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The Miserable Prednisonites Club

Hi all...I had surgery (colectomy/ileostomy) about a week and a half ago and am finally weaning off prednisone after a year. It has made me bitchy, bloated, and overall just some strange dark, moody, crying (and restless night sweating) version of myself who screams at people in parking lots and grocery stores. It has seriously damaged and outright ruined some very important relationships in my life... I am SO READY to be done with it, but not sure how my body is going to react or what they are going to do to heal my rectum to prepare it for possible reconnection in Nov/Dec....

Down to 15 mg this week.:thumleft:
 
Hi all...I had surgery (colectomy/ileostomy) about a week and a half ago and am finally weaning off prednisone after a year. It has made me bitchy, bloated, and overall just some strange dark, moody, crying (and restless night sweating) version of myself who screams at people in parking lots and grocery stores. It has seriously damaged and outright ruined some very important relationships in my life... I am SO READY to be done with it, but not sure how my body is going to react or what they are going to do to heal my rectum to prepare it for possible reconnection in Nov/Dec....

Down to 15 mg this week.:thumleft:
I'm in the same boat, I've had three remicade infusions and so far I'm still having a flare in my rectum (discovered with a sigmoidoscopy last week) next week I go for a full colonoscopy to see what else is still active. We briefly discovered surgery, but t scares the heck out of me!

Please keep me posted on your recovery.

I hope you heal quickly!
 
I've been tapering for a couple of weeks now. Down from 60mg per day to 40 at the moment. I've been dropping by five every five days, give or take.

Finally tapering as I've been on 6MP for about three months now, and my second remi treatment I'd tomorrow (well, technically later today, as usual I can't sleep). Fingers crossed that I can get all the way off.

The last time I taperd below 40mg I wound up,flaring and in the hospital,for a week. I've had a little bit of pain increase as I've been tapering but I've been able to either handle it without help or manage it with Percocet.

My whole goal at this point is to keep that up and don't wind up in the ER doubled over or worse with another SBO.

One downside - I have an interview today for a consulting contract - a years work for me, which is a big deal. Of course, I always feel the need to explain why I look like a cross between Jabba the Hutt and Alvin the Chipmunk. My suits don't fit we'll over my buffalo neck, so my professional appearance is less than I'd prefer. Oh well, you just do your best, right?
 
Anyone else have horrible headaches on Pred. This time round I have had a headache on the right side of my head and behind my eye. I am tapering off and now at 17.5mg but the headaches haven't changed at all!!! Maybe it's the mix of Pred and Imuran..I don't know :( so confusing!!!
Heyyyy

Thats strange, I came off pred about 4 weeks ago, and on my last week on them and right up until last week I had exactly the same pain as you are describing! Its stopped now, but absolutely nothing at all would help the pain! Its maybe withdrawel (sp) symptoms from them?

Positive note, my hamster face is gone and the weight is coming down! Still have the spots though :(
 
Just wondering if anyone can clue me in: are prednisone and hydrocortisone the same (dosage wise)? On other words, is 40mg prednisone the same as 40mg Hydrocortisone? I'm unfortunately on HC until a more long-term medication is effective. I've had two loading doses of Remicade. Thanks for input!
 
Just wondering if anyone can clue me in: are prednisone and hydrocortisone the same (dosage wise)? On other words, is 40mg prednisone the same as 40mg Hydrocortisone? I'm unfortunately on HC until a more long-term medication is effective. I've had two loading doses of Remicade. Thanks for input!
No they're not. You need a much higher dose of hydrocortisone. IIRC, 100mg hydrocortisone is equivalent to 25mg prednisone.
 
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Twokatmew,

Thank you for the response! Hydrocortisone, though it may help inflammatory-wise, also seems miserable with mood swings. I guess I somewhat fit in with the Miserable Prednisonites though on HC. I look forward to being done with the HC. Thanks again for your knowledge and time!
 
Twokatmew,

Thank you for the response! Hydrocortisone, though it may help inflammatory-wise, also seems miserable with mood swings. I guess I somewhat fit in with the Miserable Prednisonites though on HC. I look forward to being done with the HC. Thanks again for your knowledge and time!
Y'welcome! Yes, I'd say you fit right in with us. Side effects are pretty much the same. As I understand it, HC is faster (but not as long) acting as Pred.

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I was in colostomy surgery 7 weeks ago and 4 weeks after surgery i was diagnosed with pyoderma gangrenosum in peristomal area. Have to start prednison 60mg and tapering 5mg/week. In surgery they also discovered that i have 50cm of my ileum inflammed. So steroids are for that and rectum too. Allso started Humira again, and max my azamun dose in to 150mg/day. So i am kind of with more medicines than before the surgery.

I was on prednison before i started humira (nothing else worked), and i was on it for for years on off. Everytime i taper it down, flare started and i have to start it again. I always get the first weeks of it in IV cos it didn't help when i started it orally. Starting dose was 60-100mg in IV. Anyhow, those four years, i gained weight 80lbs!!!!!!!!!!!!!!!!!!!!!!!! I am still overweight (lost weight about 15lb now after colostomy surgery, hooray!) and i am teffiried that i gain all those plus more back :( It's so hard not to eat when you are starving all the time.. I am trying to keep mealtimes, so i know that if i get "hungry" before mealtime, it's just prednison talking :tongue: I am on 50mg now and been on prednison about 3,5 weeks now.
 

UnXmas

Banned
Sounds like you've had a really rough time, Jimena. :hug: I didn't get any hunger or weight gain with pred, and apparently the side effects you had with one course of prednisone aren't necessarily going to be the ones you get with a subsequent course, so it's possible you might not have the same troubles this time round. I understand how hard it is when it makes you feel your body's not under your control though; I had terrible mood swings and facial hair growth and all sorts of weird things from prednisone. Stick with it though, and don't be too hard on yourself if you do gain some weight - the majority of the side effects will normalise again, and it's worth it to keep you as well and healthy as possible.
 
Yet i haven't gain any weight so i am glad for that. Moonface i do have already and i look like chipmunk :ylol2:
 
I am down to 5 mg with my taper....feeling much better, bloating going down. Been eating EVERYTHING in SIGHT and gained 10 pounds in the last few weeks, though. :eek2: Guess I needed it, I was looking pretty corpse-ish. ...

I have been on prednisone for a year now...it really is amazing to me how much it changed my personality - I am feeling SO much calmer overall now, more grounded and balanced. I will be off of it completely in about a week. Then I guess we see what happens. I have no colon anymore, so don't know how the Crohn's will react or where it is hiding in my body now.
 
I am down to 5 mg with my taper....feeling much better, bloating going down. Been eating EVERYTHING in SIGHT and gained 10 pounds in the last few weeks, though. :eek2: Guess I needed it, I was looking pretty corpse-ish. ...

I have been on prednisone for a year now...it really is amazing to me how much it changed my personality - I am feeling SO much calmer overall now, more grounded and balanced. I will be off of it completely in about a week. Then I guess we see what happens. I have no colon anymore, so don't know how the Crohn's will react or where it is hiding in my body now.
I agree so much with this. Before pred I was so, so anxious and pretty depressed because I couldn't cope with the symptoms, wasn't sleeping, wasn't eating etc. After pred, and after being able to get some sleep I felt so much more calm, rational and never had any anxiety.
 
I am new to my Crohns diagnosis. I have been on Prednisone for 2 months now having a hard time weaning. When I was down to 30mg ( from 40mg) for 11 days I got a major flare with terrible abdominal pain. Upped me back to 40mg. I had a vacation planned right