The Miserable Prednisonites Club

Crohn's Disease Forum

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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!!
 
long time crohnie said:
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!!
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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.
 
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!!
 
long time crohnie said:
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!!
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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.
 
trashoken said:
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.
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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!
 
long time crohnie said:
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!
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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.
 
I was just diagnosed with Crohns in March and was initially on 30mg of Prednisone and then was on 15 for about 3 weeks and now am on 10mg. I am feeling better in respect to D and pain, but am continuing to lose weight. I have lost about 25 lbs. I do notice that I am just starting to get the moon face in the past 3 days (which coincides with my drop to 10mg) - just wondering how long this will usually last - I am to drop to 5mg next week and then see a GI Dr. on Thursday next week. I am 43 years old and am pretty overwhelmed by this whole thing - I had a CT scan followed by a colonscopy and was told Crohn's involved my small bowel and terminal ileum. I had been very sick (D, V and pain - more that I ever thought was possible) but am now doing better - trying to get out for short walks each day and trying to eat a bit more. I have been off work (I am a nurse) since I got sick. Hoping to return the end of this month - but my sleep, moods and energy levels have been so off I just don't even feel like myself. Everywhere I read it tells me that Prednisone should increase my appetite and energy - but I absolutely have no sense of hunger whatsoever - I now make myself eat every 4 hours as I know I should eat and I am eating mostly rice, carrots and egg with a little bit of chicken - I also have started with lactose free yogurt and that seems to feel very good on the stomach. I am taking Vit C, D and Calcium. Just find it weird that I am getting the moon face now and this is when I am tapering and wondering if this is normal. This forum has provided me with so much information. So glad to have found it.
 
Hi Ladyslipper, I was diagnosed with Crohns in March 2013, where I had part of my bowel and my intestine removed, which resulted in me having a colostomy bad which I hope to have reversed sometime soon. I was on Predisinole for 8 months, the steroids at first they made me feel strong, then after a while they affected my sleep, my appetite, I felt tired all the time and I started getting anxiety, blocked sinuses, painful muscles and a moon face. I finished taking predisinole January 2014, as each week passes I'm starting to feel better the moon face is starting to go and I'm getting better sleep which in turn gives me more energy. I go for long walks every day to strengthen my muscles. We all have different or similar symptoms but I've found as time passes the more knowledge I obtain the easy it is to understand what my body is going through and to face it. I was very overwhelmed by this illness when I was diagnosed, to the extent that I had to see a councillor which helped me a lot, but it does get easier and finally the moon face does go away it just takes a bit of time.
 
My 15 year old son has been on prednisone since diagnosed in jan. Started imuran then tapering pred end of Feb but had a flare so back up he went. A month later started tapering again but when got to 20mg is now having another flare. Doctors want him off pred so started him on Asacol now. 1 week and flare worse. I really want him back on pred as it stopped the flares!! Also loved the fact he was hungry as he's sooooo skinny. But his moon face and acne is so bad..poor guy
 
Seems like the moon face is common when tapering.
And I didn't notice a huge appetite difference until the 20-10mg range. I think I was too crazy at 30 & 40mg to sit around eating!
 
I too noticed more disturbing side effect while tapering which may be confusing as one would think they would lessen. This is why we taper. The drug stays in our system longer then we think, or hope. Prednisone is a blessing and a curse. I notice not too many men on here complaining of moon face and weight gain :) LOL

Re Ladyslipper; hang in there, it will get better and yes this forum I also found very helpful! Welcome to the club!
 
mama21princess said:
Well, I'm back in the club. Started 40 mg today. Blah.
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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 .
 
Here is my story about Prednisone.

I was initially prescribed this medication back in '04 when diagnosed with Crohn's. Went through a taper withdrawal later that year after Remicadee did not work well enough and put on 6MP with Asacol.

