Prednisone Questions

Introduction:

I’m Jessica, a teenager with ulcerative colitis. Currently doing very well and just trying to get my life back on track from an awful flare!

My Symptoms:

Currently besides side effects from medicine I am symptom free! It’s great!

My Story:

Hi everyone!

I have written a story on this website once before when I was first diagnosed with UC, the title I believe was: “really scared, lots of questions, new to colitis!” I have more questions about prednisone and eating now so I was hoping that making this would hopefully help me because whenever I search my questions online I can never find the answers to them or they all vary to different amounts of medications and such!

So here is the medicine I’m currently taking:

-10mg prednisone (started at 50, went down to 40 but had to go back up to 50 and ever since then I have successfully weaned down 5mgs every Monday and will in less than 2 weeks be completely off this stuff!)
– 3200mg asacol (I’ll be taking this for the next 2-3 years)
-30mg prevacid( I’ll be taking this until I’m completely off prednisone!)
I’m also taking some vitamins:
-2000 IU’s of vitamin D3
– materna (does not say how many MG’s or anything, but I take one pill of the centrum brand and it’s also the prenatal kind that usually pregnant women take to make sure they have enough vitamins)
-500mcgs or vitamin B12
– 65mgs of iron
-1mg –USP of folic acid
So, I have some questions that I’ve been hoping that someone could please help me with, particualry on prednisone.
I, like many have experienced the side effects of prednisone like moon face and weight gain. So my summer has been unlike most of my friends, I don’t hangout with anyone, I don’t go out, I just stay home and stay alone whenever possible because I’m just too embarrassed to see anyone anymore because I absolutely HATE the way I look! I’m happy that i’m out of my flare and into remission right now, but I need some help with these questions:

1. Right now, i’m taking 15mgs of pred and I’m due to start with 10 on the 30th! BUT I have not seen my weight decrease, in fact this I’m currently at my heaviest!! When do the extra pounds come off?!

2. My moon face actually has gone down a little bit (unlike my stomach sadly) but it still is very round and I still have a double chin , how long does it take to completely go away?

3. Is it possible to lose weight while on prednisone? I’ve been dieting to lose weight and I try to exercise but I have pretty bad joint pain thanks to pred now so it’s really hard sometimes, and I can’t seem to lose ANYTHING! Last week I noticed I was eating so little I was practically starving myself to lose weight ( I realized I’m crazy and am back to eating healthy again) but even then I didn’t lose not even 1 pound… why is this happening?! I’m about 5 feet and currently 122 pounds! I’m normally 110ish, but being so short, it’s a bit awkward with those extra 12 pounds ALL in my belly and waist area..!
4. Besides the recent diet to try to lose weight, I have really not been avoid the major “no no foods” for colitis. So YES, I eat bread and pasta and dairy! AND (knock on wood ) I haven’t had any cramping or any other reaction to eating these foods, so my question is… is it because I’m currently taking prednisone? Like does it hid the reactions I would otherwise have? So I guess I’m really asking when you guys are on pred, do you find that you can eat whatever really? I’m hoping that I’m just lucky with this because the only foods I avoid are fried foods, stuff like lunchmeats, and spicy foods, but that’s it! Since I’m almost off pred, I’ve been wondering if my journey of all the foods I love like dairy is coming to an end or not!

5. Oh, and this one isn’t about prednisone its actually about asacol, since i have to take it for about 2-3 years, does this medicine have any bad side effects on anyone here?

So thank you for reading and listening to my story and thank you in advance for any help with these questions! (:

Where I’d Like to be in 1 year:

Hopefully still symptom free, off prednisone and enjoying my summer next year! I’d like to also hopefully have my side effects from the pred completly gone by then for sure!

Colitis Medications I’ve tried:

I can say me and prednisone have a love/hate relationship. I love it because it definitely helped me and I’m so thankful for that because that flare I had in the hospital was AWFUL and did not seem to be going away until we started this drug. So thank you for that prednisone!

