Prednisone Question!

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RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/2/2010 5:38 PM (GMT -7)   
I've been on Prednisone since March. I started at 40mg and finally in June started to taper down to 10mg. I've asked my Dr several times to get off it and he has said it's in my best interest to stay on it. I have an appt on July 19th and I'm hoping he finally says I can come off of it. For anyone who was on it and is now off of it how long did it take you to lose the weight or any other side effects you had while on it? I've gained 30 pounds since March. Cannot wait to get off of it and hopefully lose the weight ASAP!! Thanks and have a safe and Happy 4th of July weekend!


RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


Bostongrl
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 7/2/2010 5:53 PM (GMT -7)   
HI--I was on Prednisone and got the puffy face and fingers, lost hair and face was hot from expanding so much. Gained weight also. Not to worry- it does go away! My hair came back and the puffiness went away in a couple of months. I also lost the urge to eat everything in front of me. You will be normal again!

RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/2/2010 6:03 PM (GMT -7)   
Bostongrl, Thanks so much that made me feel so much better. I haven't lost any hair I'm gaining hair in places I don't want it!! Like my face and just more hair on my arms. The first few weeks I had the urge to eat but that went away. Now I'm not hungry and still am gaining a ton of weight. Can't wait to not have a fat face again. Can't wait to be normal again and look like a 25yo. Thanks again!
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


Love_Art_Baby
Regular Member


Date Joined Jun 2010
Total Posts : 59
   Posted 7/2/2010 6:10 PM (GMT -7)   
The needing to eat everything in sight, night sweats, sleeplessness etc goes away really quickly, The weight (for me) takes a lot longer to get off, I went off in April, and I'm STILL trying to get the weight off, my face looks a lot less pufferfish-y, but not where I want it yet, and this stupid tummy won't go away!! I hate all the "diet" foods I can't eat.. how are you supposed to get rid of a belly when all you can eat is carbs..I also want to be a 23y/o again!


23 y/o
Diagnosed in 2007
Misdiagnosed w/ Lactose Intolerance @ 11 y/o
Misdiagnosed w/ IBS @ 16 y/o
3 hospital stays in the last 6 months
been on Asacol, Pentassa, Remicaide, Humira, Prednisone on and off (I think it's the devil) and lost more random things.
Right now 6MP ,Monthly B-12,Fish Oil, about to start Cimzia, just went off prednisone AGAIN, just stopped Humira
 
Married with a 3 y/o
~Want to get this back in control so I can try for another baby! :)


RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/2/2010 6:14 PM (GMT -7)   
Love_Art_Baby I think the worst part is not feeling like our age! Like tonight all my friends are out having a good time. Instead of going out with them I rather stay home in my safe zone. I would LOVE to go out right now have an ice cold margarita on the rocks no salt and dance the night away. But don't feel like it all. Feel fat, ugly puffy face, etc.Huh the wonderful life of being on Prednisone! Have a safe and fun weekend with your family!
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 7/2/2010 6:31 PM (GMT -7)   
I have been on preds now since January but have now eventually managed to drop down to 5mg a day, which I have been on now for the past 2 months as the doc wanted me on a maintenance dose atm as every time I stop taking I flare up again,which they are now investigating into why I can not come of it. But good news, even though I am still on 5 mg, the moon face has come down some what and don't look like whale any more, still over weight but was over weight before , but I haven't had to change clothes size at all whilst being on the preds. I know how you feel about not wanting to join in the fun, I had months of just wanting to sit at home , not just because of the pred face but general feeling of depression and not sleeping right , the preds didn't help matters either, but sometimes it is good to go out and be with your friends,even if you are not drinking and dancing round as you would, its more the company you need,maybe see if your friends would go somewhere quieter so you can maybe sit and chat and try and have a laugh to build your esteem up,it always seemed to work for me. This forum is a good place to get your anxieties out too, but you still need human contact, otherwise you will start feeling isolated and that's not good either!
I have now given up on trying to go on any diets as I cant seem to find any that would actually agree with what I can eat, people must accept you how you are and its not what you look like on the outside that counts, its what's on the inside that does!!! As long as you are upfront with ppl and they know you have a disease , and that you are on medication that makes you look like you do, you will be surprised at how people perceive you, most people understand and alot will try and help you get through!!
Good luck on the preds, and keep your chin up!! ;)
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 7/2/2010 9:55 PM (GMT -7)   
i'm down to 25 and my face looks like a marshmellow and i'm stuffing my face with tootsie rolls as i type. i hate prednisone. i also think it makes my skin like plastic for lack of a better description...i've been upand down on pred so many times i honestly can't remember how long it takes to get things back to "normal" once i'm off...looking forward to it though!
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 7/3/2010 3:02 AM (GMT -7)   
mtgman - I have the "plastic" skin thing too! Also, feels like I'm bursting all the time. Very very dry skin.

