Prednisolone

[Two2sheds]

Evening all, just wondering if anyone takes these long term. I have been having trouble since Xmas, and have had about 3 courses. They do seem to be the only thing that helps me.

[sassy59]

Pete takes 10mg each day and wouldn’t be without them. Xxxx

[Caspiana]

I have been taking them for about three years Two2sheds . No choice. 😊

[Two2sheds in reply to Caspiana]

Hi Caspiana, how many do you take, and is that every day.?

[Caspiana in reply to Two2sheds]

I have come down to 5mg a day. Every day. I wanted a break from them but my doctor said no to that. 🙋

[Two2sheds in reply to Caspiana]

Thanks for reply👍

[Foxy79 in reply to Two2sheds]

Hi I'm foxy79 RE perdiesoline

I have been on it since 2009 I started with 60mg went to 70mg then down never off even know on 20mg but it's to late damage is so severe I have Osteoporosis and I'm 37 years old and that is a big issue for transplant bone are soo weak they can't do it and where my body depends on it I can live without it cause I will fall Ill cause I had TB Tuberculosis my consultant gave me 60mg with medication then after 15months he retired and I carried on no one saw it and lost me in the system cost my health Keep a tab on the medication and the side effects please

[joyce74]

I too started my 3rd dose since Xmas yesterday. After visiting a son in hospital I picked up a really bad infection . I am always reluctant to take them but without them I am like a clockwork robot that has been slowly winding down . I have less sleep while taking them but enjoy the extra energy I get. Take care.

[AdrianL]

I have been taking them for three tears in various doses from 5 -15mg. Cant come off as my lung problem re-occurs. Am currently on 5mg with a supplementary drug but to be honest I felt better when on the higher dosage of Prednisolone.

[hallentine47]

I first used them 12 years ago but only when I had infections and the course was always 1 or 2 weeks. Over the last 3 years ad since a 3 week spell in ICU with Pneumonia I have taken intermittent doses of 30 and 40 mg a day and have been on a permanent maintenance dose of never below 8 mg day. My ability to breathe seems to depend on these steroids unfortunately. I have lost teeth and my skin is tissue thin as a consequence. Par for the course with COPD Emphysema.

[Two2sheds in reply to hallentine47]

This appears to be my problem. When I use my rescue pack, I feel invincible, but once I get down to one a day, the problems start again.

I only finished a course last week, and in the early hours this morning I thought I was going to end up in hospital, I was short of breath just laying in bed. So I have started on another rescue dose this morning, luckily I am seeing the respiratory consultant on Monday.

[hallentine47 in reply to Two2sheds]

It may mean that you will be better on a maintenance dose but best to discuss with your consultant.

[oooodicky]

Hi 👋 long time use of steroids give you brittle bones D2 capsules counter this so beware.

[Two2sheds in reply to oooodicky]

Hi, I do take D3 capsules daily, I know the pred. Is a trade off, but what do you do?

[oooodicky in reply to Two2sheds]

Hi 👋 my fault it’s pro D3 🧢 I use steroids about 3/5 times a year, I have severe copd but I take one a day to counteract the steroids, tnx.

[shadow4me]

Ive been in the same boat the last few months to many steroids and like you i feel invincilble while taking and when i finished the course i feel ill and depressed lol if only someone would discover a replacement with the good affects but erase all the bad xx

[dodgylungrunner British Lung Foundation]

I've been on 10mg a day for years now to try and stop my immune system from going haywire and further scarring my lung tissue - I have a rare type of ILD called PPFE. It hasn't completely stopped the lung disease progression but it has slowed its progress. The flip side is that I'm more susceptible to colds and infections so I'm also on long-term doxycycline to try and give me a base level protection. Very difficult juggling act!

How have you responded to the pred? Had many side effects?

[Two2sheds in reply to dodgylungrunner]

Hiya Dodgy, when I am on them the only noticeable things are huge appetite, and bruising easy, and maybe a bit manic, but when I come off them my breathing is awful, and no amount of ventolin helps.

[Hidden]

I have Vasculitis, and all those who have it, have to take massive doses of Pred. It's an essential part of the treatment. Most of us start with 40-50 mg daily, reducing to 5-10 mg daily if we're lucky. Although many never manage to get this low due to flares. Steroids over 10 years isn't unusual for us, along with DMARDS, chemotherapy and/or Biologics such as Rituximab.

[Mollie01]

Hi Two2sheds I have been on Prednisolone for 4 years and have managed to get down to 10 mgs daily. Any lower and I become more breathless. I bruise very easily and got sudden onset cataracts. I have annual bone scans. Someone on here once called them "The Devils little sweeties" and that's just what they are lots of side effects but couldn't live without them.

[Two2sheds in reply to Mollie01]

Thanks Mollie, I think I will end up with a daily dose, oh well.

[jimbrnfld]

GM Two2sheds,

I am strictly replying with my experience, and the results. I have been taking prednisone daily for 3-4 years for my COPD and is the only application that is helping me to breath and have a better quality of life. As we all know there's always the side effects. Again, this is my opinion from the results. I would rather face the consequences for this application then to struggle with the inability to breath which, you could also try the advaire discs, spiriva..

[Two2sheds in reply to jimbrnfld]

Hi, and thanks, that's the way I see it. I have had spiriva in the past, and now I have Fostair nexthaler, and eklira genuair aclidinium bromide, as well as carbocisteine tablets, lansoprazole for my stomach and the vit D

[helenlw7]

I e been taking them for about ten years almost permanently at various doses between 5mg and 60mg. I’ve tried to reduce the dose over the years and am now happy on 7.5mg. The downside of steroid over use is that the adrenal gland stops producing cortisol. I have now been diagnosed with adrenal insufficiency, and if I had my time over again I would try to get off steroids altogether.

[greatauntali]

Although my breathing improves greatly when I am taking them, I have now started to get some unwelcome side-effects - difficulty in passing urine being of the greatest concern and that is to say nothing of the pressure behind my eyes and more recently, constipation..... but at least I can breathe a bit better.

[Einnob70]

I've been on high doses of 60 mg for a couple wks gsradually goin down to 40 mg and 30..but ended up In hospital for 5 days. ..now just getting off them within 5 days. The lady keeps talking about coming off them..me...