I did fairly well on that cocktail but, 6MP stopped being effective and tried to go back on prednisone. Doc said he would provide prescription on tentative basis, provided I agree to try Humira. I agreed but, Doc reneged on prednisone, so I fired him. He interfered with another GI I went to and fired him, as well. Filled complaint with Feds for violation of HIPPA law ($1k fine...big deal!). By this time I was in quite a bit of pain and trying to work...more stress. So, I went to ER and they tried to extort me into a CT scan in exchange for a script for prednisone, even though I had an appointment with another GI in a few days. They gave me the prednisone in IV as I was also dehydrated. I agreed to the CT scan, provided they gave me the script for the prednisone first. They refused so I left. They asked me to sign a release from holding them responsible for future health problems and I refused. Finally got a prescription for the pred after agreeing to have colonoscopy. During colonscopy, I regurgitated liquid in stomach and coded out due to lack of oxygen. If my wife wasn't there may have died she saw the O2 sensor was pretty low. Contracted a bacterial infection in lungs from this event!!! I fired that GI too!!! Finally got stabilized and was on pred for 6 months until stress of working out of state caught up with me. Tried Humira and Cimzia while on low dosses of pred (10 mg). They would work for 3 months or so then stop helping. Finished contract and came back home to new GI that put me on Methyltrexate and Stelera. When I stopped prednisone, I went through 3 weeks of muscle, joint pain and dizziness that I am still trying to work through with lingering knee and shoulder pain (2 cortisone injections) and adrenal gland crash. I now have a very low opinion of most GIs!!!
 
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.
Eileen
 
:confused2:
Tjrock said:
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.
Eileen
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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?
 
Alley2231 said:
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?
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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!!
 
long time crohnie said:
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!!
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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! :)
 
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.
 
mama21princess said:
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.
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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.

Tracey
 
Alley2231 said:
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! :)
Click to expand...

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 have been on prednisone since the middle of March upon my diagnosis of crohns and will be done in 2 days. I am only starting to feel hungry in the past week and have had no appetite at all up to this point. My GI told me I will get my appetite back eventually but is related to the area where my disease is located (terminal ileum) and how acutely sick I was. I was quite concerned as well because everything I read indicated I should be very hungry on the prednisone. As well, I think I was (and still am, to be honest) scared to eat much as I don't want to irritate my bowel as it had finally settled down.
 
When I was really sick in the past, I had no appetite when I prednisone. I don't think its odd. When you're that sick it's hard to eat or even want to eat. I had been on TPN and then a restricted diet and then mass quantities of prednisone and still didn't want to eat.
 
Is anyone taking small doses of prednisone long term? I have been taking 2 1/2 mg. daily for five or six months. It seems that a low dose would not be terribly harmful, but I worry that after a time the low dose will lose effectiveness and what then? There has been no remission of my ulcerative colitis/Crohn's for many many years despite trials of Remicade, Cimzia, Uceris and other steroid
types like Cortifoam. My next step I guess would be to try Humira, but I sure would like to avoid that if possible.
 
long time crohnie said:
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:
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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! :(
 
Mama my daughter is right with ya there. She was on 40 mg prednisone since Sept 2012, got down to 25 mg 4 months ago and started the long process to taper. After tapering completely off just over 30 days ago she is back on it full dosage.. welcome back sleepless nights, moon face, and anger! Yuck!!
 
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.
 
SupportiveMom said:
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.
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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.

It's just super frustrating right now and really hits the self esteem hard!:confused2:
 
I had to really slow my taper around 15mg.
I struggle with weight too & have been happy to not worry about it for the past 5 months since diagnosis but now I'm ready to get in track, I just don't know what "on track" looks like now that I can go into salad mode (which I think has caused me stomach problems without knowing in the past). I don't know how much exercise I can tolerate either. Sticking with elliptical and walking for now.
 
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!
 
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.
 
Paxxy said:
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.
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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!
 
Has anyone else alternated dosage from day to day? I've been taking 40 mg for about a week and a half, and my GI wants me to take 30 mg today, 40 mg tomorrow, 30 the next day, and so on.
 
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.
 
happy poo poo said:
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.
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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.
 
good luck paxxy.
i was on cortisone for a few years when i tapered…..not months…….it took my body a while to make 'cortisol' naturally by itself again after years of me taking the pills…
 
Nancye50 said:
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!
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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.
 
