hi all. i'm one of the ones who trolls the site! i get a great deal of information from you all, and thank you for it. i don't post often because i'm still trying to figure this all out. my dr just today put me on prednisone for the first time. i'm quite nervous about it, as i've heard horror stories about weight gain, and i already have too much weight to loose.

my hands are my biggest problem right now, as they hurt so much it's hard to write/type for any length of time at all.

any stories you all have about how prednisone works, and it's positive effects would be great to hear :-)

@meandmeg, it is a great drug and your dosage will have alot to do with weight gain. You will be happy with the addition for a while till some of the side effects start to show, but hopefully they will find another drug to use to take its place.

And all you lurkers, we need you typing. Tell us anything. Alot of us just want to talk about it and your story can help others. No ones always happy and it feels so good to beable to vent here when you have stopped venting to family and friends.
Robert

Lurker here, but I have posted a couple of times recently. I've been doing well lately considering all the stress I've put myself through since the kids went back to school. I don't know what I was thinking but I took on the Homeroom Parent Coordinator for the entire school. 37 teachers w/anywhere from 2 to 5 parents that have volunteered as Leads or Co-Leads.

My biggest complaint is the morning achiness. Plus the August humidity hasn't been nice to me but at least it's only around for a few weeks.

Take care all & I will try to post more often.

Jen
P.s. Some of my favorite posts are Cat's. Love reading your comments and have missed them when you have stepped out.

Thanks, Kolby.... I'm making an effort at better self care by going to bed earlier, so I'll try (uncharacteristically!) to make this brief...

Yeah, the high humidity is a killer, from headaches to body and joint aches. I go with Sudafed in the mornings and one strong cup of coffee; I might have one half cup later in the day. Seems to get me going. I'm not convinced that exercise really makes symptoms worse in a consistent way. My thinking now is, sometimes it does, sometimes it doesn't-- and if humidity is high, that's more likely to make a work out or a swim or a brief surf session make me feel worse instead of better.

The other thing I've noticed is the humidity changes are worst. If it's been 65-75% for a week or so, I kind of adapt. But when it goes from 30-65 overnight, that's when it really gets to me.

My car runs great when the humidity is high, which is some consolation. Though a few years from now, I don't know if I will still be up for dealing with an elderly Japanese sports car....

My steroid dose just got increased to deal with my current flare which has affected my hands and left hip, I am clinging to my job. I visit this site at least once a day. Most people outside of this group don't truly understand how taxing this can be. It is nice to interact with the group and people with similarities to me.

Hello everyone- 8 weeks flare free and actually feeling good.. I started a new adrenal fatigue herb from Gaia and it is doing wonders. I am exercising and cleaning my house without feeling like I am going to break. I know a flare can put me down and out in a heartbeat but loving the feeling good. Best wishes to all of you!!!!

Hi Everyone
I was diagnosed with MCTD/SLE in May of this year. I am still adjusting to all the new meds and problems. I am in the middle of a bad flare. All I want to do is nothing!! My rheumy said that if I am exposed to anyone who is sick will kick my immune system in overdrive. Is that everyone's experience? It's wonderful to know that I am not alone on this God forsaken island. I wish there was a cure!!

Love to all
Shawna

Well I'm about a month late for this roll call.
Lots of news. I've been going through tons of tests due to my falling. The last time I looked like I had been in a car accident. Nothing broken this time.
Anyway, after months of testing it's not neurological, woot woot. I have sleep apnea. I quit breathing average 41 times an hour. Am on cpap machine (sexy) but think I am starting to come out of my fugue.
Kinda pissed, been told for 5+ years it is due to lupus but turning the page, so looking forward to feeling awake.

Hi All!

My name is Nancy and have been lurking on this site for a couple weeks now. I am not new to DS however. The pseudotumor cerebri discussion/group have been family to me for years. I haven't been diagnosed with MCTD but my labs and symptoms are looking that way. I will post more after appt with Rheumy monday. It's nice to read your stories! Thank you in advance.