Although, I hate it because of the awful side effects, It makes me cry when I look at myself in the mirror now… It makes me depressed when I can’t wear my favourite outfit anymore because it doesn’t fit!.. It makes me cry again when i see that my face looks like a whale and I just don’t think I look good whatsoever! I haven’t been hanging out with many people because I’m embarrassed for them to look at me now! :( I know, I’ve been complaining about this a lot and I’m sorry but it’s so hard, this has majorly affected my life so far! I’m a teenager, so I don’t need another insecurity on me right?

written by Jessica

submitted in the colitis venting area









moon face, prednisone, side effects

22 Responses to Prednisone Questions

  1. Jan Zigbe August 5, 2012 at 9:01 am #

    You are relying too much on medicine. Try the SCD or GAPS diets. Even if these diets don’t cure you, you will be able to cut down on meds.
    Another thing try Sulphasalazine instead of asacol. It really helped me when I made the switch before diet ‘cured’ me.

  2. Jessica August 5, 2012 at 9:56 am #

    I just thought of another question that i’ll hopfully get some advice on…

    Im going on vacation for a week soon and I will be completely off prednisone by that time.. I’m worried if I catch a flare what will I do?! I told my GI doc about this worry and he said to “think postive” (if you guys have read my last story/comments you know I don’t like my GI doc because of things like this) and he said he will not provide me with any back up medicine for the trip just in case. The vacation is also a cruise and I’ve never been on one so I don’t know if i get sea sick!!
    Just a bit worried and wanted to see what you guys would say! Oh and my GI doctor also said that this disease does not go downhill like crazy in 7 days…. which I think hes wrong but I can’t say forsure because I havn’t been diagnosed for too long but from what I remember this only takes like a day or two to start up being pretty bad.. any insight on this?

  3. Tom from Northampton
    Tom August 5, 2012 at 10:37 am #

    Hi Jessica

    Good to hear you are currently in remission.

    Im currently on 20mg of Pred so cant answer question 1 or 2 yet but hope to find out soon when i taper down to 0mg like you.

    Ive been on pred for 5 weeks now and have been feeling great up until a week ago after tapering down by 5mg a week. I, like you have been enjoying eating whatever i like since i started pred, but to be honest have never really had problems with any specific foods in the past. Ive now been prescribed 6MP to deal with the UC symptoms that seem to be creeping back since going from 30mg to 25mg and my Dr doesnt want me on Pred long term due to the side affects i have been getting. Insatiable hunger and putting on a bit of weight, joint pain etc.

    I know this doesnt count for much but try not too worry about what other people think of you. Especially since the symptoms are due to medication and nothing you can control. Besides which you will be off them soon and in my experience the side effects do pass once you stop taking it.

    Good luck, keep us posted!

    Tom

  4. Steve August 5, 2012 at 9:38 pm #

    Hi Jessica…I wouldn’t like your GI either. :) While I understand his point—you can’t stop steroids then start them. It can do damage to your body that can really hurt you—it wouldn’t have hurt to extend your use of prednisone taper to cover an extra week. That said, my mom is sick with colitis(so am I) but she goes on cruises often. From what I know she never has issues, and as far as getting sea sick, that wouldn’t affect your intestines…but if you do get sea sick and your colitis does act up, be sure to keep drinking some water and try to rest. It will help if you are seeing inflammation. I would also suggest being aware of and avoiding known triggers that have bothered you in the past. Things like milk, soda, or whatever you know you can’t handle well. Personally, I try to go as natural as possible when eating…avoiding refined sugars and breads. More processed usually means more sick. And just be mindful of how your body feels. If you are feeling uneasy, literally pay attention to how you are breathing. Slow and deep and think about something that relaxes you. Your nerves are tied right to your digestive system…it is the first system to be shut down during fight or flight…so controlling your nerves will help you feel better. Once you get on the cruise, I am sure you will get the lay of the land and love it…:). Let us know how everything goes? Steve

  5. Zach Cortez August 5, 2012 at 9:51 pm #

    My advice is to get off prednisone as fast as possible. I have always been symptom free when I’m on it. But as soon as I get off I start slowly getting back into a flare up. Granted Asacol does help a lot with staying out of a flare up. I’m 18 and I did 4 years off and on of the whole heavy drug scene before I got off of it all and decided to go a more homeopathic route, I’v been gluten free and dairy free for 8 months now and it has really helped me. A LOT! Symptom free and full of energy. I guess I’m saying to explore your options as you go on. Everyones UC is different and for me, dietary changes helped me the most.

