Prednisone - Will it def give me 'moon face'?

Hi. This is my first post, so forgive me if this is a stupid question!

I am a 42 yr old female with a platelet count around 30. My haematologist is convinced it is ITP.

He is going to give me steroids for 3 mths. I knew about the anger, sleeping and eating side effects but have just come across the 'moon face' side effect which has scared the **** out of me. I am already big and the thought of becoming hideously disfigured due to the drugs is just too much. Plus people seem to be saying they get acne and excess body and facial hair.

If this is what's going to happen to me I think I'd rather just have the low platelets as the only symptoms I have from that are fatigue and a few red spots!

I would really like some advice please!!!

Caroline:

You didn't say what dose you are starting with. That can make a difference. If it's around 60 and you stay on that dose for a few weeks, then you may get the moon face. With a lower starting dose, you may not.

I had a slight moon face which seemed huge to me, but other people didn't notice much. I did not get acne or facial hair.

At 30, you don't really have to treat unless you have symptoms....it's a judgment call. Also, steroids should be tapered based on response and a length of time can't really be predicted ahead of time. Some people respond very well and only need a few weeks of treatment and some don't respond well at all and end up on them for six months.

I'm admittedly vain and I thought the moon face was the least problematic of the steroid-induced side effects.

Hi Sandi,

Thanks very much for your response.

I don't know what dosage he is intending to give me yet as I still have to see an ENT consultant about some enlarged lymph nodes, but he has referred to a 'big slug of steroids' a couple of times. I had a CT scan which showed I had enlarged lymph nodes but apparently they are just under the size where I should be worried and they haven't got any bigger in the last couple of months since I first noticed them. I've also had a bone marrow biopsy which wasn't successful, so it's all rather frustrating. I just want to know one way or the other what's going on. All my other blood tests are fine.

I have read that a count of 30 is borderline for treatment so I am torn whether or not to take steroids, but the fatigue is really getting to me and I have a very demanding and stressful job. So I really want to start feeling better.

PS: This website and forum is great - I've found out so much (including some things I would rather not have!!).

You're scared and that is very understanable. I don't know how 'big' you are but I have had steroids on and off throughout my ITP journey since 1994 and most times yes I get a 'moon-face'. I can only say how I experience.

It just made my face a little rounder. Most people would think I might have put half a stone on I guess? Or more to the point, don't think it in relation to the steroids but after stopping the steroids probably think I have lost weight when my face returns back to me....

My own experience is that it just looks a little plumper. I don't know what you look like but I bet you are not as bad as you paint the picture on here because most people see themselves different to how others see them.

But in direct answer, no specific side effect is guarenteed on any of us. This year was the only time I felt sick on them and that was back in January. I been on them most of this year this time. Sometimes they help me get up that bit earlier but sunny days do that too so in combination to steroids yeh I can feel a bit on the high side but having experience a tiny bout of lathergy - of which I been quite sneery at on here in the past I will admit, I think on the high side is better. Am not very high. Just compared to that week I dragged myself everywhere - literally just the comparison.

You wont definately experience any specific side effect. You might breeze through without anything if you are lucky. You might expereince some if unlucky but nothing is guaranteed.

By the way, I am 43 and been diagnosed with ITP when I was 25 (1994). Some people only have one experience. Others vary. We are all unique in how we handle it. I don't want to scare you even more at this stage by sharing my story. If you want to know then I will but my experience don't mean that you experience it too.

Hey do we ever have poetry competitions on here? Obviously not major prizes unless someone has the finances.... But it be good to start up a fictional space for those of us who like to kid ourselves on we are creative in such realms and some are better than others and everyone is better than me at that but it might help some people work through some of the fears etc.

Hey, what is more I am even loosing weight on the steroids. The exercise bike is helping that. Admittedly not very much. But am achieving it and hoping to lost a little on wednesday. It is harder on steroids but is possibl ish depending on how fit we actually feel in ourselves I guess

Hope you feel more at ease. No one can't promise anything will/wont happen to you, just say what happens to us and hope that our experiences give comfort in your own situation along the line.

As I say, moon face in my experience is just a little plump. I do not wish to offend or be awful here but it not like the image one sees amongst downs syndrome disease if it is that was is really concerning you? Or at least, not in my own experience I will add. I hope am not out of order for saying that.

