none. Look them up and look out for them over the period of 2-3 years (it took me a long time before I started getting any).

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