Another worry! I'm only into month 2 on pred and all the rest, but having read the experiences of many of you who have had PMA for years and therefore copious users of pred in all its different quantities, do any of you get a moon-face? Sorry to ask this pertinent question, but I've read nothing of it here, though I do know steroids can cause it. I am losing a good amount of weight, but does the moon face still come?
I now have Type 2 diabetes as well, induced by pred. as some of you know. Does anyone know if continually cold hands and feet, which I seem to had had for years is a symptom of either of these things? Also sudden cuts on the sides of two knuckles? Could be eczema but never had that before and they sting.
I know someone will know the answers! Thanks!
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It may do - it is because pred causes the body to lay down fat stores in particular places: around the midriff, the back of the neck and around the face. But it doesn't happen to everyone - I have a chubby face but not a moonface.
The other things? Difficult to say - pred can make skin very dry, and the handwashing with Covid doesn't help. Cold hands and feet can be a problem due to vasculitis and poor blood flow but not always.
Gosh! How long did the moon face take to come and what amount of pred were you on? And why and when did it go? thank you for this and the skin thing. So helpful.
Came within a couple of months of starting Pred. I was on 15mg but it went within about 2-3 months. Not sure why it went, possibly because my Pred was being gradually reduced.
I got a moon face 5 years ago with PMR but not with GCA in recent months and a higher dose. It just dies down, especially if you are losing weight. My husband gets little cuts on his hands in the winter, it is an expression of eczema. Use lots of base cream. I shouldn’t worry too much about cold hands and feet because it’s not new. Some people just do. Do you have Reynauds disease ( white patches when your hands are cold)? I think that can be linked to our diseases ( excuse the spelling).
Jane/ I’ve just read that cold hands and feet have a symptom of diabetes, which explains it all. Just hope I can hang onto them – Unlike a friend of ours who has had both his legs amputated due to diabetes! Nothing like being cheerful on Valentine’s Day is that?!
Jane, as one worrier to another, I am concerned that you are getting into a bit of a state with health anxiety. It is a worrying time and I find myself endlessly looking things up and feeling doomed at times. Try to give yourself a bit of a break from googling. The diabetes will most probably rectify itself, especially with the help of your diabetes nurse. You have already demonstrated awesome will power with your weight loss and phenomenal walks. I think your self care is commendable. I am not saying, don’t share your concerns, that is the sole reason we are here. I just don’t want you to get into panic mode by looking up every manifestation of the disease and making yourself feel worse than you need to. As I say, I have been there and it can become a kind of ever diminishing circle. 🌻
Jane-You are so right. I am becoming a hypo! That I think all my questions have been answered now so I will keep quiet from you all. Reading and answering everybody it’s so interesting but takes so much time as you know. Thank you for your care.
No please don’t feel reluctant to share your concerns. Just be aware that you might be sucked into a kind of anxiety spiral. Perhaps I am identifying too much Jane.
Don't stop commenting/concerns, it helps others with similar worries. My face has become more rounded with my double chin becoming firmer. Until I point it out though, my friends didn't seem to notice. I did not gain weight overall (except by over indulging at Xmas!) My reaction is, I would rather have a round face than pain & the prednisolone works for me.
I developed a moon face on 25mg but it disappeared as the dose came down. I can’t remember at what dose - somewhere in the teens. Also skin which was already dry used to come off in flakes. That also improved and I moisturise twice daily. My teeth became very sensitive which was very much helped using Sensodyne toothpaste but is no longer a problem on a lower dose. On a positive note, the moon face while it lasted, removed a few wrinkles.
I was able to manage my weight well during first 18mths on pred and didn't develop a moon face at all. However, 18mths on it was Christmas again, I had my first flare, ended up back on 12.5mg of pred from 2.5mg!....and I became a little too complacent regarding what I was eating. This resulted in me gaining a stone in weight! I found that second time around on a higher dose brought back certain side effects , but much more pronounced this time. So......much easier weight gain, more 'peach fuzz' on face, and much chubbier cheeks (though not quite a moon face) I know that as I taper down, these things should diminish, so I'm not too concerned.....and as Meggsy said..........I might have chunkier cheeks, but they've plumped out the wrinkles beautifully!!😂😂 Always an upside!!😉😉
Well photo journalist ,I’m on the Keto diet and it does work. You buy the app and it is full of delicious recipes of eggs, cheese, salami, chicken, fish – lots of oil but no carbs or sugar. Well I am allowed 15 carbs a day which is nothing So I struggle with that. However if you read that one tangerine consists of eight carbs you realise you cannot have any fruit except raspberries or blueberries. I miss fruit most of all. Like with this forum, their Facebook group is very helpful as well. The food is just seem very different and rather delicious.
It is imperative that I do lose weight because the Pret has made me into a type 2 diabetic. If I can get my ESR down, my haemoglobin should go down and then I could be free of diabetes. Hope this helps .
I have always eaten healthily so I just tweaked things further. I knew that steroids change the way the body metabolises sugar (it's deposited much more readily as fat in body) so I cut down even more on sugary treats. I allow myself a couple of pieces of dark chocolate each day (85% cocoa solids) and one small cake type treat but rest of diet consists of lots of fresh veg, some fruits (certain ones have high sugar content) lots of protein like fresh fish...particularly oily fish like salmon, eggs, chicken, quinoa, some dairy products, wholegrains, nuts, seeds, and lots of water. I have a good breakfast and eat at regular times so I don't get hungry. I also go for a walk every day and now do an hour of gentle yoga every day...for bone strengthening. All these things in combination seem to have worked.....until I took my eye off the ball and stupidly thought 3wks of Christmas indulgence would make little difference! What a rude awakening that turned out to be! Finding it much harder to lose the weight I gained than if I'd not been on pred, but I WILL do it, however long it takes! Hope that helps, but please feel free to ask me anything further if you need to.
Thanks for all this. I follow similar diet with Keto and I am determined not to cheat because of the price I’ll pay later. I’ve lost 13lbs but just can’t lose the last three! I seem to be stuck and I e stuck rigidly to the plan which is so annoying. I suppose with discipline and time it will go but want it gone now!
Thank you Kendrew for taking the time to reply. I'm always interested as I'm really fighting this weight gain thing but I do have both PMR & GCA and have been really hit by chronic fatigue that to be able to do as much as you is only something I can dream about at the moment. I used to be a bit of a gym-bunny, but no longer! There are days that I can't really move, let alone go for a walk. So I guess that's probably how I'm putting weight on as I, too, eat healthily as I mainly have a fish and vegan diet as I'm intolerant to dairy and eggs and I don't eat sugar. I wish you luck with your weight loss and hope that you are soon in full recovery. Take care.
Try and stay positive....the encouraging thing is, that as steroid dose decreases, these side effects decrease also. Takes time I know, but there's light at the end of the tunnel.
Thanks for your pertinent comments Kendrew. Sounds like I’ve got a lot to look forward to! But the side effects of pred I have just discovered is that it has also turned me into a type 2 diabetic as well! That wasn’t on the hymn sheet when I started so have plenty on my mind now. Thanks for the reply.
Quite a few people have very successfully reversed their type 2 diabetes that was brought on by pred, with a low carb diet to reduce weight where necessary and to minimise sugar intake....particularly hidden sugars. There are posts about this if you take a look. All is not lost.
I got ‘moon face’ that subsided when I got below 8mg. Started on 50mg in 2014.
Second time around went back to 20mg - have the displaced fat around my stomach and back of neck and cheeks. Currently on 8mg and waiting for cheeks to go down.
Unlike you , i piled weight on , had a very round face , and lost loads of hair !! But one of the worsts side affects for me was the sweating , so hard to cope with ! On the upside i was on 40mgs of Pred , now down to 5. Im losing weight my hairs thicker, and my VERY round face is going down. But the best thing is that i still sweat but nowhere near as much ! Good luck on your journey and dont lose hope.We all get there in the end ,one way or another ! x
Like you Viv54 I have piled on weight and I also sweating. The sweating has been horrendous and as you say, so hard to cope with and I think the term drenching sweat says it all. Glad to hear yours isn’t as bad now.
Hello, I’m 6 months in with GCA, left hospital on 60mg, currently alternating 15/12,5 . Developed chubby face within weeks, have put on a stone even though I try to monitor food intake and eat very healthily... am desperate to lose the round face, but think the dose will have to be much lower before I do... good luck
Healthy eating and low carb are often two very different things in that healthy eating includes whole grains and fruit - both sources of lots of carbs.
Poor you . But 60mg is high and I suppose the famous moon face is bound to happen. I’m on 15mg now for second month so I’ll have to wait snd see I suppose. Thanks
I had a moon face and fat deposits around the base of my neck. I have always watched my sugar and carb intake so haven’t gained weight in the 2 1/2 years on pred. I found the moon face appeared when I got below 12.5mgs looked weird on me as I have quite a slim face. My family thought it was funny, once below 5mgs I noticed it starting to disappear gradually. I’m not sure about the cold hands and feet though 🤔 x
Cold hands & feet are symptoms of poor circulation caused by diabetes. I’m diabetic (type1) and eat low carb, close to 50g/day. This has enabled me to keep my weight steady and BG levels in check. I was diagnosed with PMR 5 months ago and am down to 6mg pred. I have noticed that I have increased fat around my midriff area, which is uncomfortable, but I haven’t developed a moon face.
For me it was 2 months in even though the dose for GCA & PMR was decreasing. I know if I had anything with salt, the next day it was pushing up my cheeks. I had an oval face with high cheekbones. Once Prednisone decreased considerably, my face has returned to normal, except now I have some jowls, where I had none before. I keep the picture on my job ID done before the moonface but early on in treatment. Then there's the moonface in my picture ID at Kennedy Space Center for joining to get the best discounts. I remember my boss asking if there was something I could do about it. Other than no salt, as I did lose weight with dietary changes, I couldn't change what happened to my face. Very important to love the self. You are irreplaceable and loved, always!
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