  6. Jennifer August 6, 2012 at 7:19 am #

    Agree with Steve… certain foods cause inflammation in the body… and colitis is basically a lot of inflamed tissue. The goal is to decrease inflammation (which is what the prednisone is doing.) What creates inflammation? Gluten, dairy, caffeine, salt, refined sugar, alcohol, fried foods.

    I have cut all of these out, although I do still eat carbs (white rice, gluten free bread, sweet potatoes, etc.). My weakness is corn chips, which I’ll still eat on occasion. I’ve also added in two anti-inflammatories, boswellia and astaxanthin. I’m currently decreasing my dosage of prednisone as well and with these changes I’ve finally been able to go from 40 mg to 20 mg, although yesterday morning I forgot to take my prednisone and around 10 am I had a bit of blood in the stool… so I”m not free and clear yet. But I do credit diet and supplements to help the process.

    The other thing I cut out is anything that would aggravate the colon: whole grains, beans, fresh veggies, etc. Anything with a lot of insoluble fiber. This has been a HUGE help. I suspect I had some symptoms yesterday because I tried eating beans the night before.

    So… yes, diet plays a huge role. If you really want to be off the meds and not have a big relapse on your cruise, please consider that what you put in your body has a direct impact on your health.

    Be well!

    • Steve August 6, 2012 at 8:39 pm #

      Do you follow the SCD Jennifer? I can’re remember if you said it the other day, but I know you did mention diet changes. If you do, what is a typical day like as far as meals for you? That is if you don’t mind me asking. Have a good day!

  7. Catherine August 6, 2012 at 11:36 am #

    My daughter also had weight gain and the moonface for a year. She finally had a coletomy and got off the steriods. She tried not to let the way she looked affect her social life. Her friends understood she looked the way she did because of medication. I’m sure your friends will understand, too. She did have 2 wardrobes; prednisone and normal. She made sure her prednisone wardrobe included cute clothes, too. It took months for the prednisone weight to come off, but it did. Try to be patient! And, Please don’t isolate yourself from your friends- they can help you through this! I wish you all the best.

    • Jessica August 6, 2012 at 4:17 pm #

      Thanks for the comment Catherine! Did your daughter have to diet/excersize to get the pred weight off or did it slowly just go away by itself? I’ve tried to be patient with the weight by since tapering im currently at my biggest weight, I thought the weight would slowly start to come down as I tapered down on the pred, so thats why I was getting worried!

      goodluck to you and your daughter as well (:

  8. UC Family Boy
    Uc family boy August 6, 2012 at 2:47 pm #

    You want to feel part of the world and it is hard when you have UC. I am recently off Prednisone and got the full wack of side effects. Thankfully the acne was on my back and not on my face!! Um, I ate so much whilst on this drug because well it was one of its affects so it wasn’t until I saw an old health picture of me did I feel down about this stage I am dealing with in my life. I found exercise was a great way to work off them extra pounds and drink plenty of water…and I mean plenty of water. Moon face is due to water retention so drinking water is good on several accounts. There is no miracle solution to loss the weight you have put on – swimming I found burns the most calories. Atkins diet introduce is worth trying but you must also do the proposed diet after this period than just the intro.
    I take asacol and I don’t think I have any side effects. set some goals with where you want to be at a stage- for example when you finally come off the prednisone where do you want to be…
    Have you had a full scope? Do you know the extant of UC you have? This might help plan

  9. Jessica August 6, 2012 at 4:13 pm #

    Thank you everyone soo much for all your comments, they have been very helpful!

    I have no updates, im still doing well in remission, enjoying the same foods! Today I start with 5mgs of prednisone as well! This will be my last week on pred, can’t wait!

    • Steve August 6, 2012 at 8:34 pm #

      You asked about weight. Heck, I ate like a horse on prednisone. The funny thing was, I didn’t notice it at first, but I really did. I suppose I was also really active so it never stuck around, but by that thought, any extra weight gained on prednisone should come off on its own, especially if you were eating more while on steroids like most do as Catherine suggested.

