I was just diagnosed a month ago and now I am on Prednisone. Does everyone get Moon face?

Hello everyone! I am new to all of this UC stuff! I moved from San Diego to Virginia in Sept of 2009. Since then I have had non stop diarrhea! In March of this year I finally was able to get a referral to a GI specialist. I was given a colonoscopy, and he told me that my whole colon is inflamed and that I have ulcers all over my poor colon. He started me off on Lialda but he neglected to tell me that I was suppose to take two pills in the am. I was taking one in the morning and one at night. Two weeks ago he informed me that I was taking the medication wrong. So I began to take it as directed, and he said that he wanted to see me back in two weeks. I went yesterday and he told me that I have lost 11.5 pounds since I got my colonoscopy a month ago. He put me on Prednisone starting at 40 mg once a day for a week then tapers me off for the next 2 1/2 months. I had questions for my doctor but in the midst of asking him a question he gave me a short response and walked out of the room. He didn't say see you in a few weeks or bye or have a nice day. He just got up and left. I had asked him what food I should avoid and he said that there is no set rules but that Diary products might make things worse, but that I could eat Activia.

My question is since I am on Prednisone and today is my second dose of 40 mg will I also get moon face? I have read previous forums and I must say that I am terrified that this will happen to me along with rage and acne and facial hair. My husband jokes that he might go into work with a black eye, but I do not want to be an angry wife! Especially since I have been married for less than a year! Can anyone tell me if moon face is something that everyone gets???? What about that hump that people have said they get???

I am 26 years old
Diagnosed March 2010
Flare up since Sept 2009
Taking 2 Lialda once a day, 40 mg of Prednisone once a day, 4 calcium pills, 6 fish oil pills, 3 iron pills, 2 prenatal vitamins (I'm not pregnant my Dr said they would be good for me).

It's hard not to live with Anxiety when at any moment I am capable of crapping my pants.......

JM21204,

Thank you for your response! You have been on Prednisone for 3 years? What is the longest you have taken Prednisone for? Do you have any suggestions as far as what food to avoid? I have had this flare up for 8 months now.... how fast does it take the Prednisone to work? I am starting a Chemistry class in June and I am panicked because it is a 5 hour class that is 30 minutes from my house. I don't want to have to miss part of lecture because I have to go to the bathroom. Sometimes I take Imodium but it doesn't help me. Do you have any advice? I don't want to have an accident on the way to school or on the way home.

Thank you!

I have never gotten the full moonface BUT people notice that my cheeks fill in a little bit

There are things you can do about the rage and weight gain.  Just be aware that these side effects will come and you can manage it a little better.  The first time I was on pred, I wasn't told about the side effects.  I gained 30 pounds and was VERY irritable.  I've been on it 3 or 4 times since then and I'm able to reduce the weight gain by watching my eating.  I'm also aware of my mood swings and can control them a little bit.  Not all the time, but I try my best.  You're way ahead of where I was by researching what may be in store for you. I was caught off guard.

 

As far as the moon face, I get it everytime and there is nothing I can do.  I once had to get my driver's license renewed during that time and had to live with that picture for 5 years.  It was awful.  It was worth the remission I eventually reached though.

 

 

Yes just to clarify I have been on it for 3 years when I'm flaring, not the entire 3 years. Usually I am never on it for more than 4-6 weeks at a time, so perhaps that has prevented me from getting the moon face and weight gain.

Wow, 8 months is a long time for a flare up! I am sorry you are going through this. I would second some of the advice you have already gotten from others.

Welcome to the forum! You will get tons of qualified and good advice on here. As well as just a virtual shoulder to lean on when needed.

I did not like my side effects but I liked them more than the bleeding/cramping/diarrhea, etc.

I was on prednisone for 5.5 months - tapering from 40, 30 and 20 one week and then continued on 20 for several weeks and then tapering 5 mg. a week!  Slower at the end and once had to go back to 20 mg. for a few days to stop bleeding that returned - it worked!

I had moonface, insomnia, cranky and gained 15 lbs.  I am already obese so that was not fun.

I counteracted with a prescription from my doctor for Xanax for the anxiety and mood changes.  That worked fine and also helped me sleep.

I would take it again if necessary!  I really think you should be trying other medications including rectal before prednisone.  I tried about everything mesalamine and found I could not tolerate it.  But prednisone was like a last resort before biologics!  In the end the prednisnone stopped the bleeding/urgency and firmed my BMs to normal.  Rectal meds healed the last part and I use them about once to twice a week - Cortifoam and Anusol suppositories! (by the way - my skin was so much nicer, long fingernails and arthritis in knees and other joints great while taking prednisone)

ElaineNY

Hi,

I am so sorry to hear about your situation...it totally reminds me of my life 2 yrs ago! I had to decide to get my master's degree online b/c I couldn't even leave the house due to a constant flare.

Regarding the prednisone..... this is a very, very serious drug with serious side effects. It should be taken as a last resort (after all the 5 ASAs are tried, hydrocortisone enemas, etc.).

None of the drugs above (even Remicade) could put my UC in remission. Prednisone was the only thing that allowed me to have an hour or two of living outside of the bathroom. Hence, I found myself dependent on prednisone (40-60 mg.) for 7 months. I was then forced to opt for j-pouch surgery (3 surgeries with the final one in 4 weeks). Either the UC was going to kill me or the prednisone was...

In fact, it was the prednisone damage to my organs that made the j-pouch route have to take 3 surgeries instead of the more common 2. Weaning off the prednisone has left me with excruciating joint pain for the past 3 months and will probably take me up to a year to get out of my system.

Please research all you can on this drug - the good, the bad, and the ugly. Any usage over 4 months is considered long-term. The drug is for emergency situations and should not be considered a maintenance drug by any means...

Best wishes to you as you find a solution to your distress and discomfort. I know how hard it is! Just be encouraged you are not alone in your struggles... it will get better.

Hi Dibajoo, I have been flaring for about a month now too and my diagnosis is similar to yours - my "whole" colon "severely" inflamed (boy was I disappointed to hear it - I was hoping for mild and only 1 side). Luckily, I think I like my GI doctor. He takes his time with me and my husband (I make my husband go to my appts. so I don't miss or forget anything) and he spends time to answer our questions. I'm now on my 2nd week of Prednisone 40 mg a day and 1 week of Asacol 400mg x 10/day. Just like you, I had a lot of concerns about the side effects of Prednisone and still am worrying about the scary things that could happen when I start tapering. The drug does help and the previous comments are right, the benefits outweigh the bad. It made my symptoms better within less than a week. I take all 40mg at 8am every morning (as advised by my pharmacist). So far, I haven't had an issue with weight gain and moon face (knock on wood) but it's only been 2 weeks. The side effects I experience are scratches/wounds seem to take a long time to heal. Insomnia - even when I feel exhausted from the daily grind, I am so wired and have a hard time sleeping at night. I take 1/2 a Xanax after a couple sleepless nights - don't want to rely on it too much. I get jittery and shaky. My muscles feel achy or spasmic sometimes. I experience pee urgency, which is much better than poop urgency =) And I'm breaking out a little and have little bumps on my forehead (thank goodness for good makeup lol). I haven't gained any of the weight I lost since I've been sick even though I'm eating much more and not crapping nearly as much as I was. I'm down to 2-3 small BMs a day. I posted a thread similar to this and I heard getting regular exercise is beneficial mentally and physically. I've been slacking off with this but I'll make sure today I do some stretches and fast walk on the treadmill for 30 minutes. Hope you feel better soon! Hang in there and try to think positive.

wodin said...
Welcome to the forum Dibajoo,

As with UC itself, each of us is different. Prednisone side effects are manifold, and none of them pleasant; and everyone gets different ones to different degrees, and they also seem to be different for different courses of treatment.....

From me - ElaineNY - Even though I said this in another post - I would like to say that I enjoyed some of the side effects very much - nice skin (mine is usually so dry) long fingernails, less arthritis pain and lots of energy to do my housework, etc.  I know these are not really so important but good for me!  Some of these must have to do with my age!

Big sympathies to you... hopefully you'll manage to taper successfully first time you try, in which case you shouldn't get as far as having a moon face. Like others, I got a puffy face but nobody else could notice it. Other than the huge appetite, another thing that affected me was that I felt pred was dampening my sex drive, which was a problem because I was in a new relationship. Obviously having awful D doesn't help the sex drive either, but even once my symptoms had cleared up I still felt it was a problem. Things were completely fine once I managed to get off the pred (except temporary joint pains).

As for your chemistry course... hopefully the pred will work really quickly and you'll be able to attend lectures. Otherwise, I found that provided I had been up for 4 hours or so the D and urgency wasn't quite as bad and I could leave the house.

Thank you so much to everyone that answered my post! It is so wonderful to have the support of people who are also going through the same thing! My husband is wonderful and supports me but to have people that know what I am feeling is such a relief!!!! My doctor just went from prescribing me Lialda to Prednisone. I asked him if there was anything else that he could prescribe and he said that he would if the Prednisone did not work. He said the next meds in line had more risky side effects. I feel like he is not the best doctor, but now that I have started day two on the Prednisone I can't stop taking it. I am thinking about talking to my GP to see what else I can do. I have Tricare (Military healthcare) and I had to fight to get a referral outside of the Military facility because I couldn't get the Military facility to work around my school schedule. I don't like my GI, he doesn't answer my questions and I feel like he is always rushing out of the room to talk to the next patient.

Dibajoo said...
AMK77

I live in Northern Virginia too. I live 30 miles from DC.

Cool! I live in Sterling. I see a GI in Reston. Who do you see?