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The devil - Prednisone

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Posted 6/21/2015 5:06 PM (GMT 0)
i am currently on 25 mg of pred. was originally on 40 for 4 weeks. now tapering at 5 mg a week. ive been doing beautifully. i was under 130 lbs, working out daily, drinking 2L of water a day, watching my sodium... then after ONE night of Chinese food and some candy i woke up with both my menstrual cycle (very early and way more intense than usual) and an extra 7 lbs. my face is huge overnight and i feel so bloated and sore that i can't even move.

why would this happen now while I'm tapering :( what's going on with my body... i hate this disease. even the medication takes away my confidence. people say i should be happy I'm feeling better but they don't understand what prednisone does to you emotionally and physically. i wish someone would try to understand...

sorry for the emotional rant


26 year old female. Currently on...
40 mg of pred beginning. Currently at 25 mg (only 5 more weeks! Yay!)
15 mg methotrexate once a week + folic acid daily, except on methotrexate days. 
Nightly corto enema for two weeks.
Vancomycin x 4 a day until August 4 (contracted cdiff in hospital. Joy.)
Iron. Vitamin D drops. Multivitamin. Bio-K Plus probiotic.

* Last and final remicade infusion was May 6 2015. Starting Entyvio June 24, 2015.

Post Edited (honeybee11) : 6/21/2015 11:11:26 AM (GMT-6)

Posted 6/21/2015 5:30 PM (GMT 0)
yah steroids are very annoying ive been on them for a couple months now and trying to taper
I just saw a dietician who specializes in IBD- she was reccomended by my GI
she said limiting sodium will help with the bloating but there is not much you can do
also too many carbs can cause bloating so try to avoid them in excess
its possible the high fat and salt coupled with the natural bloating tht many people get with their period caused you to get extra bloated
can you exersize a little or are you too weak?
Posted 6/21/2015 6:07 PM (GMT 0)
that definitely makes sense and yeah i exercised extra hard today haha about to go on an hour walk to finish up. you're probably right about the sodium and prednisone effect on top of menstruation...
Posted 6/21/2015 6:11 PM (GMT 0)
Chinese food is filled with salt and MSG. Probably caused major water retention, which can also trigger an early and profuse period in some women.

What are you doing eating Chinese food during a flare? ;)
Posted 6/21/2015 6:16 PM (GMT 0)
haha I'm actually not flaring at the moment so i was so excited to be able to indulge. the prednisone apparently stops flares and then destroys everything else in the process...
Posted 6/21/2015 7:56 PM (GMT 0)
Medrol is a little bit easier to handle than prednisone because your body metabolizes it differently it doesn't make me as anxious and it also doesn't make my appetite as big as prednisone did
But I still have all the other annoying side affects I got from prednisone
Ask your doctor if you can switch
Posted 6/21/2015 8:17 PM (GMT 0)
The moon face and weight gain are caused by water retention which will go away after you tapered off. You shouldn't be worried about that. You should worry about what pred does to your bones. Are you taking your daily calcium?
Posted 6/21/2015 8:24 PM (GMT 0)

Chiron said...
Chinese food is filled with salt and MSG. Probably caused major water retention

And some people are much more sensitive to glutamate (from MSG) than others. I know someone who gets migraines from it.
Posted 6/21/2015 8:28 PM (GMT 0)
Your thread really resonates with me. Prednisone turns me into an anxiety-ridden monster. I become a wild animal in permanent fight-or-flight. Your title is v. accurate. It's like doing a deal with the devil. I would actually prefer to deal with UC flare symptoms than Prednisone.
Posted 6/21/2015 8:47 PM (GMT 0)
what are some of the side effects that most of you are noticing right now?

I don't really notice any current side effects from it. I'm more worried about the long term side effects...ie osteoporosis.

I've been on pred for about 6 months now and know I need to get off of it. I'm waiting for Imuran to start working then I can taper off. But since I've been diagnosed, prednisone seems to be the only thing that keeps me flare free.

I've read that getting enough calcium and lifting weights are good ways to combat the bone thinning effects of pred and I do both of those.
Posted 6/21/2015 10:09 PM (GMT 0)
miestomaga, the side effects I most notice are...