40-30 drop? I take it your pills come in 10 mg dosage? My daughter does the 40-35-40-35 taper but her pills are 5 mg each. Hoping this time to taper to 20 semi-quickly and stay there for a little bit. the last taper ended poorly so when we get to tapering off I think I will try the 20 mg month 1, 15 mg month 2, etc. Being on Prednisone for 2 1/2 weeks she has already gained 10 lbs. She is severely underweight, but if she continues like this she will go in the other direction way too quickly!
 
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.

EDIT 6/5: Just to follow-up, the tooth pain pretty much ended 2 weeks after I stopped taking Uceris. So it lasted a total of 3 weeks.
 
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7vNH said:
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.
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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've been on pred since january, finally tapering off now and will be starting Humira next week. Sadly I can start to feel some of the pain coming back, I'm on 15mg right now and hoping that I can keep tapering down without to many problems.
 
I have been on pred since January too and am down to 10mg. Despite all my original problems coming back including pain and blood i am going to continue to taper as i refuse to be on this drug any longer than i have to! It has caused me so many horrible side effect and never stopped me feeling ill! In fact i have felt worse the past four months than i did before i went on the pred! I have no idea what the next course of action is, i just want to get off this drug asap!
 
So I've been getting bad headaches when drinking alcohol since I've started tapering. It seems to be getting worse as my dose lowers. Anyone else have this?
 
I am so ready to be done with prednisone. Ugh. I have more acne now than I did when I was a teenager!! I'm on 20 mg right now.
 
I 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?
 
Mondowicked said:
I 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?
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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 x
 
Try some Adrenal Complex by Integrative Therapeutics. It helps to kick start the adrenal glands. For me every joint and muscle in the body ached for 2 weeks.
 
So it seems that although the acne has reduced now I'm down to 10mg it seems like every one of the hundreds of pimples on my back dripped out a tiny bit of blood onto my bedsheets while I was sleeping. My bed looks like a starry night.
 
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.
 
SusanB2001 said:
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.
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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.

I was super hungry when I was on a higher dose and I definitely indulged, but the most weight gain has occurred with me tapering....from support here I've learned that once you get off the Pred the weight should eventually come off too. So I've given in to purchasing leggings and wearing shirts a size larger to cover up my already bloated, preggo looking belly!

I know you were hoping for ways to not gain, but thought I'd just share my experience, as well as what my doctor told me!
 
I agree with Alley2231. It doesn't seem to matter what you eat, you are going to gain weight on prednisone. It is so frustrating, too.
 
I've been on Prednisone since April 2014 and I cannot keep weight on, just keeps dropping off. All I can figure is the nause/pain & D are stopping me from gaining weight. It has really been a struggle. I'm on a lower dose than many but luckily I haven't experienced many of the known side effects of Prednisone (I'm sadder but I take that as a sign of being sick of being sick - but luckily no craziness!!)

Hope it gets better for all of you!!
 
Hi guys I just been diagnosed with corns and have been on predisone 40 mg for a last 2 weeks I feel great I do have the mean munchies not keen on putting on weight was I was a big girl before and lost 29 kg in the last 6 months due to being sick I'm having trouble sleeping but I have sum stuff called rescue remedy it is fantastic I have lots of energy now feel like it been given speed I'm going down to 30 Mgs of predisone for 2 weeks and 5 mg lower every 2weeks for 3 months I'm hoping it helps
 
Ive been taking Pred for the past 3 months. Tapering off now, and getting all the bad side effects. My forehead has a rash and acne; I call it "rashne." I have horrible insomnia, giving me time to write this. But it has increased my appetite and supressed inflammation.
 
I've been on Pred. for the past 2 months as we've been waiting for Cimzia to (hopefully) kick in. It'd been almost 2 years since I'd been on a prednisone dose exceeding 20mg for any period longer then 2 weeks so needless to say... I'd forgotten just what kind of hell the drug can raise. Here's what I've noticed this time around:

Weeks 1-4 on Pred. - Feeling awesome, everything still hurts, and there is still blood etc. but so so much energy! I actually RAN UP STAIRS for the first time in almost a year. Sure.. it left me heaving like I'd just sprinted a mile, but that wicked grin couldn't be wiped off my face for hours.

