I finished early January too and still hoping to feel better! Ok Crohn's wise I think, just waiting for the prednisone to get completely out of my system!!
How long do you think it will take to get out of our systems, I've had nothing but problems apart from the crohn's, headaches, dizziness, muscle pain, my feet really hurt especially when I get out of bed in the mornings, I only sleep for 2 hours at a time, I also have bouts of anxiety less frequent but still worrying, and at the moment my sinuses are driving me nuts. How about you do you have these problems or any other problems.I finished early January too and still hoping to feel better! Ok Crohn's wise I think, just waiting for the prednisone to get completely out of my system!!
Thank you that is really reassuring a light at the end of the tunnel is just what I need right now. I don't know what a bloat is perhaps you could let me know as I am 50 and io might have that to come.How strange you say your feet hurt. Mine did too! Not so much anymore but I now have aches in my knees. Most of the side effects you described should go away within a few weeks. The sleep loss and anxiety are due to the prednisone and should eventually resolve itself. My bloat took a long time this time! Dont know why, middle age metabolism change possibly. You will feel better and free of symptoms soon Im sure!!
Im sorry. By bloat I meant the weight gain and water retention that is also a side effect from prednisone. I had been on prednisone a lot in my 20's and early 30's and never had weight gain or puffiness or a lot of the other side effects happen. The one that I really had bad was mood swings and it felt like I was psychotic, so much so that I vowed I never take it again. Well...at 46 I was on it again and gained a lot of weight along w other side effects. I think getting older and having a metabolism change was to blame for some of it. I had never had sore feet before and didn't know where that came from! Good to hear I'm not alone!Thank you that is really reassuring a light at the end of the tunnel is just what I need right now. I don't know what a bloat is perhaps you could let me know as I am 50 and io might have that to come.
Thanks for explaining I've put on a lot of weight, I've been doing a lot of walking to try and get it off, but it's not working, and its very painful as you know when your feet are hurting. I had mild mood swings, the anxiety was the worst.Im sorry. By bloat I meant the weight gain and water retention that is also a side effect from prednisone. I had been on prednisone a lot in my 20's and early 30's and never had weight gain or puffiness or a lot of the other side effects happen. The one that I really had bad was mood swings and it felt like I was psychotic, so much so that I vowed I never take it again. Well...at 46 I was on it again and gained a lot of weight along w other side effects. I think getting older and having a metabolism change was to blame for some of it. I had never had sore feet before and didn't know where that came from! Good to hear I'm not alone!
Me too - well sort of. I thought today was going to be my last day on prednisone but when I saw my GI today he said I needed a higher dose and would need to be on it for longer. I refused so we compromised on 9mg of Entocort ( spelling ? ) for the next 3 months .Well, I'm back in the club. Started 40 mg today. Blah.
Hello everyone. I just joined this web today. I'm still not to sure how to go about it so please have some pity on me.
I found this site while searching for some info on prednisone.
My long but I'll try to make it short story is. Lol
Dx with crohns in 1990. I was 23 years old. I was put on pred at 60 mg for about a year.
I think I had every side effect that was listed. I was naturally very thin my whole life. But after a few weeks of pred I was blowing up. Very mooned face a lot of belly extension. Not good for a girl that was in the fashion industry. I also recall the sweating, mood swings, no sleep, joint pain.....Ect
I was very lucky that my next major flare was not for another 8 years (1998). At this point I was taking pentasa daily. I begged the doctors to do what ever they could to not use prednisone. I got away with cipro and flaygel. And only a 10 day of pred.
Life went on. I got married. And had 2 beautiful boys. I owned 2 hair salons. I became a parent advocate for children with autism (both my boys have autism). I also had two back surgeries from a car accident and a very rough child birth. (Broke my tail bone while pushing).
Life went on.
No major flare up I stayed on pentasa and went for my yearly colonoscopy. Around 2010 my life changed in a very dramatic way. I went to rehab to get off all the pain killers that so many doctors gave me cause of my back pain. I don't balm them. it was me that stuffed them In my mouth. But I had to detox. After 28 days and countless NA meeting later. I really want to be healthy. I made the decision to rid my body of all drugs including the pentasa. I'm mean it's been so long and I haven't be all that good about taking 16 pills a day anyway. Right? No harm done?
Life went on again. 2011 was the worst year of my life. I had back surgery again. I lost my mom to cancer. I had to terminate a pregnancy because of medical reasons, I saw my business starting to fail and my husband left me for another women. To say I was beat down was and understatement.