      I hope you do not see any major changes when you go off the prednisone as far as symptoms. I did…but I suspect it was due to the medication the doctor wanted me to try. My symptoms got progressively worse as he upped the dose 3 times. Finally I made sure it was listening when I said how bad things were. Once off, the symptoms vanished all but a little which was far easier to manage. You did say you were eating the same foods…in a way I am slightly envious :P…but just be careful once off the prednisone. As Jennifer said, it cuts down on the inflammation that will return if you eat the things that cause the inflammation. I could go into why that happens here…but then I would be ranting. :) All I know is a cruise is one of the last places I would want to feel like crap so you better have fun and feel good!!!

      Have fun on your cruise.

      • Steve August 6, 2012 at 9:27 pm #

        So I read the rest of your questions…hope you don’t mind me answering them.

        1 and 2—The weight/moon face will go away when you are done taking the prednisone. It is water retention plus for whatever reason that I cannot remember, predisone makes most eat more than they normally would…sick with UC or not. It is not just because we stop showing symptoms so we eat everything in sight…but I did this once or twice while on pred. O:)

        3. While I suppose it is possible, you’re like a feather to begin with so the excess eating will be hard to overcome and a fair amount of that 12 lbs is water weight. Hard to make that go away on a medication like prednisone…not worth the health risk that would come with it, especially with someone suffering from UC.

        4. Yes, the prednisone is likely hiding the inflammation you otherwise would probably have. That doesn’t mean the day you stop taking it that your symptoms are going to magically reappear at their worst. It will take some time and may not come at all if the Asacol works for you. I ate anything on the steroids but I knew the prednisone was doing just as you said…keeping my symptoms at bay. Otherwise, I would have eaten more carefully.

        5. I was put on Asacol and read up on it when I saw my symptoms worsen. Read some scary things. I had unreal cramps, bleeding, mucus, etc. I immediately notified my doctor and after that dove more into alternative ways to be UC free. Why? Well, I assumed a specialist who studied specifically to treat diseases like this might be able to tell me more about it. He said a few things that got me but this was the kicker, “No one really knows what causes it” then also added, “but we know food does not cause it.” I admit I was just starting college to become a teacher and by no means a doctor but that statement struck a cord. I’ve never really bought into the whole medicine idea ever since, especially to treat diseases like Crohn’s and UC. With what I have learned, the very nature of UC and digestive illnesses—meaning the reason your body makes your bowels seemingly hate you—is to cleanse itself and remove toxins. So if the body enters UC to try to make itself better…why would I add more toxins to my body to cure the UC? I liken it to putting a gallon of milk outside on a hot summer day. Most would find the smell just sickening let alone the taste…why? The body has the ability to recognize the bad pathogens present in spoiled milk. Same reason most people gag around the smell of rotten foods/meat. It is a survival measure.

        lol. Have a good day everyone and please forgive my rants. I truly don’t mean anything offensive to those of you who take a different path or those who do well on the medicines. I have just seen plenty of people who were so bad they give into the medicines and surgeries without changing things they can control like diet only to still not be where they want to be…in some cases worse. The human body has great powers…too often we subdue those very cool abilities without realizing it.

        • Bev August 7, 2012 at 6:59 am #

          Forgive your rants, Steve??? LOL!!!

          But they make so much sense!!

          You do not rant. You’ve just been through the UC gamut, that’s all. Shout it from the rooftops, my friend!

          All the meds just made me sicker, as well. I, too, am on the natural path, and will endeavor to stay on it. Thank goodness.

          Cheers,
          Bev:)

          • Steve August 7, 2012 at 9:16 am #

            Thanks Bev. lol. I know…but some people may see it as preaching and I do not want to come off that way. Not too long ago, I worked for someone who liked to say, “Steve thinks he is smarter than the doctors.” I didn’t like that(I wanted to tell him off and explain everything I go through and why I feel like yes, I might know more but that is a long story) so I made a point to do as my doctor prescribed just to prove it to myself. Long story short, a few weeks later the few mile trip to work was nearly impossible and I was told by my doctor that I should not be working if I was bleeding that much. It was from the medicine he insisted I try against my better judgement. I know a lot and I have studied a lot pertaining to UC causes, nutrition, human physiology, etc…and yes, been through it all. But I don’t want others to be turned off by my strong emotions about this condition. So when there are more rants, I hope people know that I am just trying to share what I have gained in my experiences so that maybe I can help someone not go through hell or end up in a bad spot they can’t get out of. It is a lot more than the doctors I have had experience are willing to do. Just hope people understand. :)

