Vanity

Posted , 12 users are following.

Eight months ago, writhing in crazy pain, I never thought about anything other getting out of this nonsense.  

Amazing pain relief from prednisone, followed by ups and downs.  Flare ups and not being taken seriously.

New diagnosis on the way.

Large doses of prednisone have left me with a huge moonpie face.  Huge.  Triple chins, and as of this past week....hair loss.  Not just a few strands.  Barely a pony tail.  

Looking in a mirror is devistating !  

I guess I’m looking for anyone that was able to get off prednisone, and retain their face.... at least a little bit.

0 likes, 14 replies

14 Replies

  • Posted

    I have had eight years of PMR in two episodes of three and five years, three years in between. Although moonface was not one of my problems there were plenty of others; muscle weakness, hyper activeness, high BP. Both times they all subsided and finally went altogether once I was off Pred. Didn't happen overnight. About eighteen months to return to how I was before. It can be a long haul and it's no use trying to hurry as you will be told buy everyone on here. 

    Have now been in remission for more than five years.

    Best wishes and do stick with this forum; it's been a lifeline to so many.

  • Posted

    Megan, I'm soooo sorry to hear of your TROUBLES. I'm fairly new to this (about 3mo), so I don't have any words of wisdom. What I can say is I too have developed a Moonface, something I'd prayed I'd be able to escape. I've also gained 13lbs in 2wks (maybe more now, not sure)! The only upshot to this is prednisone HAS helped w/my painful joints and muscles. I've read many people who have been able to taper down, have pretty much returned to normal, but it's taken alot of time😕. So far, I've not experienced the hair loss (again, it's just been 3mo), but the texture of my once smooth, straight hair has dramatically started to change to frizzy, curly, and course! (So attractive!) So, with that being said, while prednisone seems to be a miracle drug of sorts, it certainly does have lots of less than wonderful side effects! You didn't mention what your dosage is. I'm currently on 16.5mg. Please keep me posted on how you're doing. Thinking of ya!

    • Posted

      P.s. I've also had MANY other side effects that are creating havoc with my body, including the possibility I may be losing my sight in one eye due to a quickly growing cateract being spurred on by prednisone! I need surgery w/in a month which I'm trying to work out financially right now. Ahhh, good times!!

    • Posted

      Hi peggy, I was advised Medicare would only pay 80%. I go for a surgical consultation in about 2 1/2wks so I'll find out more then. Fingers crossed!!

    • Posted

      Yikes!!! Giant cell thing???  I hope not.  I can’t get myself into the opthologist, even though I need new glasses.  Just don’t want to hear any more bad news😐.   Take care of yourself 🍀. Xx

    • Posted

      Dear Megan if you have PMR it is recommended we have regular eye check ups, about once a year, to ensure that we do not also have other things wrong caused by PMR side effects such as glaucoma and cataracts. My optometrist is a lot more knowledgable than my doctor.
  • Posted

    Hiya Megan. It does get better.. I started on 60 as I had GCA as well. I had the moon face, hump on my back, loss of hair, skin that fell apart if it touched anything and a weight gain....two years down the road and I m on 6, struggling to get lower. I m nearly back to normal looking.....so keep going..keep smiling and it will get better .. xx
  • Posted

    I gained over 35lbs with PMR and one form of pred over a long period, I had PMR for 5 years without pred so inactivity and comfort eating was to blame first of all and then Medrol was awful. After being switched to Lodotra/Rayos and starting to cut carbs drastically I lost 35lbs over about 18 months and now, although I could really do with losing a bit more weight, there is no sign of the moonface, I have my waist back and the neck hump is much smaller. That was all achieved at above 10mg pred.  Even the doctors agree no-one would know I take steroids. One lady in the charity put on 6st/84lbs with pred and didn't lose an ounce until she stopped pred - the weight just melted away and the moonface is all gone. 

    There is a thread where people who have got off pred posted about their journey:

    https://patient.info/forums/discuss/zero-prednisone-discussion-450915

  • Posted

    Yes!  Been through first PMR episode - lasted about a year, then all ok for about a year, and most recently just coming off a 6 month "flare" . . . hair loss and fat face with both episodes . . . but now at the end of the flare those nasty side effects are backing off . . . so my advice?  Grit your teeth and wait it out . . . best of luck from a PMR veteran . . . 

  • Posted

    You don't say what dosage you are currently on. I was already extremely overweight when I started prednisone and the last thing I needed was to add more weight, especially since I have a bad back. My goal was to maintain my weight. Well I didn't do very well at that because I did end up gaining 20 lb. And of course I got the expected prednisone moon face. I don't think any amount dieting is going to stop that. But I'm now down to 6 mg and I've been on 6 mg for quite some time and I have lost most of my moon face.

    • Posted

      Hi amkoffee, while I've been of average weight prior to pred., I've gained approximately 15lbs over the past few weeks. While I know this is not medically healthy, it's also a big blow to one's self esteem! I don't over eat, have a fairly balanced diet, so I fear how much this will go on?! I too have developed the Moonface (tho my kids tell me they can't see it).....I was on 16.5mg until yesterday when I started my taper to 15mg. I'm curious to see how this taper will affect my pmr over the next several weeks, along with some terrible side effects.

    • Posted

      I am so sorry, what side effects have you had apart from weight gain?

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.