The good and the bad of taking steroids - British Lung Foun...

British Lung Foundation
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The good and the bad of taking steroids

Anneinoxon
Anneinoxon
34 Replies

I have been taking steroids for well over a year now there are certainly ups and downs in taking this medication.

The good news..

my disease (non specific interstitial pneumonia aka NSIP) does not seem to be getting any worse

My hair was always thin and straggly is now thicker and curled

It has cured my IBS which I had had for years!

Now the side effects of panic hunger pangs have subsided my appetite has reduced so much I am actually loosing weight. Yippee this is the first time in 30 years since I have been able to loose weight! I was worried about this at first but my consultant was entirely unsympathetic... as she said it will do you and your lungs good to loose some weight.

The bad news is

I am laid low very often as I seem to pick every infection in the world as my immune system is non existent

My skin is like tissue paper and I bruise badly and my skin tares just by touching or scratching my skin. My arms and legs look as though I have been beaten up!

I have to take a battery of drugs to mitigate the side effects of the steroids, shake me and I rattle!

It looks as though taking the immune suppresent drug Mycophenolate has turned a benign sore on my cheek to a low level skin cancer (very treatable accoring to my doctor )

Ah well if all this what it takes to keep me alive so be it. I am not going to worry about it, take every day as it comes I say. I will stay happy :)

34 Replies
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sassy59

You have the right attitude and keep on going. Good luck to you. Xxxxx

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Anneinoxon
Anneinoxon
in reply to sassy59

Thank you I will. In fact I am sat here right now with my laptop planning next year's holidays. How optimistic is that!

6 likes
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sassy59
sassy59
in reply to Anneinoxon

Well done you. Xxx 👍

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Hidden
Hidden

Hi Anne good outlook..I've been on and off large doses of steroids most of my life on 7th box of ten as we speak thin skin yes..osteoporosis yes,I'm blown up like the Mitchellin man,my prob is weight gain,lifestyle not to bad but that empty/hunger feeling aaaaw

2 likes
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Anneinoxon
Anneinoxon
in reply to Hidden

I can sympathise with the hunger, my hunger pangs were awful, like having a panic attack. But since my dose has been reduced hunger panic attacks are no longer much of an issue. But I am now so exhausted with the disease and the heat that I am too tired to eat very much. Hence the weight loss. Good news I suppose!

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Hidden
Hidden

Glad you are fighting on Anne 🌼🍀😊

One day at a time with steroids and other meds. I know how you feel...

I am tapering down a little..this week on 10mg for a month.

We have good and bad days, we know that the good day turns out of the blue. I had one of those yesterday. Woke up feeling grand 🤞so did as much as I could! May not be the right way to go about it 😃

Still something to focus on.

Enjoy today!! ☀️🌺

Fran x

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Anneinoxon
Anneinoxon
in reply to Hidden

Yes do as much as you can on the good days as when the not so good days arrive you can sit down, rest and contemplate with no guilt about tasks not done. Bad day yesterday for me the humidity levels here in the Thames valley were not good so my oxygen levels were low 😤

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Hidden
Hidden
in reply to Anneinoxon

Thank you for the advice Anne, you are right 😊

Yes, changes in the weather have been difficult. It is humid by the Thames. I used to live in Fulham, London opposite the Thames, had awful fog. Well, it was on my bus journey to work so I didn’t think when I rented the flat at the time.

It seems cooler now here. But silly me I live by a lake! 😃

Do you have nebs as well? I find Salbutamol nebs help me with my oxygen levels. I don’t overdo them because they give me muscle cramps in the legs but twice a day on a bad day helps me out.

Wishing you a better day 🤞

Fran x

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Anneinoxon
Anneinoxon
in reply to Hidden

No subatamol doesn't really help. A good dollop of oxygen from my oxygen tank helps! Looking forward to a better day today😀

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Hidden
Hidden
in reply to Anneinoxon

Great then 😃xx

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Hidden
Hidden
in reply to Hidden

Ahhh thankyou Happylondon...you have solved my problem...the reason why I've been getting cramp!! 😀😀😜

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Balloo

Hia I do this Steroids story. Paper skin a bore but I figured they kept my dog going years so .trouble is getting the dose right .

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Anneinoxon
Anneinoxon
in reply to Balloo

Woof woof, that says I will going for years too.... I hope!!