But as I said before life went on. And boy oh Boy it did.
Fast forward to current times. I met and married the most amazing man in the planet. He gets me and we laugh all the time. He has two beautiful kids. So we are now a family of 6!!
I sold one of my salons and closed the other :-( but I got a job doing hair and I love it. Just being able to go to work and leave it all behind when I walk out the door is such a relief.
My boys are doing great and I really love my personal life.
Then as life would have it. Everything changed again.
March 26 2014. I woke up with a stomach virus that I know I picked up from my son. I got sick a few times in the morning and fell asleep. I woke to this sudden and intense pain in my belly. That I snapped my eyes open and said "omg I remember this pain" shit I knew in my "gut" I was having a flare up. Stupid me said I'll wait till the morning (my husband was out of town for work and not getting in till that night) then call the doc. Well ....that night was horrible. I hyperventilated several times. Hand, feet and lips went numb. So dumb of me to wait. Doc took me right away and said get you ass to the hospital now. After ct scans and blood they confirmed yes it was a Flare up and started me on cipro, flagel, and the dreadful predisone.
I didn't care what they
Gave me at that point the pain was to great. Both my lungs collapsed because I was clenching in so much pain that I had to stay in the hospital longer and take pain med that I swore I would never take again. But I had no choice.
10 days later I went home. On cipro, flaygel and 30 mg of predisone. And all I could think about was "ok it's not as high as a dose as last time, so I can do this....
My gut was feeling good. I could Deal with the side effect. The first thing I noticed was I LOST 16 lbs in the hospital. But I new that it was only going to come back and it would be fast and furious. I started to get very hungry and four days out I started with the knee and ankle pain. After 4 days of this and still standing at work for 9 hrs a day. I wasn't sleeping either. I would get maybe 2 hrs at a time. On my 4 th night of this pain in the legs it was only 1 week out of the hospital. I Felt like someone took a bat to my legs. I never felt pain like it.!!!I thrashed about in the bed for about 3 hrs and finally my husband said we are going back to the ER. It's was 4:00 am and he tried to dress me and I fainted the minute my legs hit the floor. He carried me to the car and off we went. I started to see thing in the car and passed out again. And then agin in the ER. I thought I was dying and to be honest I didn't even care. I wanted the pain to go away so bad. I wanted my Mom!!! The ER doc said he heard of this before but never saw it. I was givin morphine. And a script for Percocet. They watched to make sure my oxygen was good and my lungs didn't collapse. I was sent home and my doc called and said he really didn't want to start weaning me down so fast after a major flare but he new that this pain was to much. He wants me to follow up with a rheumatologist. I have an appointment next week. The pain in my legs spread to my elbows and rest. But after he weaned me down to 17 1/2. The elbows and wrist are fine. The ankles are not to bad. My left knee is still in pain but my right knee is the worst. I can't bend it much and I have to walk with a limp. And hold in for dear life just sitting and standing. I went back to work last week and it's a good thing that I stand for a living. Cause if I sit it hurts more. I stopped the pain'killers honesty cause I ran out doc only gave me a weeks work. I was very good about taking them I really could use them at night and in the morning but I decided to give Tylenol a try. By the way it it sucks!
Well that's my story for now. I am curious as to what the doc will say next weeks.
Crohns is good right now I'm hoping cause of this fast taper of the pres. It don't come back. I wonder if someone out their is experiencing something like this. I feel very alone.
Oh and,I stared with back spasms yesterday the start in my lower back and go up to my neck at the base of my head and then go away. Weird!!
Thanks for letting me share.
Hi Alley! In my experience the only way to easy weight loss is our disease and that is NOT a good way to lose weight! I too am at the highest weight I've ever been and I do not exercise like you do. I don't know your age, but w the fitness program you have and watching what you eat the weight should come off ok. Make sure you leave yourself a cushion of a few more extra pounds, I learned after many years of getting sick off and on that you will need it. As for the moon face and bloat, mine are finally gone after 4mos of being off pred. It took a lot longer than I had expected, but w the help of this forum I learned that this is not unusual and you are not alone! Stay strong!!Hello everyone!:sign0144:
I was diagnosed with Crohn's Disease in January of this year. I started on Prednisone (20mg) in February when my symptoms started getting worse and Entocort didn't do anything. I ended up having a really bad first flare and ended up in the hospital twice, 3 weeks apart from each other. In the hospital I was on IV steroids, but when I was out of the hospital I was on a high dose of Prednisone (60mg). My first hospital stay resulted in a 20lb weight loss. In between my hospital stays I noticed I was having trouble sleeping and shakiness in my hands. It wasn't until my second hospital stay in which I noticed the moon face forming, extreme sweating, a huge appetite and weight gain (I gained 7lbs in 10 days). With my discharge at the beginning of April I started Remicade and I also started weaning off Prednisone.
