Ulcerative Colitis Tips


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Prednisone-Prednisolone Use Side Effects Survey Results

Prednisone Survey Results from 42 participants in the UC Prednisone Survey.

Thank you very much to everyone from the Facebook IHAVEUC group who responded to this survey and participated.  As many of us have realized, taking prednisone/prednisolone for the treatment of Ulcerative Colitis Symptoms is quite common.  I had no idea though how many of you would be kind enough to share a few minutes of your time filling out this survey.  My hope is that this survey will allow many of you to see what others have dealt with, or are currently dealing with in terms of side effects, and effectiveness of Prednisone/Prednisolone in terms of UC. I myself did not fill out the survey, but I can tell you all now that many of the side effects that are listed below I felt myself.  And as much as I may try to deny it, a picture of my face while I was on the drug compared to a picture of my face now, is quite different.  Definitely a bit of moon-face for me while I was taking it.  Thank you again to all 42 people who filled out the questions, and I hope that thousands of people will find the information you submitted beneficial in some way.  Below is all the data, and I have broken it down into several different charts where it was easy to do so.

Question 1 & 2:

How Long Have you been Diagnosed with Ulcerative Colitis and What Percent of the Time Have you used Prednisone since your Diagnosis?

colitis treatment prednisone prednisolone use

Question #3:

Did You Experience Side Effects From Prednisone / Prednisolone?

side effects from Prednisone patient graph

Question #4:

Did you get Moonface from Prednisone/ Prednisolone?

Getting Moonface from Prednisone patient Study data

Question 5:

If you experienced Side Effects from the Prednisone/Prednisolone, what were they?

(Below each bullet point is a response from individual people who submitted their prednisone side effects.  39 of 42 people submitted side effects from prednisone/prednisolone, and 3 people skipped this question.)