Caroline:

It's a coin toss as to whether or not you'll feel better by treating. I also have a demanding stressful job and Prednisone turned my life upside down and made it much harder to do the job for quite a while. I was on Prednisone for about a total of three months, including tapering, and it took another six weeks after that to feel nearly normal. I nearly quit my job because it was more than I could handle on the steroids. I hung in there, but paid a heck of a price with my sanity and health. My job performance definitely was rock bottom no matter how hard I tried. After doing that a few times, I refused to treat with high dose steroids because I didn't think it was fair to my employer (or my family) to have such an albatross hanging around. As you taper, the fatigue can be debilitating, especially with stress added.

You may not have the typical side effects but most do, and I'm just trying to give you a heads up.

Sandi,
I can only say my own experience and haven't had most of the experiences listed. We can all only say what we experience.



I was trying to say exactly how it is for me. Why are you seemingly quick to cover up my post by totally ignoring it to repeat what you have to say.

We are as very experienced as each other in our ITP journey and that is all any of us can really share on here. I dont mean that negatively but in that hopeful way. But your last post, whilst you hadn't said anything about my post, just totally ignoring it all when I have a pefectly valid experience to share about moonface experiences seems rather rude. I certainly felt your quick response after mine without any reference to mine is undermining and rude in this instance and what authority do you have exactly to be as you are seeing that you are a patient and not a authorised doc on the site. We pool in together and share.

I cannot help it if my experiences of steroids effects are few having taken them often enough in my life I know what I am talking about for me and that is all I ever strictly say on forums because in truth that is all we have. That is a positive thing to hear without being misleading. It is reassuring to the fact there is nothing scientific about who experiences what with these drugs. Just because it is listed does not mean most experience them.

I am sorry if this seems extreme to you but yes, we are all experienced as you are with ITP and no one of us are authorised to be authoritive.

I was also trying to give caroline the heads up as you say by being able to be specific with my experiences which are as valid as your own but does not give anyone the right to claim that most do/dont because one person has others to share. I am not giving false hope. I am saying as it is for me. I do get moonface effect but its just plumpness for me and that may sound less scarey for Caroline to deal with.
Yes I will admit I am offending how you rudely quickly posted after me without any reference to it hoping to ignore mine and it go away and please dont try to give the stuff about hadn't noticed etc.

We can only give our own experiences and share them to offer each other comfort on here and your treatment of my last post did not offer any comfort to me in return. Prednisolone does not turn everyones lives upside down as it didn't to me and it be wrong of me to say otherwise so please let those of us who have positive experiences share them as equally as all of you who have negative experiences. Not everyone has negative experiences to things.
sorry

Rhiannon - I didn't even read your post, I was responding to what Caroline said last. As for the timing, I just happened to log on then. I don't sit here all day waiting for someone to post so I can pounce. Not my style. You can say whatever you want. I was relating my experience purely as a patient.

I was on 100mg with a 5mg taper/week, with a hold in there somewhere, so it was a 20+ weeks and I didn't haven't any moon face - just the other "fun" side effects. Nor did it improve my counts!

Caroline, Maybe the Doctor is referring to Dex not Pred when he is talking a big slug of steroids, just a thought.
I also got all the side effects from Prednisone including the moon face but I was on them for a long time (10 months at doses of mostly 40 to 75mg) totally threw me because the Dr that put me on them only warned me about the weight gain so all the other stuff came as a surprise. Silly me thought that it was the ITP that was causing the problem until I found the PDSA site and read that it was the meds, boy was that a relief.

However prednisone did help with my counts so that was good and although they did effect my life I would do it again if I had to.

Good luck with your journey

I don't understand why Rhiannon was upset with Sandi's post, we're all just telling our stories in response to the question. Nobody was stepping on anybody else here in this thread - what was that about?

I got a moon face but I have lots of cheeks to begin with and I really didn't notice until I saw pictures of myself long after. I remember Jerry Lewis (the comedian) had a really extreme moon face, he was on a lot of prednisone for I think kidney problems.
Erica

Caroline, I am another person who has tolerated prednisone well--so far. I have been lucky in that my hematologist is not an alarmist, and he began me on 40 mg./day and when I responded, in a few days, began reducing my dose. He keeps me on the lowest dose possible to maintain my counts in the 20s. Perhaps had I been a larger person, he would have given me a higher dose in the beginning. My only negative side-effect from the bigger dosage was sleeplessness, feeling wired. (He also gave me a RX for ambien, which I don't have to use very often.) I do worry about long-term effects of pred (I've been on it for the better part of 11 years), but I do everything I can to keep my bones strong.

