Weight gain or loss?

[gtate1914]

Since being diagnosed with gca and pmr and on prednisone, has anyone lost weight instead of gaining weight? I keep hearing it's common to gain, but in my case I continue to lose even though I feel I'm getting plenty to eat, of course no junk food, sugar, refined foods etc.

[SnazzyD]

Hello,

I lost about 8lb I think in a few weeks, then plateaued. This was with having no carbs and very low salt from 60mg until about 10mg. To a certain extent I think it was the condition as well.

[Mahnahvu]

I wasn't diagnosed with PMR until about 1 year in. The last three months of that was the period where the PMR was rapidly worsening and I lost about 5 pounds even though it was over the Christmas season. So that was unexplained weight loss that I attribute to PMR. Once I went on prednisone, I dropped the carbs to very low (Keto) levels for blood glucose control and quickly lost another 15 pounds. That weight loss has plateaued and I have trouble keeping my caloric intake low because prednisone keeps me hungry all the time. Eating a ketogenic (low-carb, high-fat) diet normally creates a satiety that results in people eating less, but prednisone will have none of that, so I deal with ravaging appetite all day long.

[PMRpro Ambassador in reply to Mahnahvu]

It isn't the calories that matter if you are on a ketogenic diet - you probably need to eat more.

[Mahnahvu in reply to PMRpro]

Well, I likely need to eat more "fat" to better increase my satiety. Butter in the coffee actually does help.

I was just viewing a video yesterday by one of the leading authorities on low carb diets, Dr. Eric Westman, where he remarks that the metabolic advantage of the ketogenic diet only amounts to about 100 calories, and that calories still matter. Here is the link: youtu.be/rSRTnDsMCHQ(Not working as expected?)

[PMRpro Ambassador in reply to Mahnahvu]

Exactly - you need to INCREASE your calorie total when on a ketogenic diet. It is the lact of carbs that leads to the weight loss. So if you are hungry - eat more...

[PMRpro Ambassador]

Some people do lose weight - I think there are perhaps about a dozen I can remember on the forums.

[gtate1914]

I do try hard to keep carbs low. Eat full fat foods. Since first of January I've lost 31 lbs without trying. Was maybe 10 lbs more than I should've been..... Continuing to lose. I eat several small meals a day. Will check out what the keto diet is all about.... Thanks for the input.

[DorsetLady PMRGCAuk volunteer]

Hi,

I did put on the usual - around face, neck etc, but not particularly body weight, although I had increased pre diagnosis - lack of mobility I think mainly, plus stress, eating unhealthily to a certain degree (carer for hubby, snatched meals etc).

After the initial high doses I did lose weight, but I think that was due to many factors - not all GCA/Pred related - more mobility certainly as pain free, but my husband died and that brought on a lack of appetite, plus less eating out, and probably thinking more about what I did and didn't want.

[CT-5012]

Yes me too, had also lost weight when on 60mg for a few weeks when I had thyroid eye disease. This time have a half moon face but no other fat bits! 😨

[Hidden]

Hi there,

In the 2 1/2 years I stayed the same weight, around 150 pounds. Since January of this year I have lost around 5 pounds. So overall 5 pounds down. I watch carb intake and walk every day.

[tgca]

You're not alone....My normal weight when I left school was 9st 2 oz!! I have kept that weight pretty regularly ever since then but when I started pred, my weight reduced to 8 1/2 stone and, like you, it won't budge upwards!

[tgca]

Oh, I forgot to say I was 17 when I left school and am 69 now!!

[gtate1914]

I'm glad to hear all the comments..... it's certainly not all that unusual. First time in my life that I don't mind putting on a few pounds......

[SheffieldJane]

I lost weight quite rapidly in the run up to my PMR diagnosis. I can’t help wondering from what you’ve said before, as well as this, whether your initial GCA dose has been high enough to get on top of the inflammation. Certainly see your doctor about it.

[gtate1914]

That's been in the back of my mind. Couldn't get ahold of rheumy or my gp so self-dosed which she hates me to do.... up to 70 mg, didn't feel symptoms were being resolved, major anxiety as result. Stress was a factor also. When I spoke with her yesterday she wanted me to do 55mg today, (I had taken 60 day before, down from 70mg the two days previous.) Made me a little nervous..... Extremely tired this morning, very slow, but not experiencing anything like the previous few days. Holding my breath..... If 55mg will work for me, will stay here longer than she would like for me to do..... Of course she wants me off pred quickly, ..... but don't we all want off quickly, but am coming to realize it takes much longer than anyone likes.....

[Mrs-CJ]

I was losing weight before my PMR diagnosis and then after I started prednisone (20 mg) I continued to lose....lost about 23 pounds and was down to 104.....felt like a skeleton. As my pred has gone down, my weight has very slowly crept up. When I was almost down to 2 1/2 mg my weight was almost back to my normal, but now I’ve had to increase up to 4 mg my weight has gone down again.

I can’t eat dairy and I avoid a lot of sugar, but I do eat lots of carbs (grains, sweet potatoes, etc) to just keep my weight where it is.

