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Has anyone lost weight with PMR/GCA on high dose Prednisone?
My husband was diagnosed with PMR May 2023, GCA February 2024. He lost about 10 pounds or maybe a little more between being diagnosed with PMR and GCA. Since GCA, he's continued losing even though his pain is under control and has been for a number of days. He's gotten his appetite back and I expected to see some weight gain. Yet this morning he actually lost again. He began all this weighing about 193 and is now 174. Has anyone else experience weight loss like this rather than weight gain? He thinks prednisone is ramping up his metabolism causing the weight loss. Also, when he was in terrible pain he wasn't eating well, had no appetite so the weight loss was more understandable. This new weight loss troubles me since he's eating a lot more than he was a week or so ago.
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@janb62 I was pretty similar to you. I'm a small person, and I lost 4 pounds before I started getting treatment for GCA and PMR. Once I started taking 60 mg a day of prednisone, I gained the 4 pounds back plus 4 more. I also developed a little bit of a moon face. Once I got down to about 7 mg a day, I started losing the weight and the moon face. I found that prednisone slowed my metabolism a lot, and it was hard to know how much and what to eat. I finished prednisone 6 months ago (I still take Actemra), and my metabolism recovered about a month after I stopped the prednisone.
@jeff97
That’s encouraging that your metabolism recovered fairly soon. I am down to 4 mg and still have the moon face and the weight is still there. I'm impatiently waiting! I also am on Actema allowing me to get off prednisone which I'm grateful for. Tha ks for your feedback.
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1 Reaction@janb62 Yes, pmr can cause weight loss. I was realtivley small, too, and lost 12 lbs. People were very concerned, and in the beginning everyone (including me) wondered if something else was wrong. That was nearly a year ago. Lots of tests and so far nothing else has shown up. I'm down to 3 mg of prednisone and have put on about 2 lbs. I now try to stick to an antinflammatory diet. Have you tried that? I also do not eat gluten as it upsets my stomach. Fingers crossed our bodies' metabolism resets itself to normal when this is all done. Hang in there.
@cyndiefromnc
When I started on prednisone my doctor was amazed i didn’t gain weight. Then after 8 or 9 months i put on 8 pounds suddenly. Seems my course has been backwards. I do follow an anti-inflammatory diet and did in my "other" life before diagnosis. I hope our bodies can regulate when we're off prednisone. I'm starting 3 mg tomorrow and hope to start seeing seeing changes in my moon face. This has been a big hit to the ego! Best of luck to you.
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1 Reaction@cyndiefromnc
"Fingers crossed our bodies' metabolism resets itself to normal when this is all done."
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Sorry ... the metabolic reset doesn't happen as soon as you get off prednisone. However, it does depend on how long you have been on prednisone. My endocrinologist said my metabolic dysfunction will take a long time to be reversed and some of the things might be irreversible. I was on prednisone for a long time ... but I have been off prednisone for 5 years. Things are gradually improving. I have made a lot of progress compared to when I first tapered off prednisone.
@dadcue I am 10 lbs lighter. It is the only good part of this disease. Everything else sucks.
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1 ReactionI lost about 15 pounds when I was on Prednisone. I was on 60 mg./day for 7 weeks before starting my taper. Most of the weight loss occurred in the first couple of months. I did have 'chipmunk cheeks for about 8 months. I've seen where people on Prednisone gain weight. I'm glad, I didn't go in that direction.
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1 ReactionAs a person who struggles to lose weight I would have welcomed losing a few pounds when I went on prednisone. I kept my trend of gaining weight. My cheeks got so fat that I would hang up on people when on my cell phone because they got in the way. I have tapered to 2 mg. and my cheeks are normal again but the fat is more stubborn. I watch my diet and keep exercising and try to accept what I can't change.
I gained 20 lb in the first couple months of taking prednisone so I asked if I could go on a glp one. I ended up losing 50 lb over 7 months while I was tapering. I think in the long run this has helped my inflammation and aches related to my PMR. I hope more rheumatologist start thinking about using them in conjunction with prednisone.
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1 ReactionWelcome @joyl263, It's good to hear GLP-1 helped with your tapering and getting rid of the extra weight from taking prednisone. It's great to have a rheumatologist that works with you. You might find this related discussion interesting:
-- Experience with GLP-1, metformin, and Jardiance; and PMR
https://connect.mayoclinic.org/discussion/experience-with-glp-1-metformin-and-jardiance-and-pmr/
Is your PMR in remission? Are you still tapering off of prednisone?