Hi Caroline. I too am "big" and when I was on 50mgs of the nasty pred, I did have the moon face. When I look back on my parents' 50th Anniversary party pictures, I cringe! I talked my hema dr. into dropping the dose to 30mgs, but the moon face didn't go away. I have been off the pred since last Dec. One thing to remember about ITP and it's treatments, it doesn't always work the same way for everyone. Some of us have had the moon face, but you might not. Good luck.

Thanks everyone for your responses. It does sound like there is a chance I may not get it. I will make sure that I go on the minimum dose necessary as my count is not that low.

They'll always start you on a high dose to see how you react to it. Once you get to know your ITP and your reaction to steroids and other drugs you are able to make your own decisions. By which I mean that when I started with ITP I started on 60mg prednisolone but after time when I had to go back on steroids I refused that dose and would only take 15mg because I know that I will respond to that. But it's sensible first off to try the full dose, get a normal count and then taper slowly to see whether the normal count will stick. It didn't for me but it does for some so it's worth a try.

I did have the moon face unfortunately and hated it. It was what I hated most about steroids. But really it is temporary, the first time I was on steroids it took a while to appear and wasn't really as bad as I made out! I was also lucky in that one of the side effects I had was that my taste disappeared so everything tasted like cardboard, so I didn't over eat or put on weight as some do. In fact I lost weight. I'm actually very grateful to that side effect.

My initial treatment for ITP many years ago was 80mg Prednisone for 4 months (IIRC). I most definitely acquired a big ol' round moon-face, as well as a host of other fun side-effects. Plus, I gained 40 pounds over the first couple of months.
Not to mention the toll it takes on one's family, friends, and co-workers....because I was NOT pleasant to be around during that time period.
I'll never ingest Prednisone again, if I can possibly avoid it.

.

I have been on prednisone for about 3 years total, off and on over the past 10 years. I have never gotten a moon face. But, I always have other difficult side effects; insomnia, irritable, edgy, high blood sugar. During the taper I get awful achy muscles and am tired all the time.

thanks and sorry I seem to be having a bad week as kind of got banned from one forum though in hindsight that was a relieve as ws never comfortble about being a forum member though er that wont stop me re registering as someone else to see what has been said - ethical or otherwise

So I apologise for over reacting and may be it steroids and may be it just so sorry everyone for spoiling it all and sorry Sandi. Am so used to not being heard I do take it personally these days. My issue not yours.

Though am doing something about not being heard in my usual warpy way and researching information about Hubert Parry - to be public speaker at various charities and organisations etc.

It been a bad week online but so humblest apologies everyone

What is considered a full dose of prednisolone for there seems to be varying amounts.

am always started on 60mg for two weeks then get tapered - or that what the old consultant did. But others seem to be on 80mg or higher?

Sorry Caroline for jumping in on your post back there.
I dont seem to have a moon face this time. And for the very first time ever with thanks to the exercise bike I have lost 1 pound at slimming world on 60mg so very happy with that achievement. Hard work as I cycle for 30 minutes every day. But it may have helped stave of the moon face too. It will be more pronounced on some than others I guess. On me I just look chubbier.

Rhiannon, I didn't intentionally ignore your post. Sometimes I don't have the time to read through everything, so I answer without doing that and come back to the other posts later. I have a lot of monitoring to do and that takes time. I can only do my best. Let's just forget about it and move forward, okay?

i had horrible moon face!! this is me during the steroids and then about 5 months after being off. of course one is winter where i am also extremely pale and the other is in the summertime.

i was on prednisone for about 9 months altogether and started out on a dose of 60mg/day. i gained about 20 lbs and seemed like most of it was in my head! thankfully it only took me about 6 months to lose the weight.

i will NEVER go on pred again as it did not work for me at all, after i tapered off my count went back down into the 30,000's. the side effects were too much.

Never say never. I said that and ate my words. I ended up on Prednisone for another autoimmune disorder and it's been 7 straight years so far.

Hi Sandi

Yes we can move forward

Okay!

Hi Alison,

I have just been put on Prednisone 40mg/day, and was told I may get slight Moon Face.

My family said, What's that ???
Thanks for making it possible for me to be able to show them what can happen to someone when they are on prednisone.

Hope you can find another medication which will work for you, and have less side effects.
Wishing you lots of Platelets in the future.

Benny.

Hi Caroline 68,

Thanks for asking this question, and I certainly don't think it was a stupid thing to ask.
Your action has resulted in me being able to show my family what to expect, due to Alison's reply to you about this subject.

So from me many thanks for your action.
Wishing you no Moon face and plenty of Platelets.

Benny.