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?

Question #3:

Did You Experience Side Effects From Prednisone / Prednisolone?

Question #4:

Did you get Moonface from Prednisone/ Prednisolone?

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:

 

Question #8:

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

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.