Moon face, weight gain. Only into month two of GCA

Hello All,

Thanks again for the posts. I've been following most of them, especially regarding the side effects of prednisone and weight gain. I am on 60 mg and hope to start tapering in 2 weeks. Unfortunately I still have occasional GCA and PMR symptoms which are most prominent at the end of the day and night. The scariest is of course the head ache, jaw pain and ear aches.

Back to moon face. Apparently all my fat wants to shift from my arms and legs to my neck and face. I have been adjusting my diet, yet it seems I need to be more aggressive. I've decided to go with the "no carbs" and "lower calories" approach as most of you recommended. There are several names, pretty much the same diet. I maybe fighting a losing battle and will just have to accept the "moon face" for a couple of years. Yet, I still want to try. If anyone had any success reversing the moon face while on prednisone, I would love to hear your story.

I meet with my GP today and will discuss with her as well as Chronic Fatigue. I know I can't do much about the fatigue as I am early on in this illness and still learning to adjust. I pretty much slept through the weekend as I had such bad insomnia before.

I will keep you posted on my progress. I have never been good at adjusting my eating habits. I love to cook and eat!

Wishing everybody a good day or night!

Best,

TJ

23 Replies

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  • Hi TJ, you seem to be doing pretty well in spite of the moon face side effect. I think the important thing is to try and stop it happening in the first place, although this may not actually be possible. I gave up simple carbs and gluten as soon as I started pred, and it worked although it may just have been luck. My GP was very impressed though!

    The fatigue is a real pain. I just give into it and pamper myself.

  • Hi TJ,

    Think most of us have suffered the moon face even if haven't put weight on anywhere else - seems to be par for the course, unfortunately.

    I found early days there were necklaces I couldn't wear any more - but as you reduce Pred everything does go back to normal. It's just a matter of riding it out - sorry!

  • I was never on as high a dose as you - but I lost weight and the moonface while still on pred.

    You have to hold on to the fact that the pred at that high dose is protecting your sight. Pred side effects are not nice, no-one will dispute that, but none of them are worse than the potential ultimate side effect of GCA: loss of sight and even possibly stroke. That thought has to be a sort of talisman to compensate for the less attractive aspects of pred.

  • Hi all,

    My GP, who is a good friend of mine, smiled sadly when she saw me and rubbed her cheek. Oh well, chipmunk cheeks it is for me. I also ran into a friend today I haven't seen for several months. He said, "You look....ah good." I really felt bad for him as he doesn't know I've been ill and he couldn't quite place what looked so different.

    My GP said low carb diet is a good thing, yet as I didn't gain weight in the last 4 weeks, I should expect the side effects (moon face) to continue, especially on 60 mg. She also encouraged me to start the methotrexate as soon as possible.

    We are going to a family reunion the first week of July. I'll have to prepare the family for my uber cheeks. After July, I'll consider the methotrexate. I don't want to introduce more medicine side effects yet. It's tough now.

    I walked about a half mile or less today and am totally wiped with a raging headache and earache.

    Thankful for my sight and treatment. I just need to remember the prednisone is a good thing for me. The alternative is not good.

    Thanks everyone.

    TJ

  • Did you see Kate Gilbert's post 15 days ago, with 3 photos - before, during and after pred? It was inspirational! The title of the post was "Moon Face", so search on that.

  • Hi,

    So, I'm in my 11th week of steroids. I'm 5' 3" and 8 stone, maintained on low carbs. But! My face stil looks like a hamster after a nut feed. The lady in the Post Office thinks she's being sympathetic when she cocks her head to one side, puts out her bottom lip and says she can see I've still got the cheeks, but it makes me look well. She's very lucky the safety glass is there!

