I was just wondering how long you can stay on a high dose of steroids for when you have copd with 23% lung capacity and on oxygen 24\7

[Dasher50]

As abovej

[Kjg14]

The Respiratory nurse or your doctor should be giving you this Info. Give them a ring better safe than sorry

[Hacienda]

Hi, I'm on long term Prednisolone now along with Steroid Inhalers, I am FEV1 17%, Oxygen 16/7 though over the past few months have Gone up to 24/7 then down to 16/7 or whatever I know I need, It's a Juggle really. See my Consultant in April, so will continue the Preds till she says otherwise... maybe she can produce a Miracle, It's what we all hope For, Stay as best you can. xxxx

[Corin1950 in reply to Hacienda]

Do you mind me asking you what your daily dose is?

Love

Corin

[Hacienda in reply to Corin1950]

Hi Corin, After being on Full 7 day Dose of 30 g a day over a 3 month Period,I was put on long Term, X2 @ 10g Daily. I have reduced to 1 x 5g as the 10 was too much, I shall ask My Consultant in April, if I have to Continue with the 5g. Hope your ok Hun. XXX C.

[powderpuff in reply to Hacienda]

Grams or mgs Carolina? 🤔

[Hacienda in reply to powderpuff]

Mgs xx

[Corin1950 in reply to Hacienda]

Thanks I’m doing alright. My husband hasn’t had any infections this winter touch wood so hoping he will be well enough to have valves fitted in April.

X

[Hacienda in reply to Corin1950]

Sorry not replied sooner, I have been poorly for 2 days, feel a little better now. Hope

[Hacienda in reply to Hacienda]

Dam phone, hope all goes well for Hubby ,,he should feel the difference with his breathing, I did. Love n hugs Corin. Xxx

[wheezybronch]

As long as your doctor thinks it is necessary is the easy answer. If you believe that you can do without them, speak to your doctor, if unhappy ask for a second opinion. Prednisolone saved my life and stopped me panicking when short of breath. I wish you good luck.

[pegbl]

I hope that miracle comes for you. Xxx

[Caspiana]

None of us can answer that Dasher50 , it us up to the doctor who prescribed you the steroids. Discuss it with them and any worries you may have about being on the steroids. Take good care.

Cas xx 💐

[Dampier]

oh Poor you - I have a FEV1 of 18% have been on a 7.5% maintenance program of prednisone since August last year - am on oxygen only at night time - having some good days and some not so good but maybe they could settle you - as everyone says talk to your doctors. Hope you get some relief.

[GintyFerguson]

Sorry, I cant say at all but the body is tough and I know the mind can be too. Some people I know have been on low dose steroids for a year. That doesnt really help but speaking to your doctor for an honest opinion will.

I managed to get my consultant to give me a guess on lifespan and by his reckoning I have 4 years left! If the virus doesnt catch me first! Good luck ....

[PollyP]

Personally I get off them as quickly as possible- they work short term but do terrible damage long term.

Do discuss with your doctor before acting on advice.

[Hidden in reply to PollyP]

I agree with you I was on high dose for uc been weened off them but the side effects I’m still suffering with even angina and my breathing worse it’s ever been had copd 15 yrs and coped but everything else dr keep giving me makes me worse

[pecede]

Thanks Dasher50, as you know everyone is different so my experience probably won't mirror yours but I'm on 50 mg a day, I understand it's the maximum over here. I've been on it for over a month now and was able to lower the dose to 47.5 mg a day and then tried to go to 45 mg but the results were a disaster and I nearly ended up in the hospital emergency. The fact you are able to lower your dose is a big plus in my eyes and I suggest you continue the good work until you are taking zero. My problem with this large dose is side effects, currently I'm grappling with extremely swollen lower legs and of course who knows what's going on below the surface.

Pred is a life saver and without it I would be six feet under BUT it has its downside, some people here refer to Pred as the Devils Tic Tacs, how appropriate.

[Durcot]

I'm sorry , you should stay on your doctor to find out what you need to know.

I dont like or trust steroids but I use an inhaler which has steroids in it. My doctor said steroids in a inhaler isnt as sever than other forms. So I can be on my inhaler indefinately.

Check with your doctor.

Gods Blessings

[Dasher50 in reply to Durcot]

Thanks for all your help back at doctors tomorrow so will see what they have to say