Weeks 1-4 - Struggle not to overdo it because it feels like there is more energy then I realistically have. Moved during this time and fell into a worse flare requiring us to double the dose.

Weeks 2-4 - Mean uncontrollable munchies - and I live in Colorado. I can generally handle having the munchies. Not this time - seemed like I needed something in my mouth at any given time. Munchies/ food obsessions came as no surprise considering I was OBSESSED with late night food network when I was first diagnosed and on 80mg of IV pred. receiving TPN. Munchies/ urge to constantly eat faded a bit once I established a eating plan with set meal/ snack options to pick from, specific times/ days to prep food and meals, and consistent times to eat meals and snacks.

Week 3 - start seeing what TigerFu so accurately deemed "rashne" across my forehead. Only time I've EVER had any acne has been while on pred.

Week 3 - Gained 8 lbs. since starting pred.! Inching my way out of my weight danger zone!

Week 4 - Present Noticing my chipmunk cheeks are coming back - I hate how it makes my jaw feel heavy and HURT. Starting to notice more hair on pillow/ in shower/ thinning in front. The bald that never really grew back from 2.5 years on pred. are getting worse again. So many fuzzies and flyaways. I feel like a poofball with long strings of hair under all the fuzz. Wish I could afford a haircut :ymad:

Week 4 - Present - Anxiety especially in public. No desire to leave house, especially unaccompanied. Furthest I venture most days is onto the balcony. Went for a 4 mile hike - took a week to recover/ feel energy levels return to "normal."

Week 4 - Present - Heartbeat and glucose levels seem off. Often find myself shaking for no reason or heart beating unusually quickly. Haven't felt like passing out so not too concerned. Just hate feeling so jittery all the damn time.

Week 4 - Present - Roid rage alternating with depression. Since being on Pred. I have threatened to punch my love in the face, punched a wall (twice), and broke my phone because my voicemail wouldn't let me listen to messages. Including meditation in my mornings has luckily leveled it out a bit the last week and a half even if it's not controlled completely. Depression - need I say more? I found myself with tears leaking from my eyes for a solid 2 hours the other day because of how it's making my hair fall out. Ridiculous. That is the only word I can think of for it because I end up feeling depressed over small, insignificant downfalls in personal progress or perception - always small potatoes that make me shake my head at the absurdity.

Week 5 - Present - Insomnia. If I can get my butt in bed before 9:30 I can usually miss the insomnia period of my night. But then I hit the night sweats around 4:00 A.M. right before my bowels start speaking German and urging me to GET UP RIGHT NOW. It likes to say "Gefahr" aka DANGER!

Week 6 - Looked like symptoms are starting to lesson. Pain/ discomfort about half compared to where I was before doubling the dose to the current 40mg. Perhaps all the side effects are worth it after all.

Week 7 - Increased hair loss. Realize I may not be able to maintain my hair for my sister's wedding in 6 weeks. Started looking at pixie hair cuts and joking with my man about wigs and role play. Gotta find a silver lining, am I right? Except... it triggered a 5 hour period of complete depression and inability to focus/ snap out of it even though I knew it was silly to be that attached to my hair.

Week 8 - Begin Taper to 30mg. Lets see how they hold. Pred certainly provides its fair share of entertainment and embarrassment but I can't wait to be standing on my own 2 feet again without it!
 
Prednisone is not my friend I ate like a football player on steroids when I first was put on it like 20 yrs ago to control my colitis it did work but made me a nasty person to be around. I had nasty mood swings, gained about 60 pounds or more and have never been able to remove them. A Dr. once told me about 4 years ago that I probably still had some prednisone in my system. It caused me to have osteoporosis in my Rt hip after being on the stuff for 9 years at 60 mg. It's not like you can just stop cold turkey they have to tapper you off the stuff. It took around 2 years to taper down to just 10 mg before I had my large intestine removed 13 years ago. However I have just been put back on the nasty drug at 10 mg due to being miss-diagnosed and now it seems like I have active crohn's disease just found this out 2 weeks ago. All I can say the drug works but it depresses me to know I have to be back on it. I have a T-Shirt that has a fat lady printed on the front and the saying said "It's not fat it's Prednisone" :lol:
 
I'm back on the Pred now. Knew what to expect this time so hasn't been so bad, only thing I still seem to struggle with is the bad moods I seem to easily fall into. Little things irritating me that normally wouldn't. Sometimes I say something and think 'why did i just say that?' that isn't something i'd do when I'm not on this drug! The brain and the mouth definitely aren't n'sync at times!
 