*i am quick to anger and if someone bothers me enough i also get the urge to physically lash out, though i never let myself.
*i get a racing heart usually at night
* its harder for me to cope with stress
* i used to have peaches n cream skin but I've been breaking out in acne
* my periods come closer together and are heavier
*my anxiety is very high and i can cry at the smallest thing
*i am NEVER full. i don't let myself eat as much as i know this drug will let me put away.
* i generally don't notice weight gain or puffiness as i have a system that really helps with it, when i do splurge however my body definitely can fluctuate up and down 5-10 lbs in a matter of days.

however... i have no bloody diarrhea, it's rare i have any pain, i sleep during the night, and i can retain my food. i couldn't do any of these things a month ago.

to keep side effects low i make sure i sleep enough. i drink 2 L of water. one in the morning one before dinner. i eat very healthy and keep to low sugar and low sodium. i exercise daily and do morning yoga as soon as i wake up. i also have an ensure protein plus for breakfast which helps with extra nutrients. doing all this helps with the anxiety, my mood, and any weight / water retention issues. i don't take extra calcium as my dietician suggested i get my calcium from food / dairy.
Posted 6/21/2015 11:34 PM (GMT 0)
I'm having a different experience this time around - the first time, I mostly had bones pain and muscle weakness. All of my muscle tone disappeared overnight and I was so weak. I also didn't have a period for nearly a year afterwards.

I just started back on it a couple of weeks ago - I had a period and it was horrible. Probably the worst cramps that I have ever had - between that and the flare pain I was miserable. Other than that - my sleep is a little rough but I'm getting through it. I am just so hot all the time - I am carrying a little fan with me from room to room. Hahahaha!

I think moderating my diet has helped me control weight and water retention - I'm crossing my fingers I dodge that bullet this time! I did just start taking a calcium supplement as well - I'm kind of nervous to add anything into the mix as I try to get this flare under control, but I worry about my bones.
Posted 6/21/2015 11:45 PM (GMT 0)
I always have it happen where i am doing fantastic when I start it, it's when i get down to like 20mg where i start seeing the awfulness of the drug. Usually, when I am on 40mg, i am sick and i lost a ton of weight and i don't see the side effects at that time. it's not until i've been on it a while that my face gets fat and my body looks bloated :( It sounds like you're doing everything you can, keep it up, I am sure you're just being overcritical of yourself.
Posted 6/22/2015 12:29 AM (GMT 0)
CGK1998 - i had a similar experience. the first time i was on pred absolutely nothing happened except insomnia. so i was still super sick the whole time. I'm sorry things have been so tough on you. honestly if they ever ask me to go on it again i will say no. my new dr is very anti prednisone at least.

notsosicklygirl - that makes sense because when we're initially starting the drug were probably so sick and underweight we don't notice much else.
Posted 6/22/2015 12:21 PM (GMT 0)
Honeybee - I hope you feel better soon too! You will be off of it before you know it and hopefully will never have to do it again. I'm feeling good so far this morning - hey, as long as I can carry my fan around with me I'm all set. :)
Posted 6/22/2015 1:12 PM (GMT 0)
I hope you feel better soon. Prednisone has always made me feel worse. My theory is that when I don't sleep, I get sicker.

Can you ask your doctor about Uceris? It has really helped me. It is a prednisone like drug but it supposedly doesn't release until it hits your colon. The side effects are very minimal compared to pred. I didn't have any of the sleep disturbances when on it.
Posted 6/22/2015 1:13 PM (GMT 0)
I didn't start seeing the moon face until I got to around 25mg/day. I started at 40mg for 2 weeks and then tapered 5mg/wk. I have been cutting way down on sodium and getting plenty exercise but no matter what I do I always get the moon face. The worst part is being on the "devil" drug and still have blood, mucus, etc...that is what I'm going through right now. What is does to my head too just sucks. Angry all the time, yelling for no reason, anxiety, mood swings...the list goes on.
Posted 7/5/2015 5:05 PM (GMT 0)
that sounds terrible, but rest assured the weight is probably water retention (this also causes the moon face) and should shed pretty fast later on.
Posted 7/5/2015 6:38 PM (GMT 0)
I spent months trying to get a diagnosis. Even had a colon resection because that was going to cure. It did not. Made things worse. Four months later when the GO doc called to say uc I was so happy. This is treatable. The month of prednisone was heaven in comparison to the fatigue pain and blood. Still figuring this out but very optimistic. Two Luanda and Endicott. Tapering now. Still have many symptoms but so much better.
Posted 7/5/2015 6:48 PM (GMT 0)
Overnight feel like a new man. Telling my attorney about it made him recommend I watch LIMITLESS and that movie is exactly how I feel in the beginning.

However the aftermath is horrid, complete loss of energy and mental energy, crown falls off - oops you need a root canal, tendon snaps, finger dislocates, plantar fasciitis will not go away.

I really intend to never ever go back on that drug, next time it might kill me. I was already in the ICU from it once.
Posted 7/5/2015 7:11 PM (GMT 0)
It may sound weird but the worst that can happen is a removal of the large colon. Then I'm cured. I can live with a bag. This is not a death sentence. I really pray you reach remission soon. If you do anything, live your life. If you need depends then wear them. Don't let this stop you
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