Steroids high dose for ILD

[GingerCatJayne]

I have started my 30mg daily for 6 weeks and then to taper. I have diabetes which will complicate things. Just want to know others experiences of steroids and reducing dose - I have heard steroids can be notoriously difficult to get off.

Just would like to hear others' stories.

Thanks x

[mrsmummy]

Six weeks and taper is what many on here are familiar with. I think most problems occur when the steroids are stopped abruptly. I never had a problem coming off them gradually.

[GingerCatJayne in reply to mrsmummy]

Thanks, mrsmummy, are you off them completely now? I have to say that it is planning havoc with my diabetes. xx

[mrsmummy in reply to GingerCatJayne]

I only take them when absolutely necessary and thankfully that is not often.

[Caspiana]

Hello GingerCatJayne . If you are working with you medical team when tapering off steroids I think you will be able to do it. It's not done suddenly and that gives your body time to adjust. I've tapered off of sleeping pills and pain medication both of which I had been on for three years. There were some difficult days but I managed.

Please don't worry too much. Cross that bridge when you come to it. Do let us know how you go.

Take good care.

Cas xx 🌸

[GingerCatJayne in reply to Caspiana]

Hi, Caspiana,

Thank you for your kind words. I resisted for ages because my diabetes was not controlled. But when I went to the opticians to have my diabetic retinopathy, my husband was so shocked because I couldn't walk/breathe - it was a turning point for me. I think this ILD has been building for some time now and I have only 61% of my lungs working. And the list goes on - I have a bleed in my eye so need to go to eye specialist.!!! xx

[Plumbob]

Hi Jayne I was on high doses of steroids for over 2 years but had no problem coming off them very slowly and as think a lot of people on here will have been on the 6 week 30mg programme and not had any major issues coming off them

Take Care

Plumbob

[GingerCatJayne in reply to Plumbob]

Hi Plumbob,

Were you prescribed them for ILD?

How are you now?

Love the flower by the way!

Thanks, xx

[Plumbob in reply to GingerCatJayne]

Jayne - I have asbestosis which comes under the ILD umbrella as a fibrosis condition - the steroids did what they needed to do but I put on a bit of weight which came off when I stopped using them.

Unfortunately my illness is terminal and at one point they didn't expect me to be here today but I am a stubborn S.O.B. So i'm living each day as it comes my next milestone to reach is my Birthday in August. But it's one step at a time.

I am not sad or worried about my condition as I don't do stress its a waste of good energy -I always stay positive

Take care and keep sucking it in 😉

Owen

[Babyjim in reply to Plumbob]

Great post. All of us with pf are terminal. I feel like I'm slipping fast. Get depressed late in the day.let's hang on.

[GingerCatJayne in reply to Plumbob]

Will do Plumbob, you too xx

[Katie2905]

Hello Ginger, Is ILD Interstitial Lung Disease, Pulmonary Fibrosis? I have difficulty with initials which could be other meanings. Also do you have an autoimmune disorder?

Thank you!

Katie

[Tree20862]

I was on steroids for 6 months, various doses. Ultimately I was weaned off, very slowly. I had been sick enough that my endurance was low but I slowly improved. It took 6 weeks for me to get rid of the prednisone munchies. I was successfully off steroids for 5.5 months. Then fall allergies put me on a 12 day course. Then I was off from October 2017 until Monday. I'm hopeful for just a 12 day course.

[Tree20862]

Watch your sugars carefully!