Hi!! I was recently put on a Prednisone taper, starting at 40mg for a month, then to 30 for 2 weeks, so on and so forth. I was also put on Lialda and Azathioprine, my symptoms have almost disappeared and I feel better than I have in months. I am terrified of putting all of the weight back on that I've lost though!! I needed to put on about 15lbs to look healthy again which I think I've already put on in week, I'm hoping some of that is just water weight, I mean who gains 15lbs in a week?!?!? Does anyone have any tips on helping with the fluid retention or maybe some tips to maintain a good weight while on prednisone?
 
Hey Jessicashea,

I've always struggled to keep weight on with Crohn's, but in the past while on Prednisone the opposite has always held true. It was a huge issue for me earlier on in my relationship with the disease when I went from 83 lbs to 140 in under 3 months and had never weighed over 110 until then. Since struggling with and overcoming the psychological impact and body issues I've certainly taken a more serious approach to diet while on prednisone, especially since gaining a lot of weight in a short time - water or otherwise - causes an immense amount of physical discomfort in my experience.

This time around on Pred. I've noticed a huge difference in how I've gained weight by exercising the following:

More but smaller meals - I eat 5-7 times a day, but keep portions smaller then I expect myself capable to eat. If I'm still hungry I have no qualms getting seconds, but I find when on Pred. I'll eat whatever is on my plate so it's best to start with less.

Meal Plan - Pick your meals or have a handy list that outline your options for each meal for the week. For example, my breakfast list is yogurt, 2-3 eggs, and 1 slice toast or 1 biscuit. Whatever I don't pick off my list for breakfast I eat for my morning snack w/ a supplemental drink or powerbar.

Emphasize protein over carbs if you can tolerate it - In addition to diet I've made it my goal to practice yoga (alternative active w/ yin every other day) to build up the muscle mass, flexibility and strength. I'm noticing body feels denser, not just heavier w/ squish like it has in the past while taking pred.

No sugar or sweets as a general rule. I follow this for reasons other then weight while on Pred. Primarily because I tend to be prone to yeast infections while taking steroids and sweets/ desserts always send me into a 2-3 day spiral in symptoms, which is frankly after 8 years is just not worth it anymore.

Watch added salt/ sodium - watch sodium intake. Cutting out sweets tends to also drop the level of high-sodium foods I consume, although I have a soft spot for crackers/ chips while on Pred. I think it has something to do with the crunch. If I can't wait out a salt craving I'll make my own pita chips or roasted chickpeas. Same crunch but more control over the amount of salt, if any.

Eat Mindfully - this helps whether on pred or not. I think maintaining a healthy relationship with how you take meals is essential especially when on steroids. Try focusing on the taste of the food, texture of the food, smell of the food, how it feels when you first start eating, how you feel half way through the meal, how you're feeling at the end of the meal - higher energy? lower energy? It gives something to focus on other then that incessant urge to consume everything one could potentially consume.

I've been pretty sick so gaining weight has been a struggle even while on Pred., but following the above I've gained almost 8 lbs over the course of 4 weeks. The first 5 I gained in my first 10 days on 40mg when I was letting the munchies get the best of me determining how much and of what I ate. Since exercising the above the weights been coming back nice and steady like I've been aiming for. There's still a bit of moon face, a pooch to my tummy, some fluid retention, but for once I don't just feel the false energy/ well being from prednisone and seeing that number on the scale finally start inching in the right direction, I feel stronger muscularly something that was certainly missing in my past runins with pred.
 
duh panda!! thank you so much, those are all super great tips!!! I really need to just stay in control and everything will be fine!!! I'm totally printing your response and hanging it on my fridge!!
 