I am currently down to 20mg of this lovely drug, but I'm super frustrated! I feel like I'm more bloated and gaining more weight weaning off of it. I have gained 25 lbs in a month! It's disgusting and I am disgusted with myself.:yfrown: My self esteem is totally shot and I'm generally a very positive person (or at least I used to be before this diagnosis). I'm currently at the highest weight I've ever been and I'm someone who has done a lot of dieting and while it took a very short time to put this weight on, it's going to take 4-6 months for me to get it off. In the past that was with eating healthy foods (I'm currently on a low residue diet) and exercising 5-6 days a week. I am still recovering and it's going to be a while before I can even think of hitting up spin, zumba, run a 5K or go to a boot camp class.
How long does it take for the moon face and bloat to go away? Also, has anyone had experience with the weight coming off easily after the steroids have gotten out of your system? Or is it something that you really had to work at?
Hey long time crohnie....I'm 32 years old and with my dieting experiences over the years I definitely have noticed the older I'm getting the harder it is to loose the weight. I haven't been able to exercise in 6 months, due to a head injury I suffered back in November and then the Crohn's diagnosis and all the fun experiences I've had with it. I'm still recovering right now, so exercise isn't something I'm doing at the moment. I'm hoping to start some walking within the next week or 2. I didn't really experience the weight loss symptom of Crohn's, outside of my first hospital stay, but just figured it was due to being NPO, on TPN and a clear liquid diet. Is it bad that I wish I had that symptom?:tongue:Hi Alley! In my experience the only way to easy weight loss is our disease and that is NOT a good way to lose weight! I too am at the highest weight I've ever been and I do not exercise like you do. I don't know your age, but w the fitness program you have and watching what you eat the weight should come off ok. Make sure you leave yourself a cushion of a few more extra pounds, I learned after many years of getting sick off and on that you will need it. As for the moon face and bloat, mine are finally gone after 4mos of being off pred. It took a lot longer than I had expected, but w the help of this forum I learned that this is not unusual and you are not alone! Stay strong!!
hi mama21princess, I go through bouts of really hungry and then I don't feel like eating anything. I thought that mine might be that I'm going through the menopause, but I'm not really sure.Has anyone else had the experience of prednisone making them NOT hungry? Usually, prednisone makes me feel like I am hungry all the time. But the past few days, I barely feel like eating. Food doesn't even sound good.
Thats the thing!! I can't eat any of those foods either, unless i want to pay for it later:ymad: I still will eat fiber foods occasionally but not enough in my opinion. How are you supposed to lose the weight if you can't eat healthy:confused2:Hey long time crohnie....I'm 32 years old and with my dieting experiences over the years I definitely have noticed the older I'm getting the harder it is to loose the weight. I haven't been able to exercise in 6 months, due to a head injury I suffered back in November and then the Crohn's diagnosis and all the fun experiences I've had with it. I'm still recovering right now, so exercise isn't something I'm doing at the moment. I'm hoping to start some walking within the next week or 2. I didn't really experience the weight loss symptom of Crohn's, outside of my first hospital stay, but just figured it was due to being NPO, on TPN and a clear liquid diet. Is it bad that I wish I had that symptom?:tongue:
The diet is what's killing me right now. My entire adult life I trained myself to eat whole grains, salads, fresh fruits & veggies, nuts and high fiber foods and now, I'm not supposed to eat any of that stuff. My doctor did give me the okay at my last visit to have wheat bread and okayed some greens (spinach-finely chopped up and cooked & peas). I'm looking forward to the day when I can have a gigantic salad again!
