Steroids

[Thanksnhs]

Hi fellow hearties, I was just wondering if anyone is on steroids? and if so how are you coping with the "moon face" I am struggling with it at the moment, I definitely preferred the old skinny malinky wrinkled one, I look like a cross between a hamster and someone that has swallowed two golf balls, big jowely square chin 😭I would need a trout pout to see my lips, def not imaging it I met an old friend and the first thing she said I can see you are on steroids, at least she was honest, it's like the elephant in the room with the family, I hate going out for a walk, between that and not having a haircut or a colour for seven months, I have frizzy curly hair, I will need to invest in a balaclava, I would be grateful for any thoughts on it, I will be on them for the foreseeable future, but hopefully they can cut the dose at some point char ❤️x

[laura_dropstitch Heart Star]

Not been on steroids myself, but I can picture exactly what you mean by the steroid face. So hard, especially at the moment when it's not as easy to make yourself feel good via haircuts etc. Doesn't help you any to hear this probably, but I'm so happy to hear from this post that you are already seeing friends and family and wanting to take care of your appearance. How amazing is that?! Really hope side effects like this can be managed in the longer term for you. In the meantime, go you! And a big hug x

[Thanksnhs in reply to laura_dropstitch]

Thanks hair is a total disaster my hairdresser will need a hedge trimmer to get through it 🤣 I am waiting till I get my licence back before I go, which hopefully will be in the next few weeks, just waiting for my sternum to heal and get the go ahead from the jubilee, she is going to open early for me, which is lovely, the side effects of everything just now are awful till they get adjusted in particular the immunosuppressant and of course the steroids, I feel so ungrateful moaning about them after being so lucky to get a transplant and of course my thoughts are forever with the donor's family, I am sure things will settle down and this is just a wobble, thanks again Laura it's good to hear your PhD is going well, although I will admit I don't really understand it all, take care I hope you are keeping well yourself and we will all be able to get out and about properly again after covid ❤️char x

[Hidden]

I took them for about 5 months for inflammatory arthritis (max dose of 15mg daily) and also quite quickly began developing the good ol’ lunar look. I was fairly self-conscious of it, particularly as the other meds they started me on at the same time exponentially sped up my male pattern baldness, which had been a sensitive point on its own to begin with. I went from being short, but not hideous and with an almost full head of hair, to still short, looking like that bloke they always use as an example of gurning, and half bald. The only good thing I can say is my face shape did gradually settle back to less hideous once finally able to get off the pred. All joking aside, the way I dealt with it was to essentially stop properly looking in the mirror, only focusing on specific parts of my face as required to wash or shave, rather than my face as a whole, and frequently remind myself that at least I was functioning where without them I could barely get out of my chair and was completely unable to cut up my own food at the ripe old age of 36. Short term pain for longer term gain. My 12 yo has a lung condition, and she routinely takes 40mg with severe exacerbations, usually for fairly short periods of 5 to 10 days, but did once do a 4 week stint at 40 and then a 6 week taper to come off, and her moon face - which had been much more prominent than mine - also reverted once off the steroids for a bit. I seem to recall reading that dosages of 10mg or less are the point at which it begins to resolve, and it usually disappears completely within a month of stopping.

[Thanksnhs in reply to Hidden]

Hi that made me smile thinking about the gurner 😅I am now waiting for the moustache to grow, oh dear, strange how men can lose hair and women can grow it!, I will take your advice, stop staring at my missing chin and sad Sam mouth, and try and focus on the day they start reducing the dosage, I think with the side effects from all the immunosuppressant meds it just feels like one thing after another, at the moment, I am extremely grateful for all the care I am receiving it's just some days are much harder than others, I hope you feel better now and your daughter is well take care char

[Hidden in reply to Thanksnhs]

Glad I made you smile at least! 😁 I would swap you the ‘tache in a heartbeat, as that’s another area where I’ve always been follicularly challenged, but alas, then you would be stuck with the wonderful acne my own (comparatively mild) immunosuppression gifts me with.