Hi guys I'm also on pred I'm in 25 Mgs tapering every 2 weeks I started out on 40 Mgs I'm also starting to put on weight and not sleeping well will the craving for food go away when I go off the pred ? The hi is going to put me on azathioprine soon
 
The past couple of days I have been drinking TONS of water. I've been putting lemons, limes and cucumbers in it and it seems like it is really curbing my urge to constantly eat. It may be worth a try!!
 
I was on predisone a while ago, and it was very successful, but I couldn't stay on it long-term.

Recently I was given a short course of prednisolone. I don't know why the doctors opted for prednisolone rather than prednisone this time - anyone have any ideas? I was only on the prednisolone for a week, and not at as high a dose as I started on prednisone. The only side effects I noticed this time round were having significantly more energy and an elevated mood. The good mood was a huge benefit having been stuck in hospital so long. It was the only time of this stay that I didn't get terribly homesick in the evenings. I felt awful coming off the prednisolone - tired again, homesick again, achy, and wanting to take codeine instead. I haven't got the test results back yet so they don't know how well it dealt with the inflammation. I didn't notice my digestive system improving much to be honest.
 
Just out of hospital after 5 day stay as a result of flare. Was on very high dose of steroids intravenously during my stay. When I was discharged I began a much lower dose of 40mg a day and unfortunately had a bad kickback. Not sure how common this is but it resulted in back pain and symptoms like diarrhea and cramping. That passed within a couple of days and symptoms now more manageable.

In the past few days I have moved to a low residue diet which seems to help symptoms but resisting over eating is always a balance. I don't have weight gain problems just weight loss and due to an active lifestyle i have to prepare and carry meals at all times to keep symptoms at bay.

All other symptoms described in this thread are concerns however steroids are still the most effective contingency in a flare up.
 
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?
 
Jackie Aba said:
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?
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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.
 
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 -_-
 
aideen33 said:
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 -_-
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It may be worth talking to your Dr. and seeing if there's something to help manage the nausea.

I didn't bring up my nausea for years while on pred. because I just figured it was a symptom not worth concerning myself with... but nausea imo is one of those nagging symptoms that just makes life downright irritating (which isn't good when on pred haha) and there are a lot of options.

Pred. doesn't have to be bane of one's existence, it will be at times, but for the day-to-day there is a lot that can be tried/ done to manage any ill side-effects.
 
I'll have to bring it up. My appt is on the 11th so we can discuss working toward a more long term solution as he doesnt want me on prednisone long term for obvious reasons. He tends to blame the nausea on pyloric stenosis and getting too full, but with the pred i dont even have to eat first
 
Hi all.

I was on intravenous cortisol a month ago in the hospital. Have been tapering since release from 40 mg. Now down to 20 mg.

I am so tired and fuzzy headed and usually have daily panic attacks. I am a Crohnie of over 40 years and have never had these effects from prednisone.

Does age have anything to do with this or is this strictly the pred?

I feel like I'm losing my mind.

Thanks,
Miles
 
I do believe that older folks do not tolerate drugs as well. You probably had a whopping
dose of intravenous cortisol last month in the hospital and have not gotten over that yet.
I've read that side effects of these drugs hang around for a very long time. Tapering
always seems to be a beast to deal with.
 
Lam123 said:
Has anyone had changes to their menstrual cycle while taking prednisone?
Click to expand...

Hi Lam123,

I notice my menstruals are earlier (up to a week) and pain/cramping more intense since I started Pred taper of 60mg end of May. Im on 30mg pred now still tapering 10mg every 10 days.
 
What is the best way to taper prednisone from 6 mg to none? My daughter has been doing it 1 mg every 2 weeks. She has been on prednisone for a long time and I am worried about her adrenal gland fatigue. Her GP suggested alternating days of 5mg with 2.5 mg. Her GI even suggested staying on 2.5 for a longer period of time. What about at 5 mg go down by .5 mg per week? Any suggestions and successful tapering experiences?
 
