Steroid side effects

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I’m on long term steroids - 2mg of dexamethasone a day - for brain mets, and have all sorts of minor symptoms which I think are side effects.I’d really like some feed back from others on similar medication to find out whether these are ‘normal’ or just me. I’m not on oestrogen suppressants or any other medication, just herceptin every 3 weeks to control my breast lumps.

Over tiredness - I just keep going back to bed and sleeping. Every flurry of activity (eg a bit of gardening) is followed by a collapse into bed or the legs start to give way (see below).
Moon face - all very swollen and a tendency for one cheek or the other to turn bright red for no reason.
Bloating - my appetite is very good (ie. I’m always hungry) and am piling on the pounds around my middle, which is particularly unattractive with no breasts.
Hair very slow to grow back after brain radiation ie. no sign of hair regrowth 2 months later.
Drunken legs - still very weak leg muscles, although nothing like they were when I was initially diagnosed & on 32mg a day and couldn’t even get out of a chair without help. I walk with a stick to help my balance, but every so often it feels like the floor has suddenly become a steep hill or tilted to one side.
Grumbling guts - I’ve been on omeprazole for a couple of years now since my stomach was damaged by FEC and then taxotere, but the steroids seem to be making it worse.
Damaged skin - very dry skin, including nose bleeds, but naseptin cream is helping with the nose and aquadrate is very good for cracked feet.
Numb hand - the right side of my right hand feels very numb (like I’ve hit my funny bone) and my fingertips are generally lacking in sensitivity and strength. My GP says that this is due to a trapped nerve in my elbow due to losing a stone in weight when I first became ill in February. But I’ve now put all that weight back on, and the hand is no better.

I think that’s about it for the moment, although I’m sure I’ll think of others later. Amazingly, I don’t have any pain (just the occasional stomach ache), and am generally fit & well.

If anyone has similar, or different, side effects I’d like to hear about them.

Love,
Lynn

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Hi Lynn,
I am on 40mg of Omeprazole for acid reflux which is a side effect of the steroids.I had an excruciating pain in my chest one day and ended up in A+E on morphine because the pain was so bad!
Alli x

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Hi Lynn
I recently completed radio therapy to brain and left rib. I have been on dexamethasone since March and have all the symptoms you describe, apart from numb right
hand. The bloatedness and weak legs is the worse but i have gradually been able to drop from 16mg done to 2mg so i am hoping that things will start to improve. iI tell myself i can do that ,no problem , then have to give in and accept it is still early days.

I hope this helps to know there are others with the same side effects. They have told me it could be months before my hair grows back so for now i have lots of scarves and a wig which i have only worn once so far.

love jenny xxx

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Thanks Jenny - I shall look forward to the eventual return of my hair. Meanwhile it’s scarves and hats because I can’t stand wigs. I’ve always found them to be very itchy and I’d prefer people to think I’m bald than think I’m infested - all that scratching!
It really does help to know that others have the same side effects.
Love, Lynn

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moonface, heartburn and bloating/eating lots are for sure from my experience - have not had the others though. Could any of them be herceptin as they sound ‘chemo-y’? Try lansoprazole instead perhaps for stomach. That worked for me?

hope helps
susie

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i have the majority of your sside effects esspecially the wobbly legs - hate that as i have to use a wheelchair and stair lift - i put it down to 2 weeks total bed rest when 1sr diagnosised. the moonface is huge but last week saw the onc and as i’m not having major probs with the chemo he said not to have any steroids as weekly taxol. tried this week without any and i am knackered for 3 days but the face is goin g down great so i think i’ll have to perservere with it. my skin is also very dry - i thought i could be dehydrated as my taste buds are so bad.numb hand and numb lips are also listed by me