Moon face...

[Gladys911]

I've been steadily reducing prednisolone for GCA since September last year and had not really worried about the weight issue as I was more concerned about my sight and other side effects. However I am now down to 4 mg a day and am appalled by my moon face and what looks like a buoyancy aid around my middle. I hate dieting especially when I am coping with other issues, but I eat healthily (though I do like a glass or two of red wine). My question is, does the weight gain/ distribution sort itself out when I come off pred, and, if so, how long does it take?

[SnazzyD]

It does go eventually. I didn’t put on weight but my fat went on a hike to those areas as it doesn’t for the majority. Muscle loss from my limbs just accentuated it. Weight gain does make a difference but it isn’t the whole story. I can’t say I could chart the speed of it going as it was a slow creep. I did find that the effects of Pred didn’t fully go away for some months after stopping Pred and my last year was on 1mg or less. We are all different though.

I will say two things, though I have no idea if you what your weight situation is. Weight isn’t the only concern, but rather blood sugars. Eating healthily doesn’t cut it with Pred as carbohydrates are much more of an issue. One can tick along with a diabetic range of blood sugar just from eating a normal diet. Eventually, some become diabetic due to the long term insulin highs. The risk is less as you go down, but the horse may have already bolted.

[Gladys911 in reply to SnazzyD]

Thanks for this - I imagined it would be a slow process. I don't have a problem with sugars as my intake is very low, and it is definitely the distribution of fat that is bothering me, my weight hasn't increased significantly but it is a bit depressing looking in the mirror (perhaps a trivial concern). As I have made good progress with pred so far I should be down to 1 mg by September I was just wondering how long (if ever) it may take to get back to normal, or perhaps I am being too optimistic.

[SnazzyD in reply to Gladys911]

It is trivial but it isn’t as scores of people will tell you. Getting over any major condition demands patience sadly.

You are on a low dose now and in a very short time for GCA so I will say don’t be hasty because you are fed up with the whole thing. The need for normality and our old self can beckons like a siren. Keep a good eye out for symptoms and signs of slow adrenal function. You may be one of the lucky ones, but don’t be tempted to blow it by going too fast because in terms of numbers, 4 seems to close to 0. 4mg could still be working hard for you.

[DorsetLady PMRGCAuk volunteer in reply to Gladys911]

. As I have made good progress with pred so far I should be down to 1 mg by September I was just wondering how long (if ever) it may take to get back to normal, or perhaps I am being too optimistic.

Maybe don’t bank on being down to 1mg by Sept especially as you were only diagnosed in Sept 2023. Lot of water under the bridge between now and then.

You will get back to normal, but it doesn’t happen overnight as you take the last steroid… your adrenals for one thing can take up to a year to be full functioning…

Me - 8 years in remission from GCA and back to normal fairly quickly…

[sidra1968 in reply to Gladys911]

I have quite literally stopped looking in the mirror..my once thick, waist length hair is gone and my face is unrecognizable to me. I just try to concentrate on the fact that I feel better and it doesn't really matter what I look like at 56, not really. I mean, I would have done ANYTHING to feel better, so..

Also, now that everyone but me is staring down into their rectangles like the end all be all answers to life is on that screen (I still have a flip phone so no screen for me), no one is looking at us anyway..not even kidding, I work at a hospital and am convinced I could walk naked down the hallway and no one would even notice. Employees and visitors alike. Sad.

[Koalajane in reply to Gladys911]

Just be aware carbs turn to sugar!

[PMRpro Ambassador]

It might - but it might not unless you take some action. Everyone is different.

I gained weight with inactivity and comfort eating with undiagnosed PMR over a period of 5 years. When I started pred I didn't gain more - it moved to the usual places, a bit on face but a lot around my midriff and back of the neck. When I was put on methyl prednisolone (because I moved to Italy where prednisolone wasn't used) I gained a lot of weight, After about 6 months I was switched to prednisone, moving from 20mg methyl pred that didn't really work to 15mg prednisone that did. Only 2 months later some of the midriff fat was slowly melting away (the spare black trousers for my daughter's wedding fell down ...) - I started a low carb diet and over the following 18 months I lost 35lbs of PMR and steroid-related weight. Which has stayed stable even at relatively high doses of prednisone - a lot of the time at 12-17mg. Since I started Actemra and got down to 7mg pred I have lost about 4kg - long way to go but I will have to get the head around lower carbs than I am at present which is maintaining my weight but not allowing for weight loss.

[PMRpro Ambassador in reply to PMRpro]

And the low carb route has the benefit of aiming for the fat deposits and using them up.

[Gladys911 in reply to PMRpro]

Again many thanks for everybody's experience and advice - I suspect that, like many on this forum, I was initially in shock from the diagnosis, adapted to the challenges which gradually became "normal". Now, seeing light at the end of the tunnel, things that didn't bother me when there were bigger issues to deal with are coming to the surface, especially as I have a major family event later this year. I will look at the low carb diet however.

[Alliekat65]

Hi I am on 25mg and have just had 2 weeks holiday and I HATED the pics of me especially my face. BUT we were inbthe lake district and I was just so pleased that my GCA had been caught and that I could see the view.on a low carb diet I actually lost 8lb so am.pretty happy. but im most happy I still have vision

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

True, your face will return to normal, eye sight loss will not.

Those of us with GCA may appreciate that more. 😊