Prednisolone...... advice pleasee

Hi

I have been on these steroids for over a year now I started on 40 mg for the first 5 months then was weaned off slowly however I dropped to low to quick and then went back up I'm currently back on 15 mg a day.

After 2 months of starting them my face and body bloated, my mood really changed I became very temperamental, my appetite became bigger and I was very tired all the time. After 8 months my hair started to fall out and become thinner however no bald patches. But they reduced the swelling in my spleen liver lungs. They have done what the were supposed to do and I'm very grateful for that because they were my last resort.

Every person reacts differently so you might not get any of the side effects I did, or maybe only one or two. It's only if your on them as a high dose and for long time.

What mg are you starting on?

Don't worry or be stressed about it, think positive that they are going to help you and the sarcoid. I'm back in hospital tomorrow, I am awaiting an mri to but I'm just trying to take it in my stride because trust me stress is not a good thing.

Hi katld,

I was very concerned before I began the steroids too, the medication is strong and it does have side affects. However, I found that I got used to some of the side affects (although not all) and the improvement to my health, by slowing and then stopping the Sarcoidosis, made the risks and side affects justifiable.

I remember not being able to sleep when I began the steroids, I think I may have taken something to help me sleep sometimes in the beginning, and eventually my body adjusted.

It sounds as though your course will be reasonably short (a month or two...?) this may mean you don't have enough time to adjust - but then you'll be done, which will hopefully be better!

Doing as much reading as you can online, to learn about the disease, so you can be as proactive as possible in making these decisions With your Dr. helps to ease anxiety.

Best of luck to you x x

Hi there,

I have been on steroids since March this year. I started on 30mgs and it reduced over time. I have come down to 5mgs but I'm on a higher dose at the mo as I have bronchitis for 5 days but will go back down again.

Side effects are different for everyone. Myself the weight gain didn't start until I was taking them for four months. My mood and temperament have been affected quite badly. I can be fine and then its like a switch goes off and I'm like a demon. Its scary sometimes. My sleep pattern wasn't really affected.

They have helped and I only have it in my lungs. I wish you luck and hope you make a speedy recovery.

Regards,

Polly.

HI Katld, I know there are so many worries about taking steroids, but they worked for me. I was unable to walk a few steps without coughing and breathlessness, felt tired all the time. Was prescribed 30mgs daily for 1 year, ok I put on weight, but that was easy to lose when I stopped the steroids. I can now walk, swim, yes even breathe and talk at the same time! So trust your doctor they have the experience.

Steroids are your best & only hope for Sarcoidosis. I was on the 7 day pack, then 20mg for a week now down to 10 until they take me off. 

So do yiu guys take steroids all the time? Or just when you get flare ups? Basically my doctor said i take them or risk permanent scarring to my lungs which would have a bigger effect later on. So ibe taken them and tbh it hasnt been to bad yet felt abit sick and everywhere is achey and felt a little bit strange but nothing that hasnt been very easily managed ive still worked ect ect even though i dod have 1 day off due to feeling like i had vertigo but that subsided very quickly x