I’ve received a number of ‘helpful’, well meaning comments over the years of both mine and the small person’s various, occasionally serious, often infuriating medical adventures, and one that riled me the wrong way no end at the time, but was a bit easier to bear once we were out of the mire and I could reflect on it properly, was being told ‘side effects mean [you’re] still here’. I shall leave that one dangling in the wind, but I know you of all people don’t need to be told that, and feel it’s important to point out that being grateful to still be here doesn’t preclude or prohibit feeling like some bits are naff, because, guess what? They are! Take care, chick.

[Thanksnhs in reply to Hidden]

Thanks again, baby steps to the future when covid Is gone and we are able to get out and enjoy life with friends and family, I am also looking forward to having my first glass of chilled wine, that might take my mind off the face hehe char

[Hidden in reply to Hidden]

Hi Charlie, I was interested in your comments regarding inflammatory arthritis. I'm a AF sufferer and had a 6 day attack just over a month ago, since coming home my joints started shutting down. My doctor narrowed things down to I think you have this, but you don't have all the symptoms, but.....

So she has put me on steroids, which has unlocked my joints so I can move about. Gone from 30mg to 20mg with some stiffness and pain still. The diagnosis is Polymyalgia Rhumatica? Possibly? Still don't know why this happened to me or how long it will last. Must say my Docs been brill.

Got the hair loss bit but not massive moon face, have been told I look OK, not being good looking to start with, I take as a compliment.

Wishing you well...

[Ads568]

Hi Thanksnhs,

Happy organ donation week!

Yeah, I totally get your moon face woes! I think it feels worse to us because we’d got used to our ‘on death’s door’ skinny malinky look ;-D My eyes were so swollen I looked like Miss Piggy!

Mine is much much better now, but I’m on 5mg of pred permanently, so still a bit rounder than before - not just on my face!

Your & Charlie_G’s hair comments made me chuckle - I’m the same, although my hair is fine, so just getting more & more straggly! And I have no hair at all on my arms or legs since my transplant, but more than normal on my top lip - work that one out! But whatever happens, I’m very grateful & just remind myself I’d look so much worse 6 ft under, which is where I so nearly ended up!!

Best wishes; keep up the good work & good spirits.

[Thanksnhs in reply to Ads568]

Hi and thanks, its nice not to here everyone feels the same about and the comments have made me smile, I am seven weeks today post transplant so the meds are still in high dosage, hoping once they get them adjusted I will be a bit better, it is just so strange to see a chubby red face rather than a skinny grey wrinkled one, mabe I will get used to it, as you say without any donar, there family and the wonderful NHS I wouldn't be hear to moan about it ❤️❤️happy organ donation week, I hope your recovery has been good char

[Thanksnhs in reply to Ads568]

🙄🙄It's nice to here everyone feels the same

[Thanksnhs]

Hi and thanks for your reply, that was a really high dose, I am having sleep problems which are awful, and strange involuntary movements in my arms and legs, I punched my face in the middle of the night, not sure if that's the steroids or one of the other drugs, so many it's hard to tell, I heard the withdrawal symptoms can be bad, I hope they disappear eventually, take care char

[BongoBanana]

Last November I was put on 60mg prednisolone - diagnosed with Cardiac Sarcoidosis. I ballooned - moon face and a spare tyre developed overnight and I also started to get buffalo neck. However, as the dose reduced so did the moon face and buffalo neck. I still have a huge "pregnant" tummy ( and I am 61!) but that is better than having a moon face. Now on 6mg for forseeable future and battling with weight - but they have done the trick and knocked the sarcoidosis into submission for now! None of this is fun but we need to stay positive - it is how you feel inside that counts.

[Gordonkn]

I've been on steroids some time ago and didn't notice any change in my appearance (besides muscles obviously)

[Curryandchips]

I was on Prednisolone 40mg for Gout. My head blew up like a basketball. Took me ages to wean myself of it but my head went back to normal pretty quick.