  • At the peak of my dosage, 60 mg twice a day, I started to get really bad headaches. Then I started to hair in places I shouldn’t being a woman. I was told it was because the prednisone was throwing off my thyroid but my thyroid wasn’t bad enough that I should have been on medicine for it. So I just had to learn to deal with the spots of hair on my chin. Also my hair on my head started to get brittle and started to break and fall out. I had to get special shampoo and conditioner to help.I gained a lot of weight, 57 lbs. Then to make the weight worse I didn’t gain it in even areas, I started to gain weight in my back (love handles) but I would have one above my hip and another near my ribs. Besides everything else I think the worse was the feeling like I always wanted to cry. Then trying to explain to someone I’m not really sad but my medicine makes my cry. Being on Prednisone definitely makes you feel like an outcast to your own self.
  • I had moon face, weight gain, emotional swings, night sweats and sleep problems.
  • At the time i got moon face, could not sleep and had hallucinations. Now i have osteoporosis which they blame on the prednisone i took in my 20s.
  • I feel like my vision is off. and of course my glucose is elevated
  • I had roid rage, was very angry and moody. I imagined things and got paranoid.
  • moodiness (anxiety, anger, hyper)
    acne
    weight gain/munchies
    Lack of sleep AND too much sleep
    bad dreams
  • weight gain
    insomnia (when on high doses, only getting up to 2 hours of sleep per night, usually less)
    always restless
    depression and irrational, suicidal thoughts. I’ve suffered depression for other reasons all my life, but this was different. I wanted to die so bad that I had to be hospitalized, but I couldn’t even work out why. (apparently it was a side affect of Pred.)
    bruising and other injuries took much longer to heal, too.
  • Joint pain, insomnia, irritability, hair loss
  • Too many to list, I’m sorry, it would take me hours to list them all. I pretty much blame it for anything and everything when I am on it.
  • Increased appetite, mood swings, insomnia, increase in energy, rapid heart
  • Weight gain, 20 pounds in a month. Mood swings, pretty much turned a mellow guy into an asshole. High blood pressure.
  • Insomnia
    High blood sugars
    Moon face
    Hair loss
  • extremely hungry and facial hair growth (not fun for a female)
  • Anger
    Sweating
    Headaches
    Blurry vision
    Moon face
  • Puffy face, insomnia, hyped, mood swings, increased appetite, blood sugar fluctuations, ie low blood sugar, hypoglycemia, changes in white blood cell count and glucose, sodium, fatigue, joint pains — these are all pronounced at higher dose
  • Acne on face and back, sore joints bones etc. unable to sleep, sweating all the time nightsweats, agitation, wanting to strangle people. Weight gain
  • It was a long time ago, but I think I made me really hungry and I gained weight!
  • Kept me awake all night. Skin was thin. Moods got worse. Sugar levels in my system were high.
  • Facial hair got darker and thicker, acne, weight gain
  • Puffiness and weight gain
  • Mood swings, weight gain,moon face
  • Bounding heart rate, irritability, mood swings, increased appetite, weight gain, insomnia
  • Weight gain, insomnia, insanity, panic attacks, inability to tolerate other human beings, acne, weird hair growth.
  • night sweats, not sleep well, hair loss, moonface, red face
  • I think that these are all from the prednisone:
    Fatigue
    Trouble Sleeping
    Muscle Weakness and Muscle Cramps
    Scalp Hair Loss
    Bruise very easily
    Slow to heal
    Weight Gain
    Moon Face
    Acne
    Irregular Menstrual Period
    Increased Blood Pressure
    Anxiety and Irritability
    Joint Pain and Stiffness
    Backache
  • Weight gain. Unbelievable hunger. I also believe it caused me to have a kidney stone!!
  • Mood swings, moon face, puffy neck, low energy levels.
  • Insomnia
    Mood swings
    Anxiousness
    Weight gain (especially around stomach )
  • Bra lard, bingo wings, love handles for weight gain and turning into a pepperoni pizza (moon face and spots)… Well, a hyperactive pizza morelike.
  • Headaches, joint aches, puffy face, weight gain, mood swings, and irritability.
  • Hungry all the time but other than that, I felt great – arthritis joint pain went away. However, I did also experience bone loss.
  • Depression
    Weight gain
    Spots
  • Excessive weight gain, moon face, mood swings, bone weakening, retaining water, and salt cravings.
  • In addition to “moonface”, I also put weight on in the stomach area and am a bit more irritable than normal. I have had some joint pain here and there.
  • Prednisone: Moon face, depression, weight gain of 20 lbs, very achy joints, chills, night sweats, insomnia, acne, big mood swings, hungry all the time, not motivated to do anything, dry eyes, loss of hair, teeth ached, cold sweats, and yellowing of my eyes
  • Extremely bloated! Moonface, swollen from head to toe. Increase in appetite, even though I did not WANT to eat anything.
  • Makes me crazy! Don’t even feel like myself. Jittery, can’t sleep, mood swings, muscle aches, joint aches, MAJOR acne, hair growth, blurred vision
  • Bad sleep patterns, bad skin, weight gain, mood swings, shakiness, muscle weakness, moon belly, weak ribs, feelings of personality change, lack of patience, need I say more!!!
  • Some damage to bone structure (weakening).

Question #6:

If you experienced Side Effects from the Prednisone/Prednisolone, did they go away?

(39 of 42 people submitted responses to this question regarding the prednisone/prednisolone side effects going away)