I'm tapered down to 10 and having problems so I'm discussing with md on Monday whether to go back to 20 and stay there for a month. I DON'T WANT TO. Will ask for other alternatives.

As I have posted here before I can't stand the side effects - no sleep, puffy, eating, skin - and just feeling like I'm in someone else's body.

RedSoxGirl - Good luck! I am not particularly thin in real life, so can't tell exactly how much Pred contributes, but I do find that the non-weight side effects go away very quickly, while the weight gain and to some extent puffiness has taken longer for me in the past
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/3/2010 8:04 AM (GMT -7)   
Prendisone is the devil, I'm sure of it! And it's even worse (i think) when you are young and want to go and have fun and look good. I read this post and all I could think was "you poor thing!". For me, once I have completely stopped it then the side effects diminish and are gone after about 2 weeks max. The moon face and puffiness go away quickly but the actual weight gain (from overeating over the course of months) might take longer but at least you won't be craving mass quantities of carbs anymore so it will be easier to lose the weight. Good luck.

RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/3/2010 8:18 AM (GMT -7)   
mtgman- Tootsie Rolls are a Fat Free Candy so eat up and enjoy!!

The weight thing is annoying but like you all said it will come off. After reading all this I started to think of all the other side effects and I guess the main issue is I can't weight to be myself again when it comes to my moods! I feel bad for the people around me when I'm in just one of those crazy moods. It comes on out of no where. God bless my mother for putting up with me! I guess I'm worth it as I used to be her little angel. Not anymore!!!
I also have the dry skin but only on my arms so I put lotion on all the time. Not sure what you both mean when you say the plastic skin thing? Just wicked tight skin so it looks like plastic or? I've been playing Wii Fit daily and also walking to help try and lose this weight but it doesn't want to come off. On the 19th if the Dr tells me he wants me to stay on longer like he did last time I'm going to tell him NO or just start the taper process on my own. He wanted me on Entocort as the next med to take but it was going to cost just under $500 a month even with insurance. So not sure what his deal is but I told him several times the side effects just weren't worth it. Oh well guess that's life can't always be wonderful and perfect!
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 7/3/2010 3:37 PM (GMT -7)   
Call me crazy, but I love prednisone. I don't care if it gives me a puffy face or a short temper... without it I wouldn't be able to function.

RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/3/2010 3:43 PM (GMT -7)   
You aren't crazy at all minou! I love it too as it helps so much and lets me have a normal life but at this time in my life I'm not happy about it. I have two weddings that I'm in coming up and not looking forward to being the fat, puffy, bridesmaid! Feel bad for the brides as I'll ruin their pictures. LOL. Oh well.
In time I will admit to loving it just not today.
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/3/2010 4:14 PM (GMT -7)   
mtman: good thing your not typing with your mouth . . .! lol. I have gained weight just on the Entocort, would hate to see what pred would do . . .



Symptoms since Jan 2009, Dx UC vs crohns May 2010 but probably small bowel Crohn's dz, biopsies all "normal"

Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin

When the people fear their government, there is tyranny; when the government fears the people, there is liberty. Thomas Jefferson


pursey
New Member


Date Joined Jun 2010
Total Posts : 10
   Posted 7/3/2010 9:59 PM (GMT -7)   
I have been on and off prednisone for years and the symptoms for me go away fairly quickly. My sister is a nurse for a colo-rectal surgeon and he says the faster you can be taken off the better. It's nasty stuff. I am on it now but I have only been back on it for about a month and my Dr. is already slowly taking me off of it. The biggest side effects for me is jaw and feet cramping. Like major charley horses in my jaw. That never seems to completely go away but gets better after I have been off for a while. The worst drug to be on!! Good luck with everything~

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 7/3/2010 11:02 PM (GMT -7)   
thank got tootsie rolls are fat free! i love 'em!
the "plastic skin" just feels and looks "weird"...i can't really describe it- i think the pred alters the look/feel of my skin on my face, neck and chest...sorry i can't be more descriptive.
the mood thing is another one...i've said it before- my wife calls them my ***hole pills...
i took myself down to 20 today...hopefully it keep going in the right direction
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.

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