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Moon face help

Posted , 13 users are following.

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Guest

My face and neck area have been terribly swollen for about four months. I have GCA and have begun to drop my pred dosage. I am now at 25 mgs for one month and will then drop to 20. Can you share your experiences with the moon face with me? On what pred dosage did your face begin to return to normal...how long did it take? I actually feel a bit better than I look! Recently a close friend did not recognize me. I will be on the very slow taper after 20 mgs. Thanks ahead of time, Ann11195

2 likes, 20 replies

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  • tina-uk_cwall
    tina-uk_cwall Guest

    Posted

    Well done, and I do believe that the very slow taper is the best. I do not suffer from GCA so fortunately have never been on the very high doses but the moonface will go as your dose reduces, that's all I can say. All the best, christina 
  • lodgerUK_NE
    lodgerUK_NE Guest

    Posted

    Yup Moonface does go and I was sad to see mine go as back came the wrinkles and chicken neck neutral

    Length of time we are all different so all I can say, it takes as long as it takes for each individual.

    PS I would not drop 5mg at a time, try 2.5mg.

    Golden Rule no more than 10% at a time, much better and once down to 10mg, come and talk to us again.

  • audrey80537
    audrey80537 Guest

    Posted

    Hi Ann,although I did not get the moon face I have read on this site and others that when you taper down it goes away.  It is said to be water retention that settles in that area.

    i am currently on 23 mg down from 25.  Since starting on it in March with a couple of flares I suppose I do have some water retention in my face because I suddenly look much younger then I did which gives me a bit of a boost as I try to deal with all of it.  

    One thing I do have is ugly red spots on my arms and legs which I cover with long sleeves and pants.  A bit uncomfortable in the hot Florida climate.  However, If I look hard enough I can find really attractive tops  on line.

    Take care and I'm sure it will improve.

    Audrey

    • EileenH
      EileenH audrey80537

      Posted

      The moon face is due to fat I'm afraid, not just water - pred makes you store fat in particular places - midriff, back of the neck and round your face. They all go away eventually - and cutting carbs will often help lose it a bit quicker. When though depends on the person.
    • Guest
      Guest EileenH

      Posted

      Thanks so much...have reduced carbs and sugar but not til after the huge face and neck...I need patience!
    • EileenH
      EileenH Guest

      Posted

      That is the one thing you learn with PMR and GCA - but it does get better! I have lost a lot of weight including the hamster cheeks while still on pred - but never above 20mg. It was there at 20mg and started melting away slowly from 15mg, albeit on a different form of pred. 
  • Padada
    Padada Guest

    Posted

    hi Ann,  This is my experience, just fyi.  I started at only 15 mg, but my moon face appeared fairly quickly.  I really did not look like myself.  I am now down to 13 mg. per day and my face has already settled down some - I would guess my moon features have decreased by 50%.  It still has a way to go though.  However I am happy at this amount of relief.  Hope that helps, but of course it is an individual thing. 
  • Susanne_M_UK
    Susanne_M_UK Guest

    Posted

    I had the same experience where an old colleague didn't recognise me. I used to have a slim face and a slimming body and hate to catch sight of myself.

    I started on 40mg Pred in December 2014 and have just managed to get to 18 this week due to a couple of flares.

    My face is still hamster like, although someone I saw a month ago told me yesterday that my face appeared slimmer, but that's probably because I've changed my hairstyle from fringe to departing in the hope of making my face look quite so fat. Sorry I can't be of more help, but from one hamster to another, I sympathise!

  • ptolemy
    ptolemy Guest

    Posted

    I was told that cutting out gluten and simple carbs stopped the moon face happening. I don't know if that is true or not, but I did cut out the gluten and simple carbs as soon as I started pred and did not get a moon face.  I am not sure if someone already has a moon face, changing their diet has any effect or not though.
    • tammy37294
      tammy37294 ptolemy

      Posted

      I started on 20mg Twice a day last week. I am now starting Week 2. I am beyond frightened of the moon face and weight gain as I have been on a low Carb diet (under 20 carbs) and 1350 calories pet day since Feb. 1 and lost 18lbs. I am still sticking to this plan and I haven't noticed and bloating, anxiousness, sleeplessness, moodiness or Moon face yet. I am only going to take 20 mg this week as a percaution and then hopefully find another solution. It is there any possibility that I won't get Moon face or is this a for certain fate?

    • ptolemy
      ptolemy tammy37294

      Posted

      I did not get a moon face. I gave up simple carbs and gluten and it seemed to work. It may have been just luck of course.
    • EileenH
      EileenH tammy37294

      Posted

      I didn't get a bad moonface but I did put on a lot of weight all over, including my face and neck, although about half of it was being inactive with untreated PMR - but when I went low carb I lost 36lbs in weight over the following 18 months and my face is mow normal shape. I could do with losing another few pounds but would have to go to almost zero carb compared with what I do just now. 

      Do you have a diagnosis of PMR or of GCA? If it is PMR 40mg is a very high starting dose and really is unnecessarily high, 20-25mg is more usual. If it is GCA then 40mg is a normal sort of starting dose though normally it would be given as a single dose in the morning, splitting the dose is not recommended for GCA.

      There are not yet any alternative for managing PMR and GCA besides pred. PMR is one thing to say you will investigate other options, I lived with it for 5 years, fairly hellish years it must be said, where I gained weight due to inactivity because I COULDN'T exercise because of the pain and stiffness. I was depressed, unable to live a normal life going out with friends, I was isolated and dependent on others for some time. 

      GCA on the other hand is a very different matter. However unpleasant you may consider developing a moonface it is small beer compared with the risks of leaving GCA untreated: irreversible loss of vision is the primary risk. If you lose vision in one eye because treatment is delayed, there is a very high chance that you will lose it in the other eye within a few weeks even if steroid treatment is initiated at that stage. 

      ptolemy is not the only person who didn't develop a moonface - it isn't a given, none of the listed side effects of pred are a given. There are over 82, no-one gets them all, some people get none. And most of them can be managed if you know how. Being blind is a different matter.

    • tammy37294
      tammy37294 EileenH

      Posted

      The Dr. had me try the Prednisone to give me some relief for extreme back pain. I was diagnosed with Ankylosis Spondylitis when I was in my 20's. I believe I am having a flare up of that. I would imagine after this round of Prednisone, I will need to explore some other pain management solutions. I refuse to stay on Pred even though it works miracles for the pain.

    • EileenH
      EileenH tammy37294

      Posted

      If you have ankylosing spondylitis then your doctor is a bit out of date. It is now managed with biologics and they are far better than pred - as well as there being a fairish choice! AS is not uncommonly misdiagnosed as PMR - but if you already have the AS diagnosis they should be working on that.
  • Susanne_M_UK
    Susanne_M_UK Guest

    Posted

    Sorry, no way of editing posts, hair is side parting! And "slimmish" body!
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