Steroids and moon face

Hi

I can totally understand how your sister might feel embarrassed about going out. Has she already spoken to her CNS about this to see if there's anything further they can do to help? Alternatively you could post your question in ask a nurse and one of the cancer nurse specialists will aim to respond within 2 working days.

You could also show your sister this information about cancer and body image that Macmillan have produced as there may be some information that she finds helpful.

x

I also have swelling due to steroid use and understand how distressing it is. people say how well I look but its nnot true and can be very uncomfortable, but I have to remember that the steroid do help.

Thank you I'll pass that information on x

I'm sorry you're going through it :( does it make it worse when people brush it off and say you look great? It's difficult to know what is the right and wrong thing to say. X

Hi Kaf

I had Steroids for a few months after the radioferry and I looked like a monster. Fortunately as soon you stop taking them it goes back normal. I have taken normal steroids have also taken for them something like 20 years for asthma, I think I look good. Don't worry you will get used to them. 

This thread is being marked for retention by the moderator, as some members are still finding this useful.

I did not know dexamethosone causes notable swelling on the patients. Good to know, thank you for this.  When do we start noticing this? My family member just started this steroid 2 days ago. 

Hi Sparkles123 ,

My name is Syed and I’m a member of the Community team here at Macmillan. Whatever your circumstances may be, we will try our best to support you. I hope you can find the Community to be a place of kindness, comfort and positivity.

In relation to this post, we would always suggest getting in touch with your family member’s GP or medical team first as they are able to provide them with the most relevant medical information relating to their case. Please note, we do not have access to medical records at Macmillan.

On the Community, we have our Ask a Nurse section available. Here, you can ask our team of nurses certain questions you may have around diagnosis, medication and treatment. They aim to respond within 1-3 working days on the site.

You are always welcome to call our Support Line on 0808 808 00 00 or alternatively, click here for webchat and request the Nurses from our wide range of experts. We are available 8am until 8pm, 7 days a week.

If there is anything else me or my team can do, please don’t hesitate to get in touch with us via Private Message or on community@macmillan.org.uk and we’ll try our best to support you. Please keep in mind, the Community is available 24 hours a day, 7 days a week.

Hi,

This has happened to me at the moment too so I completely understand.

I've been gradually reducing same steroids from 12g a day now down to 2mg. Been advised takes 4days for changes to take affect. I'm hoping my little round puffy face will be more normal and that other side effects (sleep) will improve.

Obviously I hate how my face currently looks but for me I've still went out. I might not like it but it's my reality at the moment and I'm trying to still enjoy quality time for meals and stuff with family and continue with what quality of life I can have.

I did wonder though if at this stage in life it was time to learn a little contouring or just wait for lower dose to take effect.

The thing whith your sister though is that this is impacting her quality of life and for that I would seek advice from consultant re medication or macmillan nurses from a beauty perspective (they may have good advice).

I hope she overcomes it. How we look can be so powerful to how we feel.

I really feel for your sister. I, too, had puffy face and body while I was on dexamethasone. I was embarrassed about how I looked, and only wanted my immediate family to see me. 

When I finished Radiotherapy and my first chemotherapy, everyone wanted to see me 'ring the bell'. They took pictures and videos of me doing this. I hated seeing those pictures because they didn't look like me. My hair was falling out from the radiation, too! I also had Hydrocephalus in my forehead which, I had to have a shunt implanted to remove.

I got angry when people would tell me that I looked 'fine' and that I should remember it was caused by what I've been through. Of course I knew that! I just didn't want to look like the marshmallow man!

Finally, my oncologist allowed me to go off the dexamethasone on the promise that I'd go back on it at his request. I never had to take them again, and the puffy face and body went back to my new normal.