Exactly!! I saw my doctor today briefly when I went in to get some immunizations....he pretty much said it doesn't matter what I eat right now I'm going to gain weight regardless, because of the steroids - how discouraging!Thats the thing!! I can't eat any of those foods either, unless i want to pay for it later:ymad: I still will eat fiber foods occasionally but not enough in my opinion. How are you supposed to lose the weight if you can't eat healthy:confused2:
I haven't had Crohn's long enough to experience multiple flares and weight loss. I'm someone who has struggled with my weight before Crohn's and I've always had to work at it with eating healthy and exercising 5-6 days a week to maintain. Now...I can't eat all the good, healthy stuff and I'm not to the point of exercising quite yet! I'm a little nervous about the steroid weight coming off - due to my previous weight loss struggles. I hope it does come off with out trying, but I'll just have to wait and see! I also don't know how much longer I'll be on Prednisone - I've been tapering slowly, I go down to 15mg starting on Wednesday, but I don't know when and what amount the next taper will be.Alley, my daughter lost her moon face after about 10 days. The weight started dropping then too. The weight took nothing for her to lose, but then she always had an issue keeping weight on.
Paxxy, I've been on Imuran for years and it has worked really well, and I never noticed any side effects.I had only one flare in over 10 yrs! Everyone is different. Hope it works well for you!So I've been down to 20mg for a week and Im definitely flaring back up again. I guess it's on to imuran as the next step.
Thank you, that is very helpful. I've upped the dose for now but will see what the dr says on Tuesday. I guess I was kind of worried that if I ignored the returning symptoms it would undo all the work the pred had already done.sometimes when you reduce/taper off cortisone your body freaks out and presents symptoms very similar to a crohns flare (the runs, no appetite, no energy, pain in the guts) but it could just be that the reduced dosage is messing with hormones that affect digestion and everything else????? Your body gets used to the prescribed dose…
I remember it took me well over 12 months to get off cortisone and I remember every time i tapered it felt like the crohns was flaring, so i went back up again….with hindsight, i dont think it was the crohns flaring, i think it was my body freaking out that the dosage had been lowered.
Eventually i tapered and tapered through the pain and the side effects and went through 4 weeks of hell and i was cortisone free….it was the best thing I have done for my body/mind and encourage you all to get off the cortisone, it destroys your bones.
There are side effects of being done with Prednisone too?! :eek2: And I'm freaking about the side effects I have with being on it! Oh, I have facial hair with being on it and it was never an issue before. I have the nice little peach fuzz mustache that like 13 year old boys get - so embarrassing! I have the little goat hairs on my chin too and I have random dark hairs on other parts of my face.I think I'm seeing effects of being done with pred. I've been on it since beginning of February. My hair lady said last week that my hair is thinning. Could it have gotten really thick on pred and just now falling out? Also, I think I have more facial hair than normal! I can usually get by with bleaching my upper lip but it seems extra long and I've noticed a few on my chin. Goat hairs!
I actually made up a thread about tooth sensitivity! I've been on Prednisone since February and this side effect started in April. I originally thought it was from Remicade because the sensitivity started shortly after I started Remicade, but in the replies I got I figured out it was Prednisone. I even had the confirmation from my GI doctor the other day that it is from the Prednisone. Pretty much every side effect I've had from the meds I'm told that it's the steroids or the Remicade and that I have to deal. I guess it's better than being in the hospital stuck on IV's and getting poked for 2 weeks. The tooth sensitivity is quite annoying, I've been brushing with Sensodyne toothpaste, but that takes a couple of weeks to really work....so I'm waiting for that to happen.I'm surprised that there are not more comments about tooth sensitivity in this thread. When I got off of budesonide (a corticosteroid like prednisone) I started having horrible tooth pain!
I only had a 24 day supply of Uceris 9mg delayed release budesonide pills which I got because I was having a flare right before a cruise. This was the first (and last) time I used this kind of medicine.
I took 12 pills, 12 days in a row while travelling because I was having symptoms (9mg/day). I stopped taking them for 10 days, but symptoms came screaming back! So I started again, 6 pills in 6 days, then I designed my own taper: 1/4 pill, twice a day for 12 days (4.5mg/day).
So I took 2.25mg in the morning and 2.25mg in the afternoon on my taper. But the point of all of this was that I had to split a delayed release pill that included instructions to never crush, chew, split, etc.:ybatty:
This meant I could have had more of the drug come in contact with the inside of my mouth, and that could have caused the tooth pain to be worse...I don't know. I take my 5-ASA, fish oil, and anything else in a handfull that I toss into my mouth. I make no attempt to limit contact with my mouth. So in the case of my taper, taking 1/4 Uceris pill, twice a day, there was plenty of opportunity to have budesonide contact my teeth and gums.
Anyway, it has been 9 days since I stopped and I still have pain some pain (but it seems to be getting less severe). I am taking acetaminophen, and that helps. I just hope it goes away completely.
