Prednisolone and moon face

[thislittlebird]

I had to take this for a couple of months in spring 2021 but unlike most people my moon face never seemed to go away completely. Did anyone here have to take this and struggled to get rid of the moon face? Did losing weight generally help? I’ve lost a chunk of the extra moon face fat but the last bit doesn’t want to shift and it’s really impacting my self esteem. I’m hoping losing some weight (which I do need to do) will help.

Daughter is on it at the moment - she's swerved most of the symptoms thankfully except the insomnia, which is a real pain in the arse. Nothing helps her sleep, it's awful! She's exhausted, but her mind is racing :-(

Also, due to her being up until all hours, combined with her 9mo baby sister playing silly buggers at night (despite sleeping through for four months!) I have got a cracking case of the moon face/pisshole in the snow eyes. Sympathy symptoms?

I'm so sorry it must feel so hard to stay positive and keep going when it feels like you have been dealt such a tough hand.

And it's really unfair and horrible knowing that stress is impacting your body more at a time when it's impossible not to me stressed.

My condition isnt fun but I feel lucky to finally have a diagnosis after many years of battling and thinking I was going mad because every time I went to GP for a blood test they were "normal" .

I’m currently taking Prednisolone, a tapering dose over 8 weeks. I also took it previously for about 2 years. I have an auto immune condition similar to RA, and if they need to switch my drugs or I’m having a bad flare, I usually need some bridging Prednisolone to keep me functioning. I don’t know why some people get moon face and some don’t. I never seem to get it. However I definitely have the insomnia and I’m really worried about my bones. I wish I could take it forever with no side effects because it’s an amazing drug in many ways. I literally would not be able to function if I wasn’t taking it right now.

I had to take prednisolone for 3 out of six IVF cycles. The last one which was successful I was on it for months and months. I didn't just have moon face, I had moon body. But yes, eventually, not quickly, I lost the weight on my face but good lord I hated it. I looked like drop dead Fred when he trapped his head in the fridge. I hated all the side effects of pred' but it did its job.

@Rockingcloggs oh god, moon body sounds even worse! I’m glad to hear you had success though! The only time I’ve had any (brief) ‘success’ was with a chemical and that was on pred. I’m worried it’s the missing link as such, I need to order some immune tests but I know they’ll try to put me on high-ish doses and wondering if I can ask them to lower it a bit because I get such a fat face on it. Do you remember what dose you were on? I assume you were on it until 12 weeks.

@Chesneyhawkes1 Beige diet is fair under the circumstances but 9kg on the face does sound pretty shit 😂

@thislittlebird I went for lower dose (20 instead of 40) because I was worried about the side effects, and it hasn't really worked (hence switching to mycophenolate but that takes a long time to start working). It might not have worked anyway at 40 to be fair, as it doesn't always with Myasthenia. It's such a hard decision when the side effects are hard to take.

@TheMousePipes 9 years, wow! Glad your moon went away and good to hear you’re in remission.

@Rugbyfield 60mg is high, hopefully it helped him, it’s a funny old drug on higher doses.

@HeyBearILoveYou interesting, I never had that issue from what I recall. Did get shaky hands on the higher dose. Is hers high? Sympathy symptoms doesn’t sound fun!

@Doublevodka yeah, agreed about how great it can be. When I’m taking a lower dose of it without symptoms I feel great because I’m no longer itchy and allergic, as I have been all my life, but the side effects are frustrating. Wish I could swerve the old moon 🌚

Honestly it’s the absolute worst, I’m so exhausted and tired of the lack of help mentally, physically (investigations) and how you’re just told there’s nothing wrong or can’t get help at all. It’s been a long old slog.

I’m stressy and highly strung anyway, and this feels like the worst outcome for me, constant worry and stress about infertility and I’m sure it’s impacting my immune issues.

Sounds like you’ve have a rough time with your diagnosis too. Did you find a doctor who ran different tests or something else?

Yeah, I know. I’m scared of being on high doses for a long time but I do know lower ones seem to get my eczema to calm down, so that’s something.

@thislittlebird yes it's so impossible when you have a condition that stress makes worse but then the condition itself is stressful. Hard to know how to unpick it. And that feeling of ending up being stressed about being stressed.

I was finally diagnosed when an optician spotted my ptosis (eyelid droop) during a routine check up and asked my GP to investigate for myasthenia. I had never even heard of it so was a bit of a shock but also a relief to know there were medications I could try.

Yes I tapered down slowly. The last 3mg were ridiculously hard to stop.
Before the pred I had cancer treatment and dexamethasone. That's like prednisolone's badass big brother🤣. No sleep and the appetite of an elephant.

Anyone taking long term pred or topical steroids, check symptoms for Cushing’s? I used steroid creams for a long time, ended up in a bit of a mess with it.

So sorry to hear of everyone’s side effects of moon face with prednisone. I don’t want to bore you all with the details but I’ve been really ill with something (in all likelihood Covid) since beginning of December that, as al ways happens with me, turned in to a bacterial chest infection. I’ve been in for oxygen a few times - exacerbates my asthma which is bad at the best of times - but one of the things I was prescribed to get a handle on it, was prednisone. And I’m definitely on the mend but after only a few weeks on it, and bearing in mind I was so ill I was barely eating, I have put on 12 pounds. I am so unhappy about it though I appreciate I needed the steroids to survive in all probability. I think, like a lot of people have anecdotally reported, my asthma has been worsened overall as a result and I have an appointment with a respiratory consultant next week. I really hope that they do not suggest I take steroids long term alongside my other asthma meds. Because I really think that the answer will be no tbh.

@Yddraigoldragon I thought cushings was what caused the moon face was?
Another beware. If you are ill, really ill with infection make sure to increase your dose. Google " sick day steroids".
I didn't know and ended up in hospital with covid. It's possible that increasing my dose might have made a difference though I'll never know for sure.

@snowsilver it’s the moon face plus a load of other issues. Diabetes, high BP, hair loss on head and additional hair on face, bruising, thin skin. Reduced healing ability and lack of resistance to infections etc etc.
i belong to a fb group, there was some info about the lack of immune response and the other complications making Covid more dangerous and also lots of info about sick day rules.

@snowsilver that's the beast I had!! God I hated those things!

Hey @SweetSakura of course! For me it was the quickest option (6mnths) and it is the only drug that has allowed me to reduce steroids. The side effects were some water retention and belly cramps which have mostly disappeared. Good luck with it, I remember it all being a big decision and quite terrifying.

@SweetSakura I've just re-read. We have the same condition. I don't suppose you're on Facebook but join the Myaware groups if you haven't already. I found it helpful plus Myaware themselves have excellent meetings etc (online) which I wish I had gone too at the beginning of it all but the pandemic took over not long after my diagnosis!

@Yddraigoldragon excellent point. I had Cushing's. Dreadful.

@thislittlebird sorry for the sidetrack. It is horrible when something to help changes your appearance. I can't look at photos of the last couple of years. I hope it does go eventually too but I am realistic that this is my 'new shape' so will just have to roll with it.

@Titsolina yes am on the myaware Facebook group and I did go to an online meeting early on. They are a really great charity I think, the information pack they sent was great