I know that many people have posted here about their weight gain, usually due to the Prednisone. However, I have the opposite problem. All my life I have had a problem trying to gain and maintain my weight. When I started with PMR, I was initally on 15 mg of Pred, stayed there for about weeks, went down to 10 mg, and decreased slowly from there. I am currently on 7 mg, have been for a while. I feel really good (other than more tiredness than usual), have no pain whatsoever, but I have lost about 12 pounds--which for me is way too much. Has anyone else had problems with unintended weight loss?
Weight gain.: I know that many people have posted... - PMRGCAuk
Weight gain.
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I did with untreated PMR, I felt so sick and didn’t want to eat.
I have a friend with the same problem and she gets no sympathy, yet it makes her feel little and insignificant and she envies bigger women.
12 pounds is a huge weight loss for a slim person. I would want some blood tests for thyroid function and anything else that might be lurking.
I lost weight before diagnosis, in fact it was when I realized I seemed to be in the midst of a catastrophic weight loss that I finally managed to see a doctor who diagnosed me. Since then I haven't gained any back. I lost more last winter when I had a stomach upset (very rare for me) and that weight hasn't returned, so I weigh 102 lb, having been slightly over 120 most of my adult life. I'm concerned about this because I know if I were to get sick with anything I have no reserves. But I do exercise more, with my devotion to getting in 10,000 steps a day, and gave up most refined carbs because of high blood sugar with pred. When I asked my doctor she just told me to eat more. Sigh.
That sounds like me. I've been able to stay at 125 lbs most of my adult years--but I've had to work at it. The best part of being pregnant was that I could gain weight! I actually got up to 140! But now I'm down to about 112, and no matter how much I eat, I don't get much past that.
I didn't have trouble gaining and maintaining weight in younger years. In fact I lost weight after each pregnancy, and that's what brought me down to the low 120's from about 130, my highest weight being 150 when I was 15 - my parents feeding me too much, two cooked meals a day. I gave up the cooked lunch and very quickly dropped into the mid 130's range through the rest of teen years and early adulthood. I felt plump then, but photographs indicate I wasn't. I always thought I would be a thin old lady, though, because I would lose weight with traumatic experiences and not regain it, and that seems to have happened!
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I'm available for a fat donation any time they work out how to do it ...
It something that happens to some people - I think I've come across about half a dozen, maybe a few more, on the forums over the years.
I'm curious about whether your weight loss on Pred occurred bit by bit over the months you've been on Pred. Also whether you have or have not suffered much with the extreme fatigue others have complained of.
I ask because I needed to lost weight when I started on Pred, followed the low carb low sugar diet and lost weight easily, almost too easily I've thought. My weight stabilized at my very old post college weight and only recently on lower doses have I found myself creeping up a few pounds. (Could it be the pistachio nuts I've substituted for chewing gum because of some TMJ?
I also haven't had much of the fatigue that others have described. (not yet anyway). The aches and pains of PMR and steroid withdrawal don't leave me with lots of energy or get up and go, but I haven't needed to nap throughout, even through what I called the late afternoon weak wobblies or waves of weakness.
I have suspected that I've been having a different PMR journey, or a different response to Pred and that the weight loss and energy level things were somehow tied together.
I read about the challenges that many are having with their PMR and Pred, and I feel almost guilty. Once I started the Pred, I honestly have not had any pain at all. I have some aches but they aren't worth mentioning. I have always eaten very healthy, but now I am eating lots of veggies, more anti-inflammatory foods and fewer carbs and less sugar because I hear people saying that carbs can contribute to inflammation. But I'm not on an "anti-inflammatory diet". As for fatigue, my house is currently on the market for sale, so I have spent a lot of time getting it ready (lots of painting, scrubbing, etc), but I try to pace myself, and I do get tired, but I'm surprised at how much work I've done in the last month.
I have googled "weight loss and PMR" and it seems that weight loss can be part of PMR. So maybe this is not unusual.
10 years ago I had a major operation which led to me going from about 10 stone down to 7 stone. Gradually I put on weight until I reached 8 stone 10 lbs and stayed there until about 2 years ago when I started losing weight quite rapidly but at that stage had no pain and wasn't diagnosed until I went to the doctor with painful shoulders and then started on predisnolone. At that stage I had lost about 10 lbs but towards the end of last year I started losing weight again and am now 7 st 4 lbs. I was worried about this but now that I see others have experienced quite noticeable weight loss I feel less worried. I wasn't aware that it could be connected to PMR. Perhaps I already had PMR without the pain when I had the first weight loss. I am down to 3mg per day now and virtually pain free, some little aches but that could be due to old age! I keep hoping that I might put on some weight but the scales don't seem to be moving in that direction!
I went to the doctor with unintended weight loss ( about 12lbs probably over 10 months although not sure about the time scale ) and aches and pains and was eventually diagnosed with PMR. Over the 14 months that I have been on pred I only put on 3-4 lbs.
Last month I was told I was pre-diabetic and have watched my sugar intake since.
Since then I have lost 2-3 lbs. I must say I find it a worry and my doctor says eat more protein and dairy and eat larger meals or more often.
I am somewhat relieved to find that there are others like me. I have managed to taper to 3mg without any flares so I am pleased with that.
As you say maybe some of us just respond differently to pred.
Best of luck with your pred journey.