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Whats the longest you've been on prednisone?

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Posted 4/13/2013 1:02 AM (GMT 0)
My longest has been to around 4 months. My worst side effects were weight gain, stretch marks( which i still have) and the moon face. I gained around 40 pounds on prednisone.

How about you?
Posted 4/13/2013 1:26 AM (GMT 0)
3.5 months.

had 40 lb water weight gain but came off in 2-3 days once i dropped to 35 mg.

insomnia, anxiety, shakiness, profuse sweating, neuropathy, costochondritis, stretch marks, moon face, osteopenia, inability to walk/lift arms/bathe myself.

will NEVER take again.
Posted 4/13/2013 1:38 AM (GMT 0)
Started in september last year. Still on it but down to 5mg. Moon face with a massive increase in appetite. Insomnia. Lash out at people for no reason. Euphoria.
Posted 4/13/2013 1:46 AM (GMT 0)
"will NEVER take again."

DITTO !

Posted 4/13/2013 2:01 AM (GMT 0)

bananagirl said...
3.5 months.

had 40 lb water weight gain but came off in 2-3 days once i dropped to 35 mg.

insomnia, anxiety, shakiness, profuse sweating, neuropathy, costochondritis, stretch marks, moon face, osteopenia, inability to walk/lift arms/bathe myself.

will NEVER take again.

inability to walk/lift arms? how did you function on prednisone :|
Posted 4/13/2013 2:15 AM (GMT 0)
dontscopeme, i didn't function on my own at all. i used a walker for a few months until i gained my strength back. i was basically stationed on the living room couch and my mom stayed on the other couch helping me do things. my stepdad would carry me up the steps to take a bath. getting out of the tub was the WORST because i couldn't bend my ankles/knees from all the water retention. i felt like they would rip open. my sister was really helpful though- she'd brush my hair, make me food, and massage my feet. i have a REALLY great family and wouldn't have been able to do anything without them.

the best way i can describe the quick weight gain is imagining you have to carry around an extra half of your body weight when you're so used to being a certain weight. the first day i was on prednisone, i had been 90 lbs. in 2 days, i was 130 lbs. my body didn't have time to adjust to all the weight so quickly so that's why i couldn't move my limbs. i think my body was in shock. i asked my GI doctor and internal medicine doctor for diuretics but they assured me that water retention was normal. but since i couldn't walk, i got blood thinners injected into my gut a few times a day.

Posted 4/13/2013 2:29 AM (GMT 0)
wow that's crazy. i thought the neuropathy would have been tied into it but it was completely weight gain related? i'm glad you never got back on it. right now I sometimes feel like I can't move but instead its the opposite, I have to keep moving. the restlessness is insane
Posted 4/13/2013 2:37 AM (GMT 0)
This is my third time on it. I'm currently on 30 mg and 9 mg of entocort.(oral) Current symptoms i have are the moon face, increased appetite, and not sure if this is one of the side effects but usually in the afternoon i just have no energy and go to sleep. Also have acne and i'm losing my hair :( I also forgot to mention the 2nd time i was on prednisone (which is the 4 months i was on them) I went from 120 to 160 pounds (a lot of it being also water weight, especially in my thighs) and bananagirl i'm so sorry you had to go through that during prednisone. I can not imagine how much pain you were in and how horrible it was to be in a walker. I also remember while i was on prednisone was the only way i could even be able to go to school last year since other meds just dont like to work on me for some reason. But i would always get sick like colds and such.
Posted 4/13/2013 2:54 AM (GMT 0)
dontscopeme, my neuropathy started when i was on prednisone. it's never went away and i have it in both of my feet. i saw a neurologist and he said there's nerve damage from having no circulation in my limbs.

colitis, yeah, it's a tough drug. i wish i could say the benefits outweigh the risks but it didn't help my UC either. i always wondered if my dose was too high and that's why i was so affected by it. i started at 40 mg and stayed on that for a little over a month.
Posted 4/13/2013 2:56 AM (GMT 0)
Oh gosh, I was on it for nearly a year. It was horrible. I gained a ton of weight. I still haven't gotten my figure back, don't think I ever will.
Posted 4/13/2013 2:25 PM (GMT 0)
I was on it a year with only a month off in between. Finally got off it Jan 30, 2013. I've lost the 20+ pounds it put on me, but I still have joint pain. My body loved prednisone and has really rebelled not taking it.
Posted 4/13/2013 2:29 PM (GMT 0)
you are a true freak of nature 46 :-)
Posted 4/13/2013 3:29 PM (GMT 0)
Once for 6 weeks and once for 6 months. Been off of it for 2 months or so. As my GI says, everyday off Pred is a good day.

I gained 5-10 pounds, night sweats on higher doses, anxiety, some acne. I'm noticing joint pains now.

