Has anyone lost weight with PMR/GCA on high dose Prednisone?

ps - he is currently on 80 mg prednisone per day for GCA, splitting dose 50 mg in the morning, 30 in the evening, to control overnight headaches. Single dosing does not work for him. It didn't for PMR either.

I have to say I have a much more predictable eating habit and corresponding weight gain on prednisone. I might suggest he drop His Rheumy a message on MyChart and ask whether he should be concerned. The doc may choose to do some bloodwork to ensure it looks ok.

We have mentioned it but I will mention it again, especially now that he's eating more and still losing. It's worrisome, although he says he's feeling better, more energetic now than he has in some time. We are waiting on results from chest, neck and abdomen CAT scans which might tell us something. She said this was the next step when I questioned her on what we're doing to ensure there isn't something else going on. She's the one who mentioned there could be, even cancer which freaks me out. Praying it's just a reaction to the prednisone like he believes.

Crossing all my fingers
🤞

I experienced weight loss on steroids while my symptoms of inflammation
were under control. The inflammatory cytokines like IL-6 do promote weight loss.It felt very easy to lose weight on a standard Mediterranean diet.
This is similar to what happens with cancer but just due to inflammation in my case.

Weight loss is common for untreated PMR/GCA.

Weight gain is common for PMR/GCA treated with Prednisone.
https://www.verywellhealth.com/how-can-i-lose-prednisone-weight-gain-1942985
I'm having a terrible time losing my Prednisone weight gain. My endocrinologist said my long term Prednisone use probably caused me to have Metabolic Syndrome.
https://my.clevelandclinic.org/health/diseases/10783-metabolic-syndrome
Diet and exercise are the primary treatments along with lifestyle changes since I have discontinued prednisone. I'm making progress albeit very slow progress losing weight.

I'm off my cholesterol medication and the three blood pressure pills I was taking when I was on Prednisone. I just can't seem to get back to my pre-PMR weight. I still have a long way to go even though I have been off Prednisone for a couple of years.

My endocrinologist says my insulin level is high so I have insulin resistance. We are trying to address that problem now that my cortisol level is back to normal. I'm not diabetic but my endocrinologist says if my insulin level doesn't decrease, I will be diabetic.
https://www.medicalnewstoday.com/articles/317015#:~:text=Taking%20prednisone%20can%20make%20the,produce%20in%20response%20to%20stress.
My endocrinologist says hormones regulate everything. Prednisone disrupts the balance of our hormones.

That's all pretty frightening. I didn't realize all the consequences of Prednisone. We're still fairly new to this. He's been on Prednisone since May 2023 but had tapered down to 12.5 mg from 30 mg for PMR. Then all hell broke loose when he developed GCA last month and he had three 1200 IV infusions of methylprednisolone. Now he's on 80 mg per day and has been for almost 2 weeks. With all this prednisone he's still losing weight. But he has lost that chipmunk cheek look he had about 3 weeks ago when his inflammation levels had skyrocketed. I hope you can get all your levels back on track and that you don't end up with diabetes. It sounds like you've been through a lot.

You're saying weight loss is common with untreated PMR/GCA and weight gain is common when these conditions are treated with Prednisone. Which worries me since he's had all this Prednisone for months. I can only think positive and hope for the best. He says the prednisone makes him feel hyper and he gets a bit shaky (hands.) He's thinking that's what is causing weight loss. I just want to get confirmation that nothing else is going on and I'm praying this week's labs will show a reduction in his inflammation levels. We've only dealt with PMR until very recently when he was diagnosed with GCA.

The crazy thing about all of this is my husband was so healthy for so many years and this came out of nowhere.

Sadly it was weight gain for me…. but I was not diagnosed with GCA after testing. I do have a hearing loss from PMR though. Hope he gets better soon.

I lost 45 lbs in 10 months with PWR/Prednisone. Felt the best I have ever felt in my life, except for the PMR. I lost some muscle due to the prednisone but most of the weight was because I changed my diet to heal myself. Vegan, no glutern, dairy, oil, alcohol, and nothing inflammatory. I started at 60mg and now am at 4mg. For the most part my inflammation and pain are below a 1. I exercise 5 days a week. Weights and cardio. I have had a bone density scan and I have not lost any bone density which is a good things.