[diplodocus]

I've stayed the same weight (altho I could lose a few kilos ). I wasn't give any dietary advice by rheumy . I take Vit D and omega oils and I stopped drinking alcohol

Is low carb just to fight against weight gain or does it help with auto immune generally ?

[Jamie345]

I gained a lot of weight wish it was the other way round does not help with trying to be active I also have severe hair loss

[Lanakay in reply to Jamie345]

I have gained a lot of weight. I’m always hungry.

[Judy211]

Hi. I lost about 12lbs quite quickly and have stayed at almost exactly the same weight ever since ( GCA since March 2017). I eat a really healthy diet but I’m not super strict all the time because I love eating! Even so, where once my weight might have fluctuated with weekends away etc, I now find it stays absolutely static and I even look a bit skinny. Spent years worrying about those few extra pounds and now I’d quite like them back! Be interesting to see whether the situation changes in the future with lower Pred dose and the GCA on the back burner.

[Katrinaroper]

I found I lost half a stone...as I wasn't in so much pain and more able to do things...i also watched my carbs (But not much!!!lol)

[powerwalk]

Oh everyone losing weight - crikey - I put on weight a few months into the Pred. Never put on weight in my life before this - now I have a layer all over me and a severely bloated stomach - not to mention the fluid retention - swollen ankles and feet. I feel like I'm pregnant - without the baby. I do notice when I'm off work for a week or so on leave that things start to shift a bit - but as soon as I'm sitting here all day - forget it - that fluid builds up like crazy and I don't have the energy to be exercising as well as working. Another thing to look forward to in a few months hopefully when I'm finished work - losing some of this build up!!! I did though lose weight before I was diagnosed like a lot of people.

[Bizgirl]

I initially gained weight but now have lost about 25 pounds over the past year. I've gone to a plant based diet and am really enjoying it (RE: Forks over Knives and How Not To Die). No dairy,very low fat, low salt, no oil. Amazing how many canned goods have oil in them. I am absolutely feeling better. Finally down to 7mg of prednisone.

[DianeA1]

I have eaten anti-inflammatory foods right from the start when dxd in 1/2018 and in 2.5 months lost 25 lbs, back to high school weight. I never thought I would be this thin again and am very comfortable. Hoping that by adding the 10,000 steps will help trim a bit more and firm up, but if I don't lose, that is fine. Dear Husband said donate all old clothes and buy new! I have added back into diet good quality butter and cream. I know Pred is keeping that pain away, but I will never eat the amout of carbs I used to at the thought of them causing inflammation. Plus, I am most grateful that my joints have less work.

Best to everyone!

[gtate1914 in reply to DianeA1]

I'm glad to see many others have also lost weight, was beginning to worry that something else was going on with me! Lost 31 lbs from the first of January until now. Eating much less carbs, more healthy foods, no junk food.

[sondya]

I told my rheumatologist I couldn't stop eating and (of course) ballooned. He told me not to worry, blame it on prednisone and my appetite will come back to normal - which it has. Gone is the moon face and weight has gone down from 73kilos (11.5stone) to 67 (10.5).

No foods recommended or avoided, just ate what I liked.

[EdithWales in reply to sondya]

Well done Sondya, that’s what I like to hear, do nothing, I so wish I could.

I ate like a demented rabbit for 2 years and kept the weight off but having a flare knocked me back and having to go right up on the steroids was so dispiriting that I ate everything that wasn’t nailed down. The result has been I can’t get into my clothes and am buying ponchos. Moreover I disgust myself, so it’s back on the rabbit food for me and my nagging daughter makes me exercise.

Never mind, it will get better. Off to enjoy some delicious lettuce leaves for breakfast. 🥂

[RheaV]

I've had to work very hard my entire life just to maintain my weight-I lose it very quickly. When I was first diagnosed with PMR, I went to a naturopath. He put me on a very strict diet to see which foods I could not tolerate. And so for 6 weeks, I could eat only meat, eggs, some fruits, lots of veggies (except for potatoes, peppers and tomatoes). No legumes, nuts or seeds. I told him this wouldn't work, since I would lose weight very quickly. I lost about 14 pounds and quit this strict regimen , and am now about 115 lbs (it fluctuates quite a bit). I now limit my carbs and eat lots and healthily, but I just can't seem to get that weight back. I am now at 5.5-6 mg of pred. Does PMR cause weight loss?

[PMRpro Ambassador in reply to RheaV]

It does for some people - not as many as it causes weight gain for though!

[Hartmare]

Hi, I've dropped 12 pounds but I am on an anti-inflammatory diet. This strict diet means no eggs, no Dairy, no certain grains such as wheat and oats, no nightshade vegetables, no sugar, no alcohol, no certain fruits such as citrus, strawberries, melons , Etc. To name a few. I'm also taking a few natural supplements. I will be going down to 8 mg of prednisone in a week. When I get on a lower dosage I will reintroduce some of these items back into my life very slowly. Since this diet one month ago I have felt much better other than my arthritis right hip which has a mild ache. A lot better than what it used to feel like. Good luck to everybody on this tough journey through life.