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ChristineTaylor

Biggest problem I find with steroids is the sleeping or to be precise the not sleepunf - How do you deal with that?

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Hayley_

I find that with steroids, but the earlier I take them (like as soon as I wake up) the better I can sleep at night. I won’t take them after about 10 in the morning as then I know I will be awake most of the night.

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Anneinoxon
Anneinoxon
in reply to Hayley_

That is interesting as I always take my steroid dose about 8am, so maybe that is why I don't have much of a problem with steroid non sleeping!

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Hayley_
Hayley_
in reply to Anneinoxon

I would say so. Or it could be your one of the lucky ones that doesn’t suffer that as a side effect. It’s really not nice 😫

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Anneinoxon

I have always been a light on/off sleeper so I haven't seen much difference. BUT.. due to the 3 bouts of pleurisy I have had this year I have been left with low level pleural pain aound my left lung. I get off to sleep ok (I am exhausted by the end of the day) but the pain gets bad after a few hours sleep and that wakes me up and keeps me awake. I have sorted that by not taking all my recommended doses of paracetamol during the day, but save a dose for when I wake up in discomfort. I am back off too sleep within 20 to 30 mins for the rest of the night. So paracetamol seems a good sleep aid. I am not sure that the doctors would approve but I do not take more that the stated dose for a given 24 hours, so do whatever it takes to make life comfortable I say!

Hope you find a solution! Cheers A

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ChristineTaylor

I too find the pain and coughing wake me after it has taken maybe 2.5-2.5 hrs to actually go to sleep. I take oramorph around 8.30 then cocodomol when I actually go to bed and like you I always keep within limits but sometimes get so frustrated because I am exhausted and just cannot sleep. I take the steroids at 6am in the hopes that it may have worn off a bit. The only readon I continue to take the steroids is for the relief it brings to the constant coughing. Hope you keep geeling the benefits - I too have lost weight on them 2.5 stone since March bit too much really but keep looking forward x

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Anneinoxon

That really is awful, not to be able to sleep even when exhausted. You would think that the research boffins would have come up with something better concidering the many many side effects of steroids have. Sleep deprivation must be one of the worst as it is a form of torture.

My grandaughter is at university at the moment studying molecular and cellular bioscience so I have told her to get stuck in and find a cure for PF!

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ChristineTaylor

Good for you hope she does it!!!!

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Anneinoxon

I will keep you posted! The problem is that she is only about to start her second year, so it may be a while yet for new cures.

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ChristineTaylor

Well if not for us the next generation will still be in need

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Hayley_

This may sound like a silly question but if your immune system is virtually non existent then why are you on immune suppressing medication?

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Anneinoxon
Anneinoxon
in reply to Hayley_

No it is not a silly question! Taking steroids AND immune suppression drug is evidently the "gold standard" treatment for my particular for of PF as it is an auto immune disease. My immune system is attacking my lungs as it thinks they don't belong to me.... stupid immune system I have these lungs for 71 years! :(

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Hayley_
Hayley_
in reply to Anneinoxon

Oh dear, that sounds awful. Does that mean you are more susceptible to more illnesses?

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Anneinoxon
Anneinoxon
in reply to Hayley_

Yes it sure does, so now I have to take antibiotics three times a week to keep the dreaded infections at bay. I have had pneumonia 3 times since Christmas, it's a wonder I am still alive and kicking!

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Hayley_
Hayley_
in reply to Anneinoxon

Oh gosh, well you keep fighting and keep your chin up. Wishing you all the best ❤️❤️

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Anneinoxon
Anneinoxon
in reply to Hayley_

Many thanks for your kind thoughts x

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Candyred

I agree! We fight on together .. chin up xx

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Sjf129903

I'm with you except the hair I ended up having my hair shaved off

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Anneinoxon

Such is the bizarre side effects of steroids...some end up with thick curley hair and others with none! I wish there was an alternatives.

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gilles

awesome good attitude this is exatly what's happening to my wife and that's how she looks at it and its been 2 years not getting better but not getting worse that's the main thing good luck and thanks for sharing I forgot one thing is different she gain weight instead but that's ok she's alive :)

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Anneinoxon

Thank you for your kind response. Again....such is the bizarre side effects of steroids, each person seems to have an unique response to this pesky drug. Good news though that your wife is not getting any worse, that has got to be a bonus. I hope she maintains her health.

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