Should I continue to take Steroids.

[Btte]

I was prescribed 25mgms Prednisolone daily on the 20th Dec. Following recurrence of lung lesion, this really improved the cough and general well being so I enjoyed Christmas. It's been recommended that I stay on this dose until I see Radiologist with a decision to make about radiotherapy . I am no longer feeling as good generally and because I have osteoporosis and Crohn's disease I feel I should not continue long term.Any help from other long term users of Prednisolone would be helpful in making a decision.

[Hidden]

Maybe the steroids will also be helping with the crohns, I would suggest you speak to your doctor before stopping them, I think you have to reduce the dose slowly. I know its not helping the osteoporosis but if it keeps you well for now, maybe it is wrong to come off them.

[Lily-Anne]

I take steroids and have done since February. Trying to come off them actually resulted in my becoming quite unwell. I’m now on a much lower dose and gradually reducing them again. I definitely advise caution and a chat with your doctor before making any decisions. My sister is taking the same steroid as you for a condition , can’t remember the name but it’s behind the eye and risks blindness. She tried to come down from 80mg a day and it was an error. She is now much lower but under a carefully monitored management

LA xx

[Lyndy]

Hi Btte

Steroids and withdrawal from them is a subject close to my heart! The dose you are on is high but as others have said, you must talk to your team before coming off them. In my experience the really high doses can stabilise disease (I have them for rheumatoid) and then it should be possible to drop down slowly until you find a level you are comfortable with.

I have been on 7/8 mg pd for years (having been up to 20 mg) and it isn’t good for you! No one explained that this effectively shuts down natural production of cortisol. As a result I am reducing but it takes about 3 months to drop 1 mg as I must do it so slowly.

Good luck with it! xx

[Neona]

I was on prednisolone for 3 years starting with 15 mg and tapering. This was fir polymyalgia at the time although it turned out that I had cancer. I took alendronic acid until I got down to 7 mg. My recent scan has shown a collapsed end plate in thoracic vertebrae T9. I have asked for a dexa scan to see if I have osteoporosis. I remember that my surgeon was not pleased that I was on steroids when I had my op. It is definately better to be off steroids if possible but you will need to taper off slowly and will have to weigh up the benefits against the risks. I am 59.

[Lindaura]

All of the above advice is absolutely accurate.

I too was on mega-doses of Prednisone which had saved my life when I was a teenager. I swelled up like a balloon, which was awful for my self image, grew hair in places it should not grow, lived on a special anti acid called Mylanta, but I was saved!

9 months later, I was tapered off the steroids. This took almost 3 months later, but even though I had been warned, when I was finally off, the very next day, I found myself in the blackest depression I could never have imagined. Fortunately, after about an hour of darkness, I began to remember that the doctor had warned me that this could happen and that I shoukd have had a care giver with me. Instead, I was alone in the lighting booth of a theatre production at my college!

What I was not warned about was the two years it took my adrenal glands to recover. I spent the nest two years fainting or going into shock when under the slightest physical stress, which could be anything from making love to a sharp change in the weather.

I finally went back to my consultant after a particularly annoying fainting spell at a rock concert and she explained about the long recovery needed for your own glands to function without the outside steroids. And I had only been on for a year!

Whew!

Hugs,

Laura