Steroids - struggling with side effects (fatigue, balance, sleep problems, depression)

Hi Devon Jan and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hello Devon Jan.

I’m sorry you’ve been having problems with steroids.  You may be on a much higher dose than me.

I have had chemo and radiotherapy for the last year for lung cancer (which has spread). Currently awaiting scan results.  I had steroids at the start of each chemo session, as per usual practice.  During my chemo maintenance therapy I was very fatigued - I was in bed for several days near the beginning of each infusion treatment. I’ve met others who were hardly affected!  I was given a supply of steroids to take (but warned not to take them too often) when I needed more energy.  But I didn’t take them because I couldn’t sleep at night.  

After the more recent radiotherapy I caught radiation pneumonitis (inflammation of the lung) which made me even more fatigued so I was advised to take steroids again, which I did.  I had to get some sleeping pills to counteract the steroids.  Almost every afternoon I sleep for an hour, no problem but still need help getting to sleep at night.

my oncologist is away at present, but plan to speak to her soon about taking low dose steroids and sleeping tablets on an ongoing basis, it works for me.  I’ve been doing that for over a month. When I have tried to cut out the steroids, the fatigue hits me again.  But I think I shall be able to cut them out again soon as the effect of the radiotherapy wears off slowly.

I stopped chemo in November last year and my appetite has returned.  The steroids make me hungry which is good cos I lost 2 stone during chemo.

Steroids definitely affect your mood.  I vary from (occasionally) being overly chirpy to feeling flat.  I’m not sure if my balance has been affected, if so, only marginally, and that may be because I have lost a lot of muscle tissue and am unable to exercise as much as I would like (the cancer has spread to my femur so I had a hip replacement).

My hospital runs a walking session for men with cancer which enables me to compare notes with other patients. Always helpful if you can do something similar.

No doubt you will be having a discussion with your oncologist or MacMillan nurses.

I do hope you find the right solution.

very best wishes

JonnyB

Good morning Jonny, thank you for the reply, it's a rollercoaster for us, I also thought all steroids was same but apparently not, when I was having chemo those steroids I had was brilliant, was on gh most time and work I got done lol, but these are totally different, but pleased to say I'm reducing them again by 5mg ,I've also saw a liver Dr this week and had blood's taken waiting for scan, b feeling more happier as he will find out what's wrong with my liver and hopefully he going to change steroids for something else if I need pills. Unfortunately are hospital don't have a walk in buthere are places you can go to chat to someone, but you need to make appointments, but have phoned McMillan before they are brilliant  Also like you my moods are not good another problem as im a happy go lucky person, and to be miserable snappy is definitely not me, just feel sorry for my wonderful son who stops with me if I need him,.January my CT scan showed tumour as gone, so I'm so so lucky treatments I've had done it's job, I'm bit worried as got 3 months ct scan 3rd May then seeing my cancer Dr on 20th, it's again waiting but hopefully it's good news. Good luck to you and your treatments am here if you need to chat. Jan