Question for long term oral steroid users

[ihatesteroids]

How long has it been that you have been taking oral steroids ? Please share your experience and any adverse effects experienced.

[PMRPete]

About 40 years!

[SpireAnt]

About 40 years here too. Although on and off for the first 10 years, and permanently for the past 30. I've had cataract operations, I have thin skin that bruises very easily, and I'm being checked for osteoporosis next year. I can't complain as I believe they've kept me reasonably healthy and kept me out of hospital a few times.

[emmasue]

I have been taking steroids off and on for about 30+ years. I have been on a maintenance dose for about 3 years. It was 5mg which was increased during exacerbations. They've just upped it to 10mg after my last hospital admission. When I was in hospital, my eye sight went funny. They thought it was steroids, but turned out it was just the Ipratropium nebuliser. But, I did find out that steroids can cause cataracts. The optician said that steroid cataracts tend to develop 10 years earlier than normal ones, so about in your 50's instead of 60's.

I knew about the bone loss and am on ad-cal. I am having a bone scan in a couple weeks to see how I am doing. I didn't know about the diabetes or the Cushing's syndrome. I have gained weight and I struggle with diets. I hate the moon face. I also have had bouts of depression and anxiety that I have attributed to the steroids. There's also the sleeplessness that has come in.

I have finally got a referral to an asthma specialist. Will see if I can ever come off of them.

[Catsncrochet]

11 years, on and off. I have osteoporosis. I also seem to get other infections when on steroids - UTIs, cold sores.

[EmmaF91 Community Ambassador]

2017 officially went on maintenance but basically been on since 2015 (on, a few days off, back on again)

I bruise easily, occasionally get 1 blurry eye, having my 2nd DEXA end of the month but hopefully not too much density loss, weight gain, mood swings and tiredness (esp at higher dose). Luckily managed to avoid the moon face (and tho have the cortisol hump)

[ihatesteroids]

Encouraged to know that people can take these things and survive for decades.

[SARAHBOURNEMOUTH]

I have been on Prednisole 40mgs for 12 weeks. Partial response. And Forstair 200/6