Balloon face with pred
Posted , 13 users are following.
I started with 40 mg pred about 2 1/2 yrs ago for treatment of pmr. I am currently down to 15 mg. and am on my third week of using a drug named Actemra, which is supposed to reduce the need to take the prednasone. I am taking this injectible every other week. Dr giving me samples until we can get my insurance to approve it, if that happens. It is one of those very, very expensive drugs, about $1500 per dose.
Two questions:
is anyone else out there taking Actemra...if so, what has your experience been?
I have a severe case of balloon face, where my face swells up as a result of taking steroids. At what dosage does this go away? I have also picked up around 30 lbs. since I began taking pred. I am told as you reduce dosage that this tends to go away, but so far I have not seen this. Even with cutting back calories, I have not been able to reduce weight. What has this group's experience been with weight gain and loss?
0 likes, 18 replies
EileenH Senormacho
Posted
If your diagnosis was "only" PMR then 40mg was an excessively high dose to start you at - 15-20mg is the recommended and usual level. This is because PMR is characteristic in responding to such doses and when more is required then it is a sign that MAYBE this isn't PMR but either large vessel vasculitis or GCA or even another form of inflammatory autoimmune disease. Certainly the fact you have had problems getting the dose down would support that.
It isn't calories that count when you are on pred - it is carbs. Pred changes the way your body processes them and by far the best way to manage weight when on pred is to cut carbs drastically - especially processed carbs and all low fat diet products. I gained weight in all the usual places when on Medrol - I changed to prednisone and a low carb diet and lost over 35lbs over the next 18 months, including the moonface and midriff bulge that are so common. Last autumn I had to return to 15mg pred from 7mg but by watching carbs I have remained at about the same weight as I was then and even the doctors at the local hospital admit you would not know I am on pred at all, never mind 15mg!
amkoffee Senormacho
Posted
In my experience your dose is still high enough to make losing weight difficult. I did not start losing until I got below 10mg.
Bethune Senormacho
Posted
I think its really important to consider every single body is unique and different. While all The information and advice on the form is very helpful its crucial to remember that your body and circumstances are unique, and what may be true for one person may not be true for you.