  10. Catherine August 6, 2012 at 7:17 pm #

    Hi Jessica. My daughter didn’t diet or exercise to get the prednisone weight off. She definitely wasn’t eating as much once she was off. The weight will come off on its own, but it does take time. You will get back to your normal weight eventually. Don’t wait until then to have some fun!!

  11. Jessica August 9, 2012 at 9:12 am #

    WOW steve! Honestly, thank you so much for taking the time to write your comments. They are very very helpful! No need to apologize for “ranting” because those are very helpful comments you made!

    Thank you so much everyone for reading and replying to my questions I feel like I have a much better understanding for them now!

    As for keeping you guys posted like you have said, theres not much… except yesterday I noticed a strech mark on my thigh… It got me very upset because well it would get anyone upset! But why am I getting strech marks now, once im almost done and over with teh prednisone?! I thought it was supposed to get better while you were getting off the pred not worse for weight! My mom said that she got her strech marks once she started losing weight after her pregnancy so maybe I’ll start losing weight now too but I havn’t been.. any insight on this?

    Thanks again everyone :) Goodluck to you all!

    • Steve August 9, 2012 at 10:57 am #

      This a bit of odd information for me to know but stretch marks happen when the dermis(second layer of the skin) is torn due to stretching. So as time goes, it will make sense if they show up as you lose weight, but if you keep your skin healthy and eat well(giving your body the best chance to keep your skin healthy/repair it), the marks will become insignificant over time. That would include getting a little sun but not tanning…crazy women :)…and other things. Sometimes certain essential oils can help as well. As a guy speaking to a woman, I’d urge you not to worry over them. Women care about them far more than men do. Now, if you refuse to shower, we might have an issue. :)

      If you meant losing weight, you will. The best advice I can offer there is drink lots of water and don’t be afraid to weight train. If you drink soda/juices(store bought—fresh made at home is great for you)/sports drinks, etc…you’re adding a lot of calories for nothing. One 8 ounce sugary drink a day would amount to 14.6 pounds of excess calories to burn over a year. A great reason to dilute store bought juices 50/50 with water or just stick to water and add some lemon or lime juice. About weight training/working out…many women are afraid to weight train because they think they will bulk up like a guy. It is impossible unless you are a woman with extraordinary testosterone levels so don’t be afraid. Plus, toning up with weight lifting will accomplish three things. One…you’ll burn calories while working out—something you’ll get with cardio too. Two…you’ll burn more calories with more muscles while just going through your day(sitting still or otherwise)—fat doesn’t need sustenance, muscles do. And three. Women also make one other common mistake and choose to diet without exercising. Without exercise, the body will cut both fat and muscle if all we do is diet. While it seems harmless, it will actually trigger the body to go into a survival mode—your brain will want food no matter how bad it is for you as it just wants to live. Thus will make meal choices and cravings much harder than they would be otherwise. So don’t forget to exercise if you diet…and don’t get discouraged with numbers on a scale. Muscle weighs more than fat…pay more attention to how you feel and be patient for your looks to change. They will if you stick with it.

      I warned everyone :) I like to rant but I hope it helps. My mom has gotten into pretty good shape at over 50 so it can be done—hers was after a heart attack and while also having UC so anyone can do it. I myself am trying to get in better shape as I write this because I miss it. It was not possible when I had a low red blood cell count and couldn’t go up stairs without getting winded—red blood cells carry oxygen around the body. Best of luck to everyone. Steve

      • Jessica August 9, 2012 at 6:09 pm #

        Thank you once again Steve! I almost feel bad making you take all the time to give me all this information but honestly It’s amazing to have someone liek you providing all of it to me it makes me feel a whole lot better! :)

        Thank you for all the tips on teh strech marks too! I drink on average about 8-9 tall glasses of water a day, which in measuring cups is 16-18 cups of water a day! Im a water freak haha! I can never get sick of a nice cold glass of water! And I rarley drink anything else, maybe I’ll have a coffee or soda once a week, maybe twice but thats all!