  • Mostly everything went away, it took a long time to loose the “I want to eat feeling”. I do still have to deal with the new hair growth.
  • Yes, eventually.
  • still on it
  • yes because I am no longer on the drug.
  • yes
  • no
  • as I weaned the dose down, the affects lessened. Once off it, they eventually went away completely.
  • Yes, they did go away
  • Yes
  • Went away
  • After some time yes.
  • Still on it from when I started
  • facial hair stayed!
  • Side effects are still here
  • The side-effects lessened with decrease in dosage from the high dose, but they didn’t go away entirely.
  • Bones still crack, hips hurt, joint pain, others went away
  • yes
  • yes
  • All but the facial hair
  • went away after discontinuing
  • They have slowly gone away
  • Yes they went away when dose was under 10- 15mg
  • All went away except I seem to have a permanent increase in acne and my skin texture is weird.
  • yes
  • Still there, still trying to taper off the prednisone
  • Yes they went away when I got off it
  • All take time to go away, think the mood swings can be mind over matter.
  • yes, but it has been hard to lose the belly fat
  • Still waiting.
  • Yes.
  • No – still have the bone loss
  • eventually, once tablets were stopped
  • after the prednisone the side affects went a way but some still “haunt me” for example I gaine 50 pounds and am still trying to lose it. I went from underweight to over weight and am now at the top of normal.
  • Yes. “Moonface” and extra weight does go away after some time. As for the irritability, I guess it just depends.
  • All of my side effects went away after 2-3 months of being off of prednisone
  • yes, eventually
  • NEVER
  • Most gone now, as tapering continues
  • No idea. Not sure.

Question # 7:

Was the Prednisone/Prednisolone Effective In Treating Your Ulcerative Colitis:

All 42 people from the survey responded to this question.

25 people said the prednisone/prednisolone was effective in treating their Colitis

13 people said “kinda was but not really

4 people said no

Below is the Pie Chart of the Prednisone/Prednisolone Effectiveness:

 

effectiveness of prednisone/prednisolone

Question #8:

If your doctor recommened Prednisone/Prednisolone to you again, would you take it?

Taking Prednisone again

Question #9:

Advice you can offer to others with UC who are taking or need to take Prednisone/Prednisolone:

  • Be prepared… have a buddy who knows the symptoms and is willing to help you through them. Make sure you really like your doctor because one doctor might tell you, you NEED the prednisone. Where another might help you find the right plan to come off of it because of all the side effects that you’ll get.
  • Weigh out your options before taking a medication like prednisone. It is a serious drug that causes a lot of nasty, nasty side effects and you are going to have to determine if it is right for you.
  • Understand the side effects, weigh the risks, ask questions.
  • There are absolutely side effects associated with steroids. But I would rather have a moonface than spend my day passing mucus and blood. Vanity needs to take a back seat to health. Prednisone is an amazing drug for fast relief. It is something our bodies produce on their own anyway. Sometimes we just need a bit more help.
  • Only take it if you really need to. It is easy to become addicted to. Taper off it slowly or you will be in bad shape all over again.
  • Get off it Now…
  • Not really, I’m trying to figure it out for myself… I’m sick of being on it
  • I think everyone’s experiences differ slightly with this medication. Not everyone has a bad reaction. I did, and a 10 year old friend of mine had similar side effects. It is not normal for a happy child like him to suddenly have such dark and irrational thoughts.
    My advice would be to avoid it, but then, I havnt tried any other medications and they may also have bad side affects.
    On the other hand… Prednisolone definitely helped me into remission!
  • No, it sucks. I wouldn’t wish it on my worst enemy. But it’s effective! If you tend to gain weight on it like me, watch your carb intake. I crave them when i’m on the ‘zone.
  • Take it as early as possible to avoid insomnia. Read and follow Dr.Asa Andrews Empowering your health anti inflammatory diet.
  • Try to get off the medication as fast as possible, I thought it was a miracle drug at first. I could work long hours, eat pretty much anything and have the occasional beer. Then came the weight gain, mood swings and food cravings. Coming off prednisone was hands down one of the hardest most painful things I have done in my life.
  • It worked when other meds didn’t so even though the side effects are nasty it was better then bloody diarrhea all day long
  • Beware of the side-effects! Try to be sure not to take a higher dose than you need to, and taper off very slowly when you are trying to get off of it.
  • Only take it if you absolutely need to, shocked when my doc told me people always ask for it must be the energy boost. And if your taking it use a calcium supplement.
  • Hang in there. It’s a horrible drug but it is a miracle drug too. Get as much support from loved ones when things are really getting to you. It’s how I got through it .
  • If your UC is steroid dependent like mine, take notice at what dosage your symptoms return
  • Be patient and follow Drs orders.
  • Don’t expect a miracle and expect weight gain and self confidence issues
  • If you tweak your diet and get some exercise, you can do pred without weight gain. Only eat carbs in the form of fruits and veggies, plain yogurt, and hard cheeses…lots of lean protein, avoid sodium, and drink lots of water.
  • Try to avoid it if you can, but take it if you have to. It has been more effective than anything else at stopping my bleeding.
  • Be cautious
  • Keep positive and active throughout taking them to keep energy levels up. Taking them doesn’t make you put on weight but will increase your appetite so you CAN control it! :)
  • You should take it, I didn’t want to but had no choice, I feel great for taking it now and kinda missed them too!
  • Take them as the doctor prescribes, make sure to step down. If your side effects are really bad, let your Doctor know immediately.
  • Don’t stay on it too long.
  • The pills taste nasty! Take them with a juice, apple juice works best, or milk. While on prenisone go on a low sodium diet and have a nutritionist set up a specific diet that will meet your calorie needs. DO NOT OVER EAT.
  • My advice is if you need it take it. In my experience prednisone is the only med that worked the best and the fastest in the treatment of my uc. I know that it is bad for you long term, but if will help you get over a rough spot then I say, “Pass the pred!” The side effects that I experienced were trivial compared with the benefit.
  • Research as much as you can about this drug and know that everyone reacts differently to it. I experienced the worst of the worst, not everyone goes through this. I have a love/hate relationship with prednisone. I really do everything in my power to avoid going on it, and I have learned how to manage my UC without being dependent on quick fix drugs. Don’t let other peoples horror stories stop you from taking this and getting out of a flare up. But, taper it down correctly and try not to be on it for a long term period!
  • I’ve only had to take it two times when my flares were really bad thankfully. I weaned myself off earlier than the doctors suggested. I did not want to take it at all because of the effects, so I only take it when I HAVE to to help get everything under control. If it helps to get things under control, I would say it might be worth it.
  • Go ahead and book an apt with a psychologist!
  • Bear with it, it works, ask your family/friends to be very tolerant of changes in mood, and tell people not to say “you look well” meaning fat, by explaining the medication has given you temporary weight gain!
  • Take it if absolutely necessary — and for no longer than necessary.

 

That concludes the prednisone survey.  Feel free to leave any comments below in the comment section, and be sure to sign up way up top for our newsletter so you won’t miss out on the next survey.

 




prednisolone, prednisone

16 Responses to Prednisone-Prednisolone Use Side Effects Survey Results

  1. Helen September 25, 2011 at 11:55 am #

    This was really good to read as it’s nice to know you’re not alone. Any chance you can do an Azathioprine/Mercaptopurine6 survey too?

    • Adam
      Adam September 25, 2011 at 12:07 pm #

      Hey There Helen,

      Thank you so much for your feedback. I really appreciate it. It took me several hours over a few days, but that’s way cool if even 1 person can make use of it.

      Can we do one for Azathioprine/Mercap……UM…..HECK YES we can.

      I just started a new one for Remicade (which was one of the drugs I tried) and once that one is finished, assuming it goes well and works properly, I’ll setup one up for Azathioprine/6MP.

      If you have any questions that you feel would be good ones to ask, especially if it can be a multiple choice set of answers, feel free to email me at ihaveuc@ihaveuc.com

      Take care, and thanks so much for your comment,
      adam

      • Stephanie B
        Stephanie June 30, 2014 at 6:10 am #

        Hi Adam, I’m just wondering if you ever did get a chance to run the Azathioprine survey. I can’t seem to find it on here. I’ve been on Colazal for a year and in remission until about three months ago. I caught rotavirus from the kids I take care of and was sent into a flare. From what I’ve heard this is a terrible drug. My doctor is very insistent on switching me to this drug and I’m terrified. While I have the chance, thank-you, thank-you, thank-you for this web sight. You and so many other people on here have helped me stay healthy and lets face it …… sane through these past three years since being diagnosed. Thank-you hardly seems enough!!