46 - where is your joint pain and how would you describe it?
Posted 4/13/2013 3:34 PM (GMT 0)
i was on it for just under 5 months. had some weight gain - which was actually GOOD because i got back up to my normal weight. had a bit of facial hair growth which sucked, but i just bleached it & after being off prednisone for a while it went away on its own. the worst was that it seemed to make me VERY anxious/obsessive when i finally got down to 7.5mg/5mg & was getting off of it.

occasionally i had muscle cramps in my legs, but eating bananas & getting extra potassium seemed to help with this. i would also see more hair than usual coming out in the mornings when i brushed my hair, but nothing to the point where i was like "omg i'm going bald!!!"
Posted 4/13/2013 3:56 PM (GMT 0)

Hi, I am new here to this forum.  I was diagnosed in October after a major flare, and finally hospitalized after 4 weeks, for 14 days. Up until that time it was diagnosed as "IBS".  I was losing so much blood, and became dehydrated as well.  Also developed a DVT during the whole ordeal.   I was put on prednisone for 3 1/2 months.  It worked wonderfully, gained 25lbs though(although over the 6 weeks I was at my worst, I lost that much) and the lovely moon face.  The worst was the sleeplessness.  No matter what time I would go to bed, I was wide awake by 3:30-4am every day.  I would try hard to stay in bed until 5am, but then I would have to get up as I was starving.  Irritability was a big deal too.  I was hell to live with, I think my husband figured he brought the wrong woman home from the hospital.  Joint pain started when I was down to 7.5mg and got worse with each reduction.  I still feel a little creaky after being off of it for two months now.

Posted 4/13/2013 5:14 PM (GMT 0)
Yikes. I feel sorry for you all for taking that. Was it ever worth it?
Posted 4/13/2013 7:53 PM (GMT 0)
On and off for almost year and half (3 courses each year) and then 6 month stretch. All side effects, plus 45lbs. Still losing that weight after 8 months.
Posted 4/13/2013 9:16 PM (GMT 0)

Sibby said...
Yikes. I feel sorry for you all for taking that. Was it ever worth it?

for me personally it was worth it. while i am still not 100% normal & there were some negative side effects, overall i feel like i finally have my life back! i was barely able to function before going on prednisone.
Posted 4/13/2013 11:35 PM (GMT 0)
I feel like its worth it. I've been flaring since November and tried almost everything and nothing has helped, even Remicade.. which is why i'm not going back to remicade. Only thing i'm getting from remicade are a lump/bump which is growing on my thigh which i still need to get checked out
Posted 4/14/2013 12:39 AM (GMT 0)
Been on it since last June, so almost 11 months. Began at 40mg & was up to 60mg at one point. Currently 5mg, am going off of it as I am now steroid dependent - I will never go on it again.

Effects - hot flashes, night sweats, losing lots of hair, skin on my fingers splitting open very easily and not healing up, zero to psycho***** in 1.2 seconds, loss of sex drive, insomnia, humungous appetite, weight gain, vision script doubled, face becoming very flush, thrush & yeast infections every month, skin peeling in my mouth, difficulty concentrating ......
Posted 4/14/2013 12:43 AM (GMT 0)
On and off for almost 2 straight years. The worst side effects are: moon face, insomnia, reflux pain and knee pain.
Posted 4/14/2013 3:32 PM (GMT 0)
I had been on for the past 4 years to some degree. High dose 20 mg/day. (my doc and I came to an agreement that he would put me on 20 but we would increase if needs be) I had been weaned off a few times during that 4 year period, but never for long.
I too, said, I would never take it again, but when it was the only thing that helped me a few years back I conceeded. I gained weight but I was also losing so much fluids from the colitis is balanced out.
Short story is predisone is a hard drug to take for any period of time. Side effects go outside of the weight gain issue. I am not longer on predisoned because I just had surgery for this horrible disease. My thoughts are with all my commrades that sturggle with UC.
Posted 4/15/2013 1:03 PM (GMT 0)
I've been on pred since the beginning of January 2013, and I won't be even tapering until I see my GI at the end of this month. Since effects are: acne, insomnia, low blood pressure (heart racing at rest), sometimes a little anxious.
Posted 4/15/2013 1:11 PM (GMT 0)
2 months; no side effects except maybe my hands falling asleep really easily when they're above heart level (not sure if it's linked or not).
Posted 4/15/2013 5:49 PM (GMT 0)
Soystud while on 40, I had it going on. I could multitask, no fatigue, and no joint pain. Only side effects I had we're weight gain, Moonface, and somewhat manic.

MRM-joint pain includes hands- thumbs in particular, back pain, jaw pain, joint always felt like they needed to pop. Fatigue has been my biggest withdrawal symptom.

After feeling like crap for weeks, spent time in ER yesterday only to be put back on prednisone starting today.
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