Just did the 5mg taper to 2.5 for 2 weeks then 2.5 every other day for 2 weeks. Now I'm pred free but feeling horrible. Couldn't get out of bed hardly last Monday. Don't know if that was due to my first round of methotrexate without the pred or if my body was just starting to miss the pred. Starting the big D again but no blood, and not all day/night long, painful joints, swelling feet/face/joints. Do you just stick it out, if so for how long? Do you call and say "I'm not okay and can I start on low dose and taper slower? I really hate to do that, but I don't want to go into a "big flare" that will make me go on a massive dose.

What do you do? Any suggestions? How long til it goes away, and when do you know if you are if your adrenal glands don't start back?
 
Kammrm, do you mean that you skipped 4 and 3 mg and went directly to 2.5? I was thinking of having my daughter go down by 1 mg. every 2 weeks and than 1/2 mg. starting at 2.5. to no pred. Do you all think this is slow enough? She is on 1.5 mg of LDN and this is helping her stay healthy for now. She can raise that dose slowly if needed.
 
I'd call your doctor - same thing happened to me and my GI put me back on Prednisone and a much lower taper and I started to do better right away - or you may have not been ready for a taper yet. Either way, I'd call the doctor.

Hope you feel better!!
 
I was taking 2 1/2 mg. prednisone daily and decided to taper by making it
2 1/2 mg. every 30 hrs. instead of every 24 hr. and then every 36 hrs.
That worked for a week or so but then the symptoms of diarrhea and bleeding began increasing. I have gone back to 2 1/2 mg. daily and managing better.
My GP says our body makes 7 mg. daily and felt that 2 1/2 mg. daily was
not a really dangerous thing. I worried that by totally eliminating the
prednisone I also would end up having to take a much larger dose just to
get back to where I was with the 2 1/2 mg.
 
Mm I'd go slower when tapering down from that amount, I usually do high doses 2 weeks then slower n slower etc, but it's important to listen to your gp, there are adrenal support supplements out there, Google is your friend, search for some, look at reviews etc, I am
Looking at getting one soon, I'm on 30mg pred ATM, tapering slowly, 25 tomorrow for 2 weeks, then 20 for 2 n a half weeks etc etc, that's just me though, iv found if I taper too soon I just end up needing to go back on a higher dose so i like to take it slow.. Bless you all
 
The problem is that when we are taking prednisone, our bodies stop producing it and some people's bodies just take longer to start up producing it again. You need to go back to a dosage that controls the symptoms, then start tapering much more slowly. It might be, however, that you need to continue a base dose of 2.5mg. I know that people are really frightened of steroids but I was on prednisolone for 25 years before I had my proctocolectomy because it was the only drug available then that had any positive effect on my Crohn's.
 
I love prednisone! It leaves me feeling restored and full of energy and vibrant and normal.
I struggle with prednisone... It doesn't let me sleep and I end up being tired from doing too much to quickly because I am decieved.
I hate prednisone. I am full of anger and impatient irritability where I snap regarding insignificant things and even my skin starts looking like the red bumpy hell I feel. Only a few more days of this... hopefully the bleeding will stay away this time. Hiss!!
 
I've been back on prednisone a short while now. I'm not sure if I've noticed any benefits or side effects yet. I was awake a bit the other night, and I wondered if it was prednisone insomnia, but last night I slept well. When I was on prednisone before, as long as I took Amitriptyline I could sleep, but I couldn't sleep at all while on pred without it. So it surprised me to be awake at night, since I'm still taking Ami, but I'll see if that turns out to be an ongoing thing. When on Amitriptyline my anxiety is very high, so I've been wondering also if prednisone will augment that. But so far, I haven't had any symptoms that I can confidently put down to prednisone.
 
Ugh I hate hate hate hate hate prednisone. It makes you feel better realllly quick, and then you go to ween off and the withdrawal symptoms/ crohn's symptoms come rushing back. But, there no way in hell I'm doing a slower ween. I am an emotional mess, gaining a ton of weight, terrible headaches, etc., I feel like these symptoms have made my situation almost unbearable. I was on 80 mg and have successfully weened down to 15mg over the past few weeks. Ive been in this situation before so I know I have to go really slow on the taper from this point forward.

BlackButterflies you are so right on, I get it!