        • Adam
          Adam June 30, 2014 at 9:58 am #

          Hi Stephanie,

          I hope the flare can turn itself around with your help in the next few days so you can get back on the remission train. And thank you so much for your super nice comments regarding the site. On behalf of all the tens of thousands who use the site each week, its much appreciated.

          Now for your question. No, I have not setup or completed an Azathioprine survey yet. But, I think its a good idea. Surveys are actually very time consuming for me to create and compile and publish results of. But I do love doing them since so many people participate in them and find them useful.

          What would be very helpful for me is if you could do me a favor and email me the questions you’d like to appear on the survey. my email is adam @ you know what .com. When you are thinking of questions for this survey, you should read through previous surveys here: http://www.ihaveuc.com/category/ulcerative-colitis-survey-data/

          and that should give you a feel for the surveys already here and the questions…

          One thing you should realize is that I’m still a few days out on compiling the Exercise survey’s data(there were over 500 people from the newsletter who participated, and over 100 pictures sent in too…so that’s going to be 10-15 hours of my time compiling and getting it ready to be published…) So I guess what I’m saying is it would be several days (if not a week or two) before I could get an aza survey going. (and i’m actually moving overseas to Europe in 8 days…so anyways…that for sure is going to get my schedule/clock all wacked out…:)) But for sure can be done. Maybe just a medication review would be better, and easier for me to get up quicker. You let me know, but thanks for asking, and wishing you the best, Adam

          • Stephanie B
            Stephanie July 2, 2014 at 2:03 pm #

            Hi Adam, I would be more than happy to help out with the survey! You sound like you have a lot on your plate right now though. I’ll work on those questions but PLEASE take your time. I just found out today that my doctor is leaving his practice in a month and a half!!! Ahhh…. I am really freaked out by this medication and just don’t feel comfortable switching right before my doctor is leaving me. He really feels as though this is going to be the next step even with the new doc. It will be another two to three months before I can even get in to see him though. Have a safe trip and again there is no hurry!!! Thank-you, and Happy Moving!!!

  2. Rebeka
    Rebeka November 17, 2011 at 8:10 pm #

    So THAT’s why I have night sweats… Great, another thing I learned from joining this site. I definitely recognize some of my own side effects.

  3. Joanna February 16, 2012 at 7:42 pm #

    This is fantastic data, thank you!!! Looking forward to the other surveys and truly enjoy your website!

    Great info and support for someone diagnosed just last month!!!

    Thanks again!

    • Adam
      Adam February 17, 2012 at 1:20 am #

      Hi Joanna,
      On behalf of all the users of the site, thank you very much. The newest survey coming out about probiotic use should be very interesting too. Welcome to the site, and I hope your uc isn’t acting up too much right now. There’s a lot of super cool people here and I hope you get to interact with many of them.

      • slingshot February 23, 2012 at 2:54 pm #

        I have been on Pred two times since I got my first flare 2008.

        I can say that if I would not have taken these two cures I’d probably have a bad BMI and be totally malnourished. In the end I felt like nothing helped, as I was in such a bad shape, the pred actually didn’t give me any symptoms other than that I feel strengthened. That is compared to taking no medicine.

        The pred helped me cure my flares twice, and with no or little side effects. I always took the pills first thing in the morning, to have the natural balance of cortisone level (high in the morning). I also was very strict with following the doctors 1 week de-escalation pattern:
        7days x 8pills (40mg)
        7days x 6pills (30mg)
        7days x 4pills (20mg)
        7days x 3pills (15mg)
        7days x 2pills (10mg)
        7days x 1pill (5mg)

        and you are out and cured, depending on how bad shape you’re in you probably enter in different stages. In combination I started taking 5-ASA twice daily.

  4. Jessica from Ohio
    Jessica June 11, 2012 at 3:52 pm #

    started prednisone 5/31/12
    14 days x 8 pills= 40
    14 days x 7 pills= 35
    14 days x 6 pills= 30….. til I get to one pill a day. (two week tappering).

    Only after taking prednisone for 2 days I seen real poop in the toilet! YAYYYY! and was only in there for #2 2-3 times a day.

    OH but on day 9 ….. BAM! I experienced the severe side effects of the drug and felt I was going to die.

    Difficulty sleeping; feeling of a whirling motion; increased sweating; indigestion; mood changes; nervousness.

    Severe allergic reactions: difficulty breathing; tightness in the chest; face, appetite loss; black, tarry stools; changes in menstrual periods; depression; diarrhea; dizziness; exaggerated sense of well-being; fever; general body discomfort; headache; increased pressure in the eye; joint or muscle pain; mood swings; muscle weakness; personality changes; prolonged sore throat, cold, or fever; severe nausea ; weakness; weight loss.
    emotional instability and irritability, euphoria, hallucinations, headache, impaired cognition, incidence of severe psychiatric symptoms,blurred vision. Hypertension.

  5. Dave Crossley
    Dave December 26, 2012 at 12:10 pm #

    Hi everyone. First post here. Firstly a massive thanks to Adam for such an amazing site, I am on here every day now reading all the comments and I’ve learnt so much.
    I am currently experiencing a pretty depressing Chrismas whilst everyone around me indulges I have been in bed. I had to relent and start taking prednisolone foam on Friday ( i have taken it once before and it worked for me first time around so I’m praying it will do the same again. I didn’t notice any of these side effects when i first took it, I take it you guys are talking about the pills?
    I also take folic acid, pro biotics, fish oils, manuka honey, vitamin d and chew fennel seeds after eating, I was doing fine on these things until just before xmas when that cheeky bugger UC decided to come visit again :(
    which i didn’t have to use it but diet alone doesn’t seem to be sorting me out – i try to have as good a diet as possible but slip up here and there cos everyone else in my house eats yummy nice foods that I find I want to eat too once I smell and see them haha
    anyhow festive love to you all, would love to engage with some other folks who have what I have as I have never done that before

  6. Dave Crossley
    Dave December 26, 2012 at 12:11 pm #

    * wish i didn’t have to use it not which sorry

  7. Elizabeth March 1, 2013 at 6:57 am #

    Just wanted to say thanks for the info. My youngest was put on it for a month, and now (at the the three week mark) we noticed he is bloated, moody and always hungry. I was getting worried as nither the doctor nor the pharmacist eplained any of this to me. It was so good to hear about others’ experiences to understand what he is going through. He is only 7 so he is not great at articulating exactly what it is like for him. At least I know now and can understand.
    Thanks again,
    Elizabeth

  8. bron August 18, 2013 at 9:44 pm #

    My Husband is taking a high and long dose of Prednisone and has become moody and short tempered. He has had depression before and is quite highly strung. He has never accepted his UC diagnosis and keeps a lot to himself. Two weeks ago he told me he wants to separate after 20 years of being together (13 married) we have 3 children and he just isnt himself. I am sure it is the Prednisone affecting him. Im just not sure what to do. He wont go and see anyone about it.

  9. Laura August 19, 2013 at 12:43 am #

    Thank you for that, I could literally have written that myself, I have every one of those symptoms and glad to know I’m not alone!

  10. Jo April 8, 2014 at 3:38 pm #

    Found this extremely helpful my mum is tapering from 60mg to 10mg prednisalone for reactive arthritis caused by strep throat infection 5 months ago, she hasn’t been well at all anyone else know about reactive? Would love any information on this as it’s so confusing & upsetting
    Please email me would love to hear of any helpful info xx

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