https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sun, 12 Apr 2026 11:13:24 +0000 https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841478 Thu, 23 Aug 2018 23:16:49 +0000 beetlepwr 2841478@https://boards.hellobee.com/ <p>i made an account just to say - hang in there!<br /> crohn's disease here - diagnosed almost 15yrs ago as a teenager. we tried tons of meds, remicade included, and after a long hospitalization i ended up sans small intestine and had an ostomy bag for a year.</p> <p>i was about 90lbs when i was discharged and on prednisone, among other drugs. i looked like a cartoon! like my little stick body couldn't hold up my moon-faced pumpkin head. i went back to school for a couple weeks with my moon cheeks to finish the year and take finals.</p> <p>just take it one day at a time and know better days are ahead of you. crohn's really took a toll on me, emotionally and physically. i had a slim chance of survival even with the surgery. it affected my family as they watched me struggle through it. i was mad at the world that i lived in a hospital for months, had unlucky complications (bronchitis, collapsed lung from a misread xray, woke up after surgery to no pain meds with a nurse that didn't know how to use my picc line), and left after all that with a bag of poo stuck to me.</p> <p>6 months later i was travelling with my fam, back in school sports, and planning a trip to europe. i have some bad days, but haven't flared since my initial diagnosis. my husband loves that i am a much tougher cookie than most of the world can see.</p> <p>you can and will get through this, and you are not alone! </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841451 Thu, 23 Aug 2018 20:45:51 +0000 ladybee 2841451@https://boards.hellobee.com/ <p>Different disease but I’m in a similar boat. I was diagnosed with MS almost a year ago. I was on prednisone from September (1 week of IV steroids then oral) till March. I put on 20 pounds, slept horrible, was an emotional train wreck, and felt horrible about myself. I went on an all non processed diet to lose the weight. And now I pretty much refuse to take steroids again unless I can’t walk. </p> <p>I also go every 4 weeks for an IV medication. Same thing where I sit for 3 hours and it makes me so depressed. It reminds me that the rest of my life is going to include an illness. I hate it </p> <p>No advice, just hugs. You aren’t alone. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841436 Thu, 23 Aug 2018 20:07:28 +0000 Anagram 2841436@https://boards.hellobee.com/ <p>@SweetiePie: ahhhhh. Prednisone. I was on it last year for 3 months and it was AWFUL. Eventually my doctor switched me to prednislone, which is similar but he said some people react to one or the other better, so since o was having so many side effects, he wanted to try the other one, and prednilisone was so much better for me.</p> <p>I had major insomnia, moon face, weight gain, and generally feeling just not myself mentally. I felt much better once I was off it, but I had to stay on it a while to get my autoimmune stuff under control until other meds could kick in.</p> <p>You just have to hang in there. And vent here as much as you want--I did!! I have old threads about my horrible health last year and sl the craziness my body was experiencing. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841343 Thu, 23 Aug 2018 13:18:13 +0000 psw27 2841343@https://boards.hellobee.com/ <p>I'm so sorry you're going through this. I don't have any experience but I wanted to recommend a blog I read - she's a fitness blogger but she has UC and she's written a ton about her experience, treatment, what's worked, how she stays positive, etc. I'm sure if you emailed with her she would be a good resource! :heart: </p> <p><a href="https://carrotsncake.com/category/colitis" rel="nofollow">https://carrotsncake.com/category/colitis</a> </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841313 Thu, 23 Aug 2018 11:50:53 +0000 SweetiePie 2841313@https://boards.hellobee.com/ <p>@mrsbubbletea: thank you ❤️ </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841307 Thu, 23 Aug 2018 11:36:23 +0000 mrsbubbletea 2841307@https://boards.hellobee.com/ <p>@SweetiePie: we do see a fair amount, teenage boys and girls. But I think you would definitely know what to look out for and having your pediatrician ready to address your concerns with an GI symptoms that pop up, so that helps. And who knows with all the research and advances if they do get it, the treatment may be even better and easier to keep in remission! Hang in there and send me a message whenever you want! </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841303 Thu, 23 Aug 2018 11:28:04 +0000 SweetiePie 2841303@https://boards.hellobee.com/ <p>@mrsbubbletea: oh yes, sorry, I knew what you meant I guess I was just rambling and sharing what I’ve been told. I’ve had so much info put into my brain in the last 6 weeks or so and actually haven’t talked about it much so when you seemed a little familiar with UC/autoimmune diseases and Remicade I just started blurting it all out 🤣<br /> And today he explicitly said he doesn’t want me to be on Remicade forever so then I started talking about that without a segue. Haha. </p> <p>I know you’ve said before you’re a pediatric nurse. Do you see many kids with UC? Of course that’s another huge concern weighing on me. I’m not the usual demographic but now I have 2 boys and I know it tends to crop up in teenage boys. I’m praying it skips them but man, it weighs on me. I told my pediatrician when I saw her for our 6mo’s well visit last week. And she is now aware and that alone makes me feel better. She told me what they can do to keep an eye out for it proactively. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841294 Thu, 23 Aug 2018 11:02:55 +0000 mrsbubbletea 2841294@https://boards.hellobee.com/ <p>@SweetiePie: 2-3 more weeks is great! </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841293 Thu, 23 Aug 2018 11:02:13 +0000 mrsbubbletea 2841293@https://boards.hellobee.com/ <p>@SweetiePie: that is so wonderful to have such great doctors! Remicaide is awesome, I more meant in the future If it stops working you’ll have options. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841292 Thu, 23 Aug 2018 10:59:17 +0000 SweetiePie 2841292@https://boards.hellobee.com/ <p>@Rocker2014: THANK YOU this helps so much. You’re exactly right - just having an approximate timeline is like “ok I can do that. I can get there”. When it’s a chronic illness that will NEVER end and I’m just learning about it now, I need to grab onto anything finite I can.<br /> And the camel hump 🐪🤦🏻‍♀️ yep have that too. But I feel like I can hide that a bit more with clothes. The moon face is just so “here I am!”<br /> My doc commented on it today too. It’s been about a month since I saw him last and he said “wow quite a difference”. BUT he said it’s a good thing. He said when he saw me last my colon was still healing and the prednisone wasn’t absorbing as much. Now it is absorbing so much better after my first Remicade Infusion despite tapering. But he said it will get better much soon and the goal is only 2-3 more weeks on Prednisone, tapering along the way. Today he dropped me to one morning dose of 20mg. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841291 Thu, 23 Aug 2018 10:51:11 +0000 SweetiePie 2841291@https://boards.hellobee.com/ <p>@crazydoglady: thank you! </p> <p>@mrsbubbletea: thanks for this.<br /> And yes, they’re doing a ton of research and there are newer drugs. Remicade is just the old faithful because it’s been around a while and it’s fast acting.<br /> There are others like humira that are an injection vs IV Infusion but they take a lot longer to work so my doc would like to try it later after I’ve been on Remicade a while and we can try to transition from one to the other. I was just so sick and didn’t have 6 months to wait for humira to work. He didn’t want me to be on prednisone that long.<br /> I’m also very lucky to be at one of the best IBD research centers in the world. When I get sick of NYC I just remind myself how lucky I am to be around all of these hospitals. And my doc is seriously top notch. </p> <p>I just had a follow up with him and feel better. Not awesome but better. He right away asked how I’m doing emotionally and mentally and when I told him he said he asked because it’s very common to have feelings of sadness at this stage of my journey (full effects of prednisone, 2nd Infusion, feeling good UC symptom wise and being frustrated that I still don’t feel like myself). I made anther appt with the therapist, but I can’t see her till 9/7 which also happens to be my bday! But I saw her briefly to say hello and she also gave me a nice boost. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841288 Thu, 23 Aug 2018 10:38:30 +0000 Rocker2014 2841288@https://boards.hellobee.com/ <p>I'm so sorry you're going through this - sending you :heart: </p> <p>I've been on and off prednisone for much of my life due to severe asthma, and have totally been where you are - both dosage/taper wise and mood wise. I get all the side effects too - though rage is a big one for me (Just ask DH, lol!). The thing that keeps me going during the long tapers is that now I know that for me the moon face is pretty much always gone just about exactly 7 days after my final dose. I get the 'camel hump' fluid retention in my neck/shoulders pretty bad too and it is the same timeline for it to go away, and mood symptoms are done around day 3 post-taper. From what I've read/heard, others have had roughly the same timelines. For some reason, knowing exactly how long until this part of the illness process is over is extremely helpful to me - while I know I'll never be cured, taking things in small chunks that I can predict allows me to have a sense of at least some control over the process.</p> <p>Hang in there, it WILL get better. It never feels that way when I'm taking it, but I can always look back after and be proud I made it through. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841281 Thu, 23 Aug 2018 10:00:49 +0000 mrsbubbletea 2841281@https://boards.hellobee.com/ <p>@SweetiePie: I am so sorry you are going through this and I really am glad you can be proactive about your mental health. Whatever you need to do, make it a priority! Really glad your treatment is working :heart: </p> <p>And for what it’s worth, I see a lot of patients with UC and Crohn’s at work, and from what I remember, in the 10 years I’ve been working there the medications have changed a lot (aside from the good old prednisone) and it seems like autoimmune diseases are a big research area. So if by some chance the remicaide stops working, hopefully there is another treatment they can try! </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841261 Thu, 23 Aug 2018 08:47:43 +0000 crazydoglady 2841261@https://boards.hellobee.com/ <p>I just wanted to offer my support and hugs. :heart: </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841258 Thu, 23 Aug 2018 08:28:57 +0000 snarkybiochemist 2841258@https://boards.hellobee.com/ <p>@SweetiePie: I don't remember dieting but I was 20 and had the metabolism to go with it. I also have very few pictures from that time period because I hated the moon face. I do think it went away fairly quickly after the end of my taper and might have even started when I was at 10mg every other day. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841245 Thu, 23 Aug 2018 07:24:19 +0000 Ajsmommy 2841245@https://boards.hellobee.com/ <p>My DH was on prednisone for a very long time and large doses due to a an autoimmune disease. It was terrible when he tried to wean off of it and it had be done so slowly bc if not he felt just terrible and had awful withdrawal symptoms and couldn't even do anything. He had very bad side affects as you describe, moon face, hunger, anxiety, rage and insomnia. It was not a fun time. He eventually weaned off and his symptoms went away..... hang in there!! It's tough!!! hugs!! </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841244 Thu, 23 Aug 2018 07:20:12 +0000 SweetiePie 2841244@https://boards.hellobee.com/ <p>@snarkybiochemist: Yes I will follow his schedule to a T. My very first day of taper I was MISERABLE and that was following his instructions. I don’t want to mess with that at all. I’ve read so much about how important it is. </p> <p>How long does it take for the moon face to go away? And did you have to do anything or did it just go away on it’s own when you were off the prednisone? I worry that I’ll have to diet or do something to make it go away and that will add stress. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841239 Thu, 23 Aug 2018 06:58:52 +0000 snarkybiochemist 2841239@https://boards.hellobee.com/ <p>@SweetiePie: thankfully I could nap in college because I never found a great solution for the messed up sleep.<br /> Last bit of advice follow your doctor's taper schedule it's really important at the end even if in your head you are thinking I'm at 5 or 10mg every other day what difference could it really make, your body needs to learn to live with out the added steroid. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841233 Thu, 23 Aug 2018 06:35:52 +0000 SweetiePie 2841233@https://boards.hellobee.com/ <p>@LCTBQE: @jhd: thank you both 🤗 </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841232 Thu, 23 Aug 2018 06:34:43 +0000 SweetiePie 2841232@https://boards.hellobee.com/ <p>@snarkybiochemist: Thank you for sharing your experience. I can’t imagine 6 months, and in college to boot. When all is said and done I will be on it for a total of 2-3 months depending on the taper. And that is already pretty dreadful.<br /> I think that as long as the Remicade continues to work I will be ok without the prednisone. I’ll need it if I have a flare or if something happens and the Remicade is no longer an option (develop antibodies or something). It’s used to get things under control quickly. I’m so grateful for it, because other drugs would have taken MONTHS to work and it would have played out very differently. But now that I’m feeling ok disease wise, it’s hard not to notice all the bad prednisone side effects.<br /> And yeah, insomnia is really high up there next to moon face. I can’t seem to fall asleep before 1-2am even if I’m exhausted from the day. And I I wake up at night i can’t fall back asleep. Unisom seems to help a little but I can’t always take it. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841229 Thu, 23 Aug 2018 06:20:13 +0000 jhd 2841229@https://boards.hellobee.com/ <p>@SweetiePie: I’m sorry you are going through this. :heart: :heart: </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841228 Thu, 23 Aug 2018 05:49:24 +0000 LCTBQE 2841228@https://boards.hellobee.com/ <p>@SweetiePie: no experience, just :heart: :heart: </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841200 Wed, 22 Aug 2018 20:23:21 +0000 snarkybiochemist 2841200@https://boards.hellobee.com/ <p>Prednisone, while a wonder drug for a lot of conditions has miserable side effects. I was on it for about 6 months in college (what a time for moon face) Initially my dose was 50-60mg and by the end I had tapered down to 10 mg every other day. The moon face didn't really go away until I was off the prednisone, but does not usually come back unless I am on it for more than a week and more then 50mg. Prednisone really affects my sleep cycles even now if I have to go on it for a few days and makes me super super hungry. I also get a metallic taste in my mouth. Drinking lots of water helps with some of the hunger and metallic taste but I always found I needed really strong flavors to totally mask it while eating. Talk to your doctor about calcium as prednisone can increase likelihood of developing osteoporosis or bone density loss. I take predinose for asthma so its a totally different disease but I can understand the side effects and the sadness that comes from not feeling right. Hopefully your doctors can get you under control and prednisone won't be a first line treatment. I am glad you have a therapist to talk to about all of this, it helps to process a lifetime diagnosis. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841198 Wed, 22 Aug 2018 20:18:40 +0000 periwinklebee 2841198@https://boards.hellobee.com/ <p>@SweetiePie: :heart: I'm really sorry - so, so hoping things start improving soon :heart: </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841196 Wed, 22 Aug 2018 20:13:55 +0000 SweetiePie 2841196@https://boards.hellobee.com/ <p>@periwinklebee: thank you so much for saying this. I do plan on mentioning it again to my therapist. I’ve felt way more down than usual. I cry a lot. But I’m also tapering and there are added side effects to tapering (basically like withdrawal symptoms). So I’ve been wondering if it’s that.<br /> UC is the “sibling” disease of Chrons. I’m almost 37 and this came on so quickly and severely, it’s certainly been hard emotionally, regardless of the prednisone. I have heard anecdotally that a lot of people with new IBD diagnosis do need some medicinal intervention for anxiety and depression. </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841195 Wed, 22 Aug 2018 20:12:11 +0000 periwinklebee 2841195@https://boards.hellobee.com/ <p>I'm really sorry :heart: </p> <p>I don't have any direct experience, and don't know if this is helpful, but wanted to share that when I was a kid my dad took Prednisone for crohn's. I don't really know the details because my mom tried to hide them from us, but I know it gave him very severe clinical depression. Not saying that's what is happening, as even absent depression chronic illness absolutely sucks, but just wanted to encourage you to talk it over with your doctor if you don't feel emotionally better soon, as it can be a very serious side effect of Prednisone :heart: </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841193 Wed, 22 Aug 2018 19:59:12 +0000 Jennibenni 2841193@https://boards.hellobee.com/ <p>I’m so sorry! This sounds really hard. I don’t have any insight on prednisone but I can relate to not seeing “yourself” in the mirror. I just don’t even recognize myself postpartum and I know hard that is for me without dealing with the added stresses of an illness. I’m sorry! </p> https://boards.hellobee.com/topic/experience-with-longer-term-prednisone-im-really-down-right-now#post-2841191 Wed, 22 Aug 2018 19:47:05 +0000 SweetiePie 2841191@https://boards.hellobee.com/ <p>I was very recently diagnosed with Ulcerative Colitis. It’s been a whirlwind and I’m finally feeling like I can catch my breath. </p> <p>The initial course of treatment to get the UC under control is Prednisone. I was on a fairly high dose (60mg per day) for about a month. And now I am tapering off. I’m down to 30mg per day. But it’s a slow process. </p> <p>Prednisone is an amazing drug and without it I would have been hospitalized and miserable for a lot longer (they wanted to but I asked to please give me a couple of days with prednisone and fortunately it worked quickly for me).<br /> But the side effects are awful and I’m just looking for support from others who have experienced it. And wondering how long after taper you got back to “normal”. </p> <p>Longer more detailed version:<br /> *****************************<br /> I know it’s consmetic and a small price to pay, but I have some major “moon face” right now and it makes me want to cry every time I look in the mirror. Not because I don’t like having an insanely round face. It’s because it’s a physical reminder of my chronic illness. To me. To others. To my husband. I can’t hide it from people. I can tell it makes some people in my life uncomfortable. If I wanted to keep it private, I can’t because people who know me can clearly see something is wrong. I’ve had to tell people i otherwise would have liked to hide it from.<br /> Heck, I’m sure that people who DON’T know me can tell something is wrong.<br /> My problem is, I hate not seeing “me” when I look in the mirror. I look warped.<br /> I started IVF 2 years ago for my 2nd son, injecting myself, failures, and the emotional rollercoaster of all that. Then I was pregnant, which was wonderful but I felt horrid and then of course the hugeness and discomfort of that. Then I was postpartum and all that goes with it (physical and mental). Then I finally got UC at 3months pp. And now I’m in remission, but I’m on prednisone and just feel rotten emotionally. I also get Remicade infusions and for some reason that has been mentally and emotionally tolling. Sitting in a hospital with an IV for 3 hours makes me feel...sad. Sickly.<br /> It’s been 2 years of not being “me” and I’m just so over it. </p> <p>Other side effects of the prednisone are hunger, insomnia, anxiety and rage. I’ve had them all, fortunately rage is the least of it. </p> <p>This is all really new (diagnosis) and I know most of this post/rant is me still processing this change. I am seeing a therapist at my GIs office to talk through it all. </p>