Anyway, I wanted to say to UnXmas, I have major sleeping problems on the pred. My gp has given my 0.5 mg of Ativan to take at night. It is a huge life safer. Night time is always tough for me so this little hit of calm gets me ready for a nice full night of sleep. Just a suggestion..
 
having some issues wondering if anyone else has had this because I don't see my doctor for another 15 days I've been on prednisone since July and it never worked or even had many side effects everything would go through to quick until a few weeks ago I went into the hospital and got the IV steroids which helped for about 5 days but since im just on oral now its not working again but I've had some thing strange happen to my shoulders and my upper arms when I put my hands on my head it all tightens so much they feel rock hard to the touch I'm not a very muscular person and i am heavier so it isn't just my muscles flexing its the strangest thing and Im a bit worried only research I could find that could be similar is cushing syndrome but IDK how that starts any help would be greatly appreciated!
 
Hmm, I have definitely had some strange symptoms while on Prednisone that I always blame on the drug. I haven't experienced what you are, but my first bit of advice would be to not stop the prednisone, it can have terrible w/d. I would (try!) to wait it out and see the doc, but maybe ask if they have an on-call nurse you can chat with? That sounds very uncomfortable... sorry I wasn't much help, but am sending my support your way!
 
thanks for replying anyway I won't be stopping it until the doctor tells me but you are the first to respond on any sights that I've asked the question I guess it must not be a common side effect if at all I just can't see it being anything else just a little worried but thank you
 
I woke up and was so stiff I couldn't get out of bed. I had to call my husband to help me- thank god he was home-and he took me to the doctor. The Rheumatologist have me 1.5 ML of cortisone in a shot and 60 mg of pred, tapering 10 mg a day. My heart pounds very hard with the slightest movement and I'm so hot and sweaty I can't stand myself. I'm also currently hiding. :(
 
Anyone else's sense of smell get super screwy while on pred.?

Sometimes it's normal, other times even the most average every day smells come across as wrong or just off in some way - anything from body odors to certain foods, perfumes, detergents, etc. It's been driving me nuts! It's not just that the smells are suddenly more off putting or nauseating but they come across as completely different from what I remember things should be smelling like. Have certainly hurt some feelings from these misconceptions the last couple months which I hate.

Only other time I can remember this happening despite being on and off of pred. for the past 8 years was when I was initially hospitalized and was on IV everything.

Any thoughts?
 
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?
 
Sorry, I can't help you. I only ever went on Prednisolone once...and stayed on it for the next 25 years!:ywow: :D
 
Susan2 said:
Sorry, I can't help you. I only ever went on Prednisolone once...and stayed on it for the next 25 years!:ywow: :D
Click to expand...

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.
 
I came off it in 2000, after I had my proctocolectomy. I have osteopoenia but I am a 71 year-old woman, so it is to be expected. I have never broken or fractured a bone although I am quite active. My skin became thin while I was on the pred and my face became fuller but, as I said to someone else on the Forum today, I was very thin and actually looked better while on it.
 
I actually think I may have my first prednisone side effect after all - I've been getting hot flushes. I often get too hot, but these are definitely flushes rather than consistently feeling too warm. Oh well, at least the weather is getting cooler, so it's the right time for it!
 
Working toward starting to taper off Pred. (Finally) after 6 months. on a dose of 40mg and a year on and off of it to manage extra-intestinal inflammation before that. Dr.'s orders are to lower by 10mg every 5 days, which I find absurd from past experiences of trying to taper and failing to complete it due to experiencing severe withdrawal effects. Maybe i'm just being overly-cautious, but I'm going to give the 10mg a shot at least until dropping to 20mg and taper every 7 days instead of 5 and see where I sit at that point. Really really slow has always been most successful and I hate yo-yo-ing on pred.

That said, it's been some time since working to taper and if I remember correctly it a lot of the side effects also mirror crohn's symptoms (e.g. abdominal pain, etc.). Anyone else currently tapering? If so, at what rate? What do you consider your normal during a taper? I know it varies for everyone - and from each round it seems - but wouldn't mind hearing others' thoughts/ experiences!
 
UnXmas said:
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?
Click to expand...

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!
 

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