I had cyberknife treatment on my AVM June 2016 and was only supposed to be on the Dexamethasone steroid for a few months. It has now been 9 months going on 10 due to brain swelling from the radiation that just hasn’t seemed to go away. I have gained roughly 45 lbs in this time and my face is so puffy its awful. My body is so much larger and I have developed horrible deep large stretchmarks. I’ve never had them before. I don’t really know how much of this is water weight compared to fat that has developed from being hungry on the steroids. It’s awful to see myself this way.
How much water weight did any of you guys loose after stopping the steroids and how much was fat that you had to work off later? Will most of this go away once i’m off the steroid? The problem is that they wont let me work out with the AVM still not completely shut down so i’m at a road block.
Thanks everybody
-Alyssa
Usually, but it takes some time to wean off the steroid.Do so carefully and with medical supervision. Too fast and you can shock the adrenals and it take longer to get back to normal.
They currently have me on a 2 month weaning schedule right now that is fairly slow to reduce symptoms. They also have me seeing an Endocrinologist and I will be getting a stim test for my adrenals at the end of the steroid taper.
I just cant believe all the weight and face puffiness, I’m hoping I start to see a difference towards the end of the steroid weaning process
I puffed up quite a bit with the steroids as well, I think over 50 lbs. It starts dropping off when you finish taking the steroids. Like you, doing workouts was not an option so I started walking. I walked to/from university sometimes 2-3 times a day instead of public transit, 45 minutes each way. I used the time to memorize formulae/topics for the engineering courses I was taking and dropped all the weight in a year (and more) and graduated… Water weight comes off much faster than the regular weight I put on laid up after my last surgery… You will get through this!
Thank you so much for this information, very useful. Yes you’re right, I know some of it will be water weight but I have no idea how much until I am finished the steroid taper and I start to see some of it come off, I know some of it will be left behind fat. Just don’t know how much! I will have to start walking more. Thank you!
Good responses. My daughter had an unrelated chronic lung condition: she’d get the moonface and weight gain every winter.Steroids are a blessing in disguise. One year we had to re-order her dance costume b/c she grew so many sizes. But steroid weight does come off more easily than regular wt caused by fat. No starvation diet required; but I did give the teacher healthy treats so she would not eat all those birthday cupcakes! She was on board with that. And she kept up with exercise, as the weather was warm. Her prednisone-induced acne cleared up. I suggest an adult look into bone density test. Steroids-long term-can cause lower bone density, perhaps osteopenia. So you’d want that knowledge early to keep up with strenghth training. Like lifting a small weight, something around the house. As per your MD’s advice, of course.Esp. with head AVMs. Sometimes a soup can is the wt for lower arm.
Thank you so much for sharing your daughters story. I know I unfortunately fit in almost none of my clothes right now. Glad to hear the steroid weight comes off easier than regular weight. Interesting that you mention the bone density, my doctor just mentioned that to me since I’ve been on the Dexamethasone for ~10 months and she told me to start taking calcium supplements for the time being due to possible early on set osteoporosis. So I started taking a calcium supplement twice a day. As long as the taper goes well I should be taking my last steroid on May 4th and hopefully then the steroid weight will start coming off. I’m sure there will still be some leftover fat from eating bigger portions from being hungry all the time on the steroids but I hope not too much. I’m hoping a lot of it is water weight