I went through the same as you ended up with anxiety in hospital got down to 7 mg from 80mg they put me back to 20mg and reduced me 1 mg a week. It took longer but I finally came of them January 1st and I'm starting to feel normal, whatever normal is so there is light at the end of the tunnel. GOOD LUCK xI feel like I'm going insane on this drug. I was down to 10 mg, but then had a super rapid heart rate. My primary care doc checked my labs and said I had adrenal fatigue from tapering too quickly (5mg ever 5 days from 40 mg down). Now they've doubled my dose back to 20 and my mental health is suffering. I feel like I'm just not myself up in my brain region. I feel all funky...fuzzy? Depressed a bit? Spacey? It's hard to label. I thought I just needed a boost of energy so I had some caffeine, which made me feel even funkier. Does anyone else experience this or have any ideas to help?
I've put on 35lbs since February thanks to Prednisone. My doctor straight up told me that it doesn't matter what I eat or don't eat, I will gain weight regardless, due to the drug. I've even been good about tracking my food and calories and exercising several days a week and I gained weight.Hi folks,
I am new here so hope I'm doing this right. I want to vent about prednisone and ask advice...
I am having a crohns flare and have been put on prednisone. I am about to start my 3rd week of tapering off but have put on 4 lbs; not good for me as I'm a crohnie who does not suffer from weight loss. So gain is NOT good/wanted.
Any suggestions on how to not put on weight from prednisone? I try not to eat a lot but this drug makes me soooooo hungry all the time. Argh!
Thanks in advance for any advice.
Yes, I think I read the same thing when I was looking up the difference - that the only clear difference between prednisone and prednisolone was for people with liver problems, which I don't have so I don't know why my doctors opted for prednisolone. Maybe they just chose it randomly. Prednisone seems to be the more common choice for IBD, and side effects seem to be pretty similar.UnXmas mentioned prednisolone. I had just been looking that up because I wondered
if it had fewer side effects than prednisone. What I read was that prednisone turns into prednisolone in the liver and the drug prednisolone is more readily absorbed than prednisone and is used if the liver is weak. From what I could find, prednisolone is more
expensive and some said it's effect may possibly be better than prednisone, but that was
debated. Some of the other names of prednisolone were methylprednesolone and Medrol.
Have others had any experience with prednisolone for their UC or Crohn's?
It may be worth talking to your Dr. and seeing if there's something to help manage the nausea.Pred is both a lifesaver and the bane of my existence. Up until recently my experiences had been short courses 10-20 mg max, taper over 7-10 days for my asthma (cause i needed multiple organ systems that dont work lol). This though..... Started on 40 mg 3 1/2 weeks ago, tried a taper starting last week and made it 1 week on 30 mg before the bleeding got so bad the doc said Nope, back to 40 for you. It does help but im also alternating between hungry and nauseated, fuzzy headed, irritable and irrational, oh and hot.... all the time... but i dont sweat normally (side effect of the Levsin apparently) so thats fun -_-
Wow, that long?! Have your side effects changed over time? Do you have the problems that come with long-term use, osteoporosis for instance? I've had idiopathic osteoporosis since childhood, and though I've somehow never broken a bone or had a fracture, I am convinced it is only a matter of time before this catches up with me.Sorry, I can't help you. I only ever went on Prednisolone once...and stayed on it for the next 25 years!:ywow:
Not sure if this will help but when I started predinisone near the begining of the year I didn't get any side effects or benefits of taking it at all I think it was going through me to quick to actually be absorbed so I spent the night in the hospital and received them through an IV and BAM! it helped and ever since I've had the worst side effects and a little benefit from them but my GI told me its worked like that for other patients of his too. and just a heads up all the doctors at the hospital I stayed at treated me like I had no business even being there and told me there was no difference from taking the pills but obviously they were wrong I had an amazing week after doing it it just didn't stick for me but maybe it will help you!I started prednisone on the 7th October and have yet to feel any benefit or side effect. I remember my first course of pred, there was also a couple of weeks delay before I felt something, the first effect being a massive increase in energy. But I had a short course of prednisolone in the summer, I was only on it for a week and within that short space of time I was full of energy and my mood was boosted (though it didn't actually do much for the inflammation, I had to come off it for other reasons, and am back on prednisone now to try and get things under control again).
Does anyone know why the variations? Will I get the same side effects this time as last time, or does it vary from one course to another? Does it make a difference if it's prednisone or prednisolone? My dose of prednisolone was actually lower than the dose of prednisone I'm on now, so if anything I would have thought this time I would have seen effects sooner?