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Posted 9/27/2008 4:45 PM (GMT 0)
Just wondering since im tapering off of prednisone if my moon face is going to get any bigger..or if tapering off just means it's going to start to go down slowly...i know everyone is different and some people lose it quickly and some people it takes awhile..im hoping mine goes quickly..i didnt even have any side effects from prednisone (started August 6th at 40mg/day) until they put me on 120mg/day while i was in the hospital...im now on 35mg/day and will be finding out how much im going to taper off by on Tuesday, my first appointment since being out of the hospital (which i was in for over a month!)..so i've been on prednisone for a total of almost 2 months, which i guess is a long time?? not sure! they dr's say ive been on it too long, but i wouldnt know because the past few weeks have been a blur since going thru hell in the hospital..this whole thing has been so confusing for me because i was just diagnosed and then 2 weeks after that im in the hospital for a month..so it makes me not feel very optimistic about this disease..my doctor at first said i was mild to moderate CD and now hes saying im severe(duh)..but now im home and because im still recovering from this whole hospital thing..still not healthy yet..i get nauseaus and pain still, afraid to eat sometimes, afraid to go to the bathroom for fear of what is going to happen, and then sometimes im just not hungry like i dont know if im hungry or not or what..its weird!!..so of course i had to drop out of school for this semester, i had to weeks ago, but now that im recovering at home and really cant do much anyway, so i plan on staying in my house until i look normal again sad ..i know i sound vain but i just hate looking in the mirror at someone else..someone that doesnt look like me..plus i cant fit into any of my clothes, ive lost too much weight, so i look like a lolipop lol..big head with a little stick figure body! i figure since i need time to get back to actually being able to live "normally", gain my strength back (i cant squat or bend or do much of any type of activity w/o being in pain or becoming exhausted) and continue to recover from my first flare up, why not be a hermit until my face goes down a bit? lol....

Audrey   smilewinkgrin

Posted 9/27/2008 6:21 PM (GMT 0)
I know a lot of people who think it's cute haha...
I still have my round face and small body though my stomach is starting to turn into what I believe is called "apple tummy."
You should see those side effects go down as you lower your dosage though. I heard 10 mg is the magic number where you shouldn't see any. Hopefully this is the case...I go down to 10 mg today finally so I'll let you know I guess.

As for being nauseated and not eating, try and get something down. My nurses and doctors couldn't stress this enough. They said as long as you get something to at least coat your stomach then you should be okay. I use ensure and boost on days where I just don't feel like eating so maybe you can get something similar? I just know there really is a huge difference between when you don't eat and when you force something down.

I'm really sorry that you've been feeling so terrible. It really is a bummer...which is a huge understatement I realize, but I think you more than understand what I am saying. Keep resting and feel better soon! Don't let this stuff get you down :)
Posted 9/27/2008 6:45 PM (GMT 0)

120mg???  WOW...  That is really high.  You must have been pretty sick!   (((Hugs)))  I just came off of prednisone 3 weeks ago and my face is still chubby.  Everyone is different but it takes a long time with me to go away.  I just started trying to get the weight back off.  I put on almost 15 pounds in 3 months from this stuff. mad   

Posted 9/27/2008 9:01 PM (GMT 0)
yeah i was wicked sick...i didnt even know i was on that much until i asked! no wonder why the doctors kept telling me they gotta taper me off quickly..i didnt know i was on that high of a dose and for such a long period of time..the hospital can really mess with ur head..im still trying to get used to a schedule of being at home..i feel really out of place all the time...
Posted 9/27/2008 9:27 PM (GMT 0)
They had you on 120mg, and now they want you taper quickly? Wow. I was on 30mg for ten days, and my taper has been 5mg at a time every 5 days. Your body quickly adapts to the prednisone, and it needs a lot of time to adjust to not having it anymore. How long did it take to get down to 35mg? I don't get the moonface as much as my stomache bloats something horrible. It does go away, but like all weight gain, it takes some time. You're not being vain...it is hard to look in the mirror and not see the difference. Do remember that we are our own worst critics. It probably isn't as bad as you think. You've been through a lot already, which just proves how strong you are. Hope you start feeling better soon.
Posted 9/27/2008 10:56 PM (GMT 0)
Wow...hope you feel better soon. As to the alien in the mirror...still getting adjusted to the one who stares back at me. I've been on the stuff for over a year now...though could only get as low as 10 mgs...at least at this low I can sleep and I am not such a raging beast...heck right after intake of prednisone, if I go out to garden, all the bees get mad at me (buzzing gets louder more defensive) and start dive bombing me.

However, like playing the game, who has had plastic surgery on TV...I do the same thing with prednisone. It just has such characteristics that we start looking akin to each other...okay, it helps me pass the time...I just hope you don't feel too alone, cause, yeah, the alien in the mirror drives me nuts too...and oh, the lolipop thing is still so in (lol)...Alas, I am the apple which is sooooo out (thanks to this wonderful med)...none of my clothes fit me either, but for other reasons...
Posted 9/28/2008 5:10 AM (GMT 0)
I was up to 60...now down to 20 mgs...still have moon face pretty bad :(  my wife swears I don't but she's not a good liar...haha

another side effect i'm having is that i'm very weak- especially in my legs...has anyone else experienced this?

