new to support group

[cjhnsn29]

Hi! I am new to this support group. I would like to see how everyone else handles there WG?

[annekat]

Welcome to the forum. Reading all the posts and threads is a good way to learn about the many variations in how people experience WG and how they deal with it. Also, if you will tell us about your own experience, how long you've had it, what your symptoms are, how you got diagnosed, where you are treated and with what meds, etc., we will undoubtedly find many areas of common ground. This forum has been the best resource for me in finding out all about this disease and this is an excellent group of supportive and caring people, most of whom I now consider my friends. So it's a good thing you found us and I hope it proves just as valuable to you.

[loisann11]

Welcome,

I just started a couple days ago and have learned a lot more already.

[Psyborg]

Welcome to the forum.

[morningsunshine]

I'm new too! I've found that searching around the forums for things that I have questions about has been the best way to learn about people's experiences. Right now, my main concern is dealing with prednisone side effects. They can be pretty brutal...

[loisann11]

Prednisone was my worst part of this whole thing. Even double pneumonia was more fun than the side effects. First issue was the wanting to eat everything in site, which I did. I did not gain weight at the beginning but as I slowed down the eating and lowered the prednisone it started adding up. I had most of the listed side effects. Muscle atrophy, headaches, restless nights etc. When I dropped from 60 to 30 I started having bad back pain and problems with my eyes. Not sure which was worse. Back ache made me double over to have it go away. If I sat I was fine. The eyes were bad. Felt real gritty, sticky watery, and pressure. Now that I down to 5mg it has started to get better. No longer feel like eating but old bad habits still linger. Eyes are almost back to normal. I have been down to 5 for about 5 weeks now. Just let docs know about all of them. He won't do much but mine finally took me from 60 to 30 then taper slowly... with all my side effects I tapered a little faster than he said but so far no problems. He did say I would be on 5 for a year. I just started this process at Easter. I was diagnosed early so was better off that way too. I still spend most of my time wondering is something is a new symptom or a new side effect. Hope you don't have as many as me. Oh the "moon face" is something I think everyone gets. Not much you can do about it and it will be the last side effect that goes away... for most... good luck

[morningsunshine]

Congrats on being down to 5! That sounds dreamy right now. I'm glad to hear that your eyes are almost back to normal. I've read that the side effects start going away at 10 and below, so it sounds like you are well on your way.

I'm bummed to hear that moon face is the last thing to go away. My face looks dramatically different...maybe I'll work up the courage to show the before/afters someday (maybe when my face has returned to normal!). Every time I look in the mirror I think "who is that?!?!"

[annekat]

Congrats on being down to 5! That sounds dreamy right now. I'm glad to hear that your eyes are almost back to normal. I've read that the side effects start going away at 10 and below, so it sounds like you are well on your way.

I'm bummed to hear that moon face is the last thing to go away. My face looks dramatically different...maybe I'll work up the courage to show the before/afters someday (maybe when my face has returned to normal!). Every time I look in the mirror I think "who is that?!?!"

Sunshine, your moon face may not be the last side effect to go, as I think mine was gone by 20mg. and that is not all that uncommon, though everyone is different. Although I see you are at 20mg and still have it. But it may go sooner than you think, when you start tapering some more..... I hope so.

[morningsunshine]

Thank you AnneKat! I'm glad to hear your moonface went away by 20mg. I've been taking pictures of myself to track the progress and the swelling has definitely gone down from a month ago...still not my normal self, but progress is progress.

[annekat]

Thank you AnneKat! I'm glad to hear your moonface went away by 20mg. I've been taking pictures of myself to track the progress and the swelling has definitely gone down from a month ago...still not my normal self, but progress is progress.

It's a good sign if it is already visibly going down. In my case, it's a little harder to tell, because I'm 62 years old and have extra fullness around the jowls that is typical for my age. But it's been a couple years since people have started telling me I no longer look "puffy" in the face. That coincides with when I was never on anything more than 20mg. pred. I'm currently on 15mg. because I had a little flare a few months ago and had to go back up to 20mg. for a short time, and am now tapering back down. Good luck with all that!