A Long Term Prednisolone User

Treatment and medication
1

I've been interested to read other peoples experiences of Prednisolone on this site and, as a long term Pred user, thought I'd contribute.

I was diagnosed with Sarcoidosis of the lungs about 15 years ago.

At the time my airways were so badly inflamed and scarred, and my breathing seriously impaired, I was told there was nothing anyone could do - which I thought was the doctor's way of telling me I was going to die (doctors and their 'bedside manner' leave a lot to be desired!)

Anyway, I was put on a big blast of Prednisolone for a month.

Within the first two weeks my persistent cough disappeared, and my breathing improved, much to the suprise of the consultant.

Also, I experienced a 'steroid high' for a short time, which made me think (rather foolishly) that I'd recovered.

Other side effects at the time were: increased appetite (and weight gain) moon face, and some spotiness.

Now I take about 10mgs of the drug a day, as the disease is still lurking, and I will have to take them for the rest of my life, even if the condition clears up, as my adrenal gland has stopped producing the drug naturally.

My greatest concerns now are the more unpleasant side effects (stomach ulcers and bone thinning) of long term Prednisolone use but, to date, I've been mostly problem free and am just very grateful for the drug's existence.

2

Hi - I have c.o.p.d. Chronic obstructive airways disease for nearly 14 years and have been on pred. for the last 10 years. I used to take 5mg. per day unless I had a bad flare up when it would be increased to 40mg. for ashort term. NOw I am on anything between 30-40mg. as my breathing is so bad now. Most of the time I am confined to bed /chair. Like you in the early days I was on a high, used to spend money like water and felt really good for a time. It has taken a long time for the side effects to show. MY vision is bad, moon face and barrel chested. Skin is so dry it peels off and I only have to brush very gently against some thing and I either rip or have great bruises - tissue paper skin !If I did'nt take it I don't know what would happen but I think my system may be immune to it along with all the other drugs I take. I also have steroid related diabetes which is anotherproblem in itself. Yes, in my experience Pred. is a wonder drug in its way - at least its kept me going- but like everything else there is always a price to pay. Let me know if I canbe of anymore help.

3

I just like to know if your 'moon face' has changed after reducing your dosis of prednosolone to 10mg.

I am looking so rediculous that I am afraid to go out. I am now on 16mg down from 25mg.

4

Hi - I was diagnosed initially with Sarcoidosis, and then with Alveolitis after 2 years  of no energy or appetite, a 30% reduction in body mass, and a lung biopsy.

50 mg of Prednisolone for a week and I began to return to normal health, but it took over 6 months to regain weight.  That was 20 years ago, and after 5 flare ups of the condition I returned briefly to 50 mg and then slowly back to 5mg where I have been for almost the whole 20 years.  I must admit that I am not aware of any side effects such as moon face, sore eyes, aches and pains, and the only effects of high doses is inability to sleep for long plus increased appetite. My main problem is that I now do not produce body cortisone and thus have no resistance to infections such as head colds, and 5 times I have been admitted to an ICU with

confusion, no memory, and continual vomiting.

An Endochrinologist has advised that I must stay on a min. of 5mg for the rest of my life and increase in times of excessive exertion, o/seas travel etc.

My mother died from a stomach cancer, and I have recently shown signs of chronic inflammation of the Gastro- Oesophageal junction, and now take Nexium 20mg daily to minimise the effects.  Re bone thinning, I have also had tests which indicate bone strength is OK, and I also take Calcium tablets as insurance.

Apart from that, I take my 5mg daily and life goes on, but I suspect that if I stopped completely after all this time that I would experience tiredness, weak limbs, and a general feeling of weariness and poor appetite.

 The main problem with Prednisolone is when taking long term your body ceases to produce it, and it is then required daily long term.  My suggestion to "Guest" is to reduce to the min. level that is not detrimental to daily living, and speak to your Doctor re the stomach ulcers and bone thinning for remedys.   Good Luck.

5

My daughter is a patient of autoimmune optic neuritis (MOG positive).She has been diagnosed with this condition for the last 4 years.She is on immunosupressant (initially Mycophenolate & now on Rituximab + prednisone).Every time prednisone was tapered she had relapse of her condition.

It seems that she will have to take prednisone for many years/lifetime unless any new medication is invented or discovered for her specific condition.

She is 27 yrs old & needs lot of encouragement due to thought of long term prednisone use itself is very unpleasant to her.

I request all to let me know of successful stories & how to prevent side effects.

I am  a health professional & know about steroids in general.I am particularly interested in individual stories