Posted 9/28/2008 5:12 AM (GMT 0)
I'm pretty weak in the legs too...and my fiance tells the same lies haha. Although he admits to a little bit of roundness but calls it cute so who knows?
I wonder about the weakness though. Although some of it is from humira for me but it was before that that it started.
Posted 9/28/2008 11:03 PM (GMT 0)
wow..the weak in the legs thing is scary....just got out of the hospital and today was the first time i really noticed how weak my legs are..they just buckle on me..i fell the other day because of it..im on remicade now, just finished my loading dose, and im also weaning off pred..was up to 120mg and and now down to 35mg a day..this has been done over about a 2 month period..and now im getting the fat moon face..jeez!..i thought the weakness in my legs was cuz im so weak from the hospital still, and i had a blood clot in my lung while i was there..but im really gonna look into that muscle weakness thing when i go see my GI tuesday..it could b from the remicade.. or pred or maybe its just me tryin to do too much this week as my first week back home...i gotta look into this!!! thanks for all your comments and support!!

Audrey
Posted 9/28/2008 11:20 PM (GMT 0)
I was on 100mg of pred for a couple months, now I'm down to 50mg but I have a really bad moon face, its SLOWLY going away, I'm sure a lot of it has to do with my 30lb+ weight gain from the pred too though.  I also notice weakness in my legs, but its slowly getting better since getting off the pred.
Posted 9/29/2008 12:36 AM (GMT 0)
I had sepsis in April and once I got home and started back to work I started to regain my strength so when my legs took a turn for the worse it confused me. It took me a little while to figure out it was the prednisone. I was on pred for about 3 months when I started getting the side affects associated with Cushing Syndrome (spelling). My doctor kept telling me it was the steriods but I didn't expect to have so many side effects.


As for the moon face (and1/2 of the side effects , including the weak legs): started to go away fairly quickly once I was completely off. The weak legs was really scaring and at one point I was going to ask for a walker because I was scared I would fall at work.
Posted 9/30/2008 1:13 AM (GMT 0)
My son was diagnosed with Crohn's in January 0f 2008 at age 15.  He was put on 40 mg of Prednisone for about 3 months and then tapered off.  He developed the chubby cheeks, moon face and bad, bad acne.  It did go away but it took some time.  He was put in hospital for pancreatitis and for a crohn's flare two weeks ago.  They put him on 40 mg IV steriods for a few days and then 40 mg pill form.  His face has puffed up much, much faster than it did in January.  Does that happen when you been on steroids before?
Posted 9/30/2008 1:23 AM (GMT 0)
I think it has to do with it being through IV, when I was in the hospital on IV pred my face got puffed up a LOT faster then it does when I take it in pill form.

Posted 9/30/2008 1:32 AM (GMT 0)

Yeah I was up to about 160 or 140 mg of pred. through an IV as well while in the hospital.  The swelling was considerably noticable more so with the IV than pill form.

My legs also swelled up about 3-4 times there normal size while in the hospital I guess mostly water weight.  Has that happened to anybody else?

Posted 9/30/2008 10:00 PM (GMT 0)
i was on 40mg a day of pred for over 2 weeks, with no side effects..then when i was hospitalized right after and got put up to 120mg a day through my IV thats when the puffiness started..i was there for a month and was tapered down to 35..and i just got out last week and just today got put down to 30mg a day...yeah my face is really puffy now..its definitely from the amount i was on in the hospital and for how long i was on it..i haven't gained any considerable amount of weight yet though..i was on a clear liquid diet for basically the whole time i was there, got down to 98 pounds..now im back to 110, about 10 pounds off my normal weight, but whatever i gained back is defnitely water weight...there is no way i gained 12 pounds in about a week in fat! I can barely eat still! this whole crohns losing weight and prednisone gaining weight situation is so strange! i just wanna eat normal again and not worry about it! ughhh...im just happy i dont have to leave my house with my face looking the way it is...i look like a fat faced version of me with a tiny body...so creepy!!! :( i just dont want the tiny body to start matching the face!!! :(
Posted 10/1/2008 2:17 AM (GMT 0)
Re: the legs: Yes, the leg weakness is due to Prednisone. I was hospitalized for 2 weeks recently, and it was partially due to my gut and the fatigue, pain, etc, but primarily because my legs were so weak I could not get off the toilet unassisted.

My GI said that muscle weakness is a Pred side effect, and the leg muscles are the first to go. Mine were exacerbated by the fact that I was basically bedridden for an entire month prior to my hospitalization. Luckily, with exercise, I have regained a lot of my strength and mobility, but have a ways to go.
Posted 10/2/2008 3:19 AM (GMT 0)
i went to my GI yesterday...muscle weakness got worse..i couldnt walk today..i felt so dead and jelly like..just like complete crap! they think its the 6mp..so im off of it now..hopefully i feel better soon..i cant take this anymore..it was all about pooping and eating..which it still is haha, but now i cant walk? come on..i need to be able to do something normal!! :(
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