  • LOL - I know the 'post office' look - puzzled and unconsciously 'starey' like they want to say something but not sure exactly what. Well yes the 'moon' face - I've got it now too despite losing 11kg on the low carb approach over 4 months. It's a 'perfect' round face alright and I even have a wee bit of a lower chin - which I never had even when quite heavy - so quite strange for me. But as others have said a 'small' price to pay for NOT having a stroke or losing eyesight.

    Best to all

    Rimmy

  • SnazzyD,

    You made me laugh and laugh. She is lucky there's safety glass. Thanks for bringing a smile to my face this morning!

    TJ

  • Hi,

    I'm on 60 mg for GCA as well and my face is round. I gained 10 kg weight since February all around my midriff and neck and face. I couldn't manage any diet yet as I'm sometimes hungry in a way I never experienced before. And a grave all the unadvisable food!

    I started Methotrexate last week and I believe my temple ache is getting less now! I'll be on the same regime till mid July for sure. Enough time to try the interval fasting. If I only be strong enough.

    I see myself in the mirror and I don't like what I see. BUT I take it anytime for getting better again. I have temple ache, ear ache, jaw pain. Not much headache.

    You see, you're not alone. I'm up almost every night. Somehow I got used to it and I manage much better.

    Hope you can keep the weight down. And hope you'll get better soon. Have a good day or night.

  • Thanks Akino,

    It is nice to know I am not alone. And Rimmy is right! I am so lucky to still have my sight. I believe I was pretty close as does my rhuemy to losing my right eye.

    Next time I look in the mirror I'll focus on the fact I can look in the mirror. And that this is a journey that takes time. (This self talk works until I get the steroid weepies!). The pictures of Kate Gilbert are great and very inspirational.

    I'd like to follow your experience with the methotrexate. My husband heard a bad story and does not want me to try methotrexate despite my GP and Rhuemy advice. I believe it is worth a try as to minimize steroids and according to some data, minimize the inflammation. These nasty headaches and temple pain really limit what I can do and how I respond to folks around me. So I am glad to hear yours are better!

    Be strong and remember baby steps are sometimes the best way to introduce diet changes. I just had a smaller bowl of oatmeal instead of a full bowl.

    Have a great day or night For me it is 5:00 am and am taking my early dose of prednisone.

    TJ

  • I did take my 12 pills at 5 am as well and went to bed again afterwards. Fortunately I could sleep some more. I wake up mostly around 3 am. About the Methotrexate. I read all the pros and cons. It's indeed a very personal decision. I decided to go for injection once a week with 60 ml because I want to reduce Prednisone. That's the one and only reason for me. Sorry to hear you have to suffer bad headaches. I never had bad pain really. Take it easy. It takes time to fully comprehend whats going on with your body, but it gets better. It's different, but you will get better. And we have such a wonderful community here. I love all the emotional support I get and feel not alone. And all the knowledge we can get. Have a good day!

  • It is. Now one year since my journey with GCA began. , I am now down to 6mg pred (from62.5) and am still on 20 mg methotrexate (weekly) I think I have reached my limit at 6of pred . Will happily sit on that until I see specialist in sept .

    I have had no nasty side effects from the methotrexate, tho of course one must be aware of cuts/ infections etc . It has been an emotional year with all the concerns of the disease, getting used to the new me, (eg , tired, round faced , not able to sleep , fatigue etc, ) I feel now I have achieved something ...... my first year done ! ( and at last I can sleep a good 6 to 7 hours... )Am looking forward to the day when I can report it's all over, no more GCA or PMR. I know it's a way off yet, but I believe we must be positive

  • Thanks islandgirl50,

    Great news that your down to 6 mg. There is an end of the tunnel. Just curious, how did the methotrexate work for you? How long have you been taking it? Did you notice a difference in symptoms?

    Any input would be great as I need to decide which medicine to add to help reduce the steroids and hopeful bring this disease into remission.

    Thanks,

    TJ

  • Hi Tj, I started methotrexate about a month after diagnosed with GCA . Straight to 20 mg ., and was the non 62.5 mg prednisalone . I had no side effects at all ,from the methotrexate and had no problems decreasing my prednisalone until I went from 8 to 7 .... that wasn't good, but I sorted it out with advice from this fabulous forum .i am still on 20 mg of methotrexate per week ..I know some people have bad side effects, but not everyone. Good luck with your journey . It's all rather from ghtening at first , but one just has to be positive , and get help if you get overwhelmed .thats why I love this forum .... Angeline .

  • Thank you. Your post was helpful.

    Best,

    TJj

  • I honestly did find that cutting carbohydrates helped avoid the desire for food.

    There is a physiological reason behind it - pred causes your liver to release random spikes of glucose into the blood. That in turn triggers the release of insulin to deal with it which tends to over-correct and your blood sugar falls too low which makes you crave food to rectify it. Rinse and repeat. at the same time, there are fairly large amounts of insulin circulating as a result and that leads to insulin resistance on the part of cells (steroid induced diabetes) and also to the extra glucose being deposited as fat in the usual place, around the midriff, face and back of the neck. If your food is predominantly protein and fat and low carb veg those swings don't happen as much.

    As soon as I cut carbs - the weight started to melt away from my waist, very slowly but noticeably. Especially when I got to my daughter's wedding and the trousers I had bought only a month before were too big around the waist! Not as bad as the spares from the previous winter - they fell down!

  • Hi PMRpro,

    it's again a pleasure and interesting to read your post. I know you cook from scratch. And I know you told me already about your way to loose the Prednisone weight. It just takes an effort to change. For me to change my cooking habit. We eat lots of veggies already. I probably need exactly posts like your to get me going. Thank you!

  • PMRPro,

    Daughters wedding are so special. I have 3 and 1 is married. What a treat to have your outfit be too small. It's usually the other way around. It's hard to believe that my pants are falling down too. I am losing weight around my hips and buttocks and it's crawling up my stomach to my neck and face. Really what a weird metabolism. I'd rather the fat stayed on my hips and buttocks. Oh well. I have no control over that aspect so I won't ponder.

    Thanks for your post.

    TJ

  • I might not have minded so much if I'd had something slim - but my weight went on all over!!!! And especially around my waist which was a whole new experience, I had never been apple shaped before, I've always had a waist! Back to that shape now - and now I can't find trousers/pants that fit because they are all made for apple-shaped people, not hourglasses!!!!

  • PMRPro,

    Hourglass figure! Another future positive for us!

    Good for you.

    TJ

  • Not entirely sylph-like though...

  • I currently look very similar to a cabbage patch doll...I can't even smile properly as my cheeks are so chubby and tight lol. I currently warn everyone who hasn't seen me for a little while 'don't be shocked when you see me!' But I still get the pitying silent stare and one of my friends at the weekend burst into tears (she was feeling a bit emotional after a bottle of vino) and she's seen me lots over the last few months. I had to laugh even though it hurt my chubby cheeks.

    Having never been this overweight in my life it's an interesting insight into being bigger, I've found myself knocking things over with my hips/bum, seats being too narrow, and I've even bruised my bum on something in the carseat that I have sat on with my new 'overspill'. Having to readjust my spatial awareness to my new width! Although my OH is always knocking into things, hitting his head and kicking stuff...he blames it on being 6ft 4 but I'm sure after 48 years he must be used to it lol!?

    The thing that keeps me positive is that this will get better, not sure when but at some point it will. And hopefully I will look back at the pictures and be grateful for the fact I don't need Botox or fillers at 46 thanks to my pillow face, I mean Madonna paid a fortune for hers and she doesn't look any better than I do 😁

    Big hugs x x

  • Trixiechamp you have such a great sense of humor. I forgot about cabbage patch dolls. They are very cute! Thanks for your post and I hope you are doing well with your reduction! Good luck on the 12th.

    Back to bed for me for another hour or so. I just took the prednisone.

    TJ

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