        As for working out, the only thing I do is jog for 30 minutes a coupld times a week! Its not much but its better than nothing I suppose! Oh and while im on weight loss I heard green tea is amazing for losing weight… but I was curious if it’s okay to drink it with my UC I’ve read both good and bad about drinking green tea with colitis. Green tea is an anti-inflammatory so I think it would benefit the UC but I’ve heard from some people to stay away for some reason so I don’t really know what to do here! :(

        • Steve August 9, 2012 at 8:49 pm #

          lol. I don’t mind sharing…all I had to do was spend ten minutes writing. If you are having a rough day and want to see some motivation check out ShayLoss on YouTube. :) I am not sure about the tea, but given my own experiences…I’d be torn. What I mean is, when I first was diagnosed, I would drink a weak warm tea with a little honey. It tended to mellow things out, but it depends. Too strong of a tea will actually act just like coffee does in the body…as a diuretic(alcohol is one too), forcing out water. So I would say if you are buying and making it yourself—so you can control the strength and the ingredients that go in it—go for it. See how you feel and go from there. I would avoid store bought or already bottled teas, as their benefits are nothing compared to fresh made stuff and who knows what else you’ll be consuming. Small amounts of weak tea are also allowed on the SCD diet…but use honey as a sweetener and not refined sugar. As always you can do whatever, but that would be my take.

          Oh no…a short message.:) Steve

  12. Catherine August 9, 2012 at 7:10 pm #

    Hi Jessica. Yeah- I forgot about the stretch marks. My daughter also got stretch marks on her legs. She swore she wouldn’t wear shorts this summer, but it’s been too hot not to. I noticed the marks are fading and definitely less noticeable. She used Mederma for stretch marks- maybe that helped. It’s worth a try. Good luck. I wish you all the best

  13. Joe H
    Joe November 23, 2013 at 11:32 am #

    Lots of good info on this page … thumbs up to all that posted!
    About prednisone … Had my first flare Oct 2012 and after 2 months of meds that didn’t work went on pred. I did notice I was hungry all the time, but since I had lost 20 pounds during the flare the weight gain only brought me back to my normal weight. After about four months of normal BMs I got my second flare up and the GI doc put me through the same treatments. I’m on Pred. now and down to 15 grams, with a little more than a week to go until I’m off of it. I decided to try the SCD diet and started it last week. Between the pred and the carb withdrawal I’m spending most of my time eating! :) Workouts at a gym and no carbs are keeping my weight down.
    I didn’t have any noticeable side effects except the hunger the first time I used pred. but this time I developed a few pimples, something I haven’t had since my teen years, I’m 67 and now I get acne!
    I see many complain of joint pain, at my age I already had joint pain the pred probably help relieve it! I also consume lots of ginger and turmeric which have anti-inflammatory properties.

    Found this on line about the acne:
    Question: Can Steroids (Such As Prednisone) Cause Acne?
    Answer: Yes, some people who take steroids such as prednisone can develop a type of acne called “steroid acne.” Steroids are a common type of medication that are used to treat many inflammatory conditions, including inflammatory bowel disease (IBD).

    Acne is often thought of as a problem for adolescents, but steroid acne can happen to anyone taking steroids, regardless of their age. Steroid acne can appear on the face, chest, or back.

    Steroid acne will abate when the steroid drug is tapered down and discontinued, but treatment can be started while still taking the drug.
    Accutane (isotretinoin) is usually not recommended for treating acne in people with IBD because, though rarely, it may trigger symptoms such as diarrhea and rectal bleeding. Instead, topical cleansers and anti-acne agents such as benzoyl peroxide are recommended as first-line therapy. Oral antibiotics or antifungals might also be used for treatment.

    If you have concerns about acne that develops during prednisone therapy, consult your gastroenterologist or a dermatologist. Remember that even though acne, especially on the face, can be difficult to live with, the acne will clear up when you taper down off the steroids.

    I praying the SCD diet keeps me flare free for a long time or cures me permanently.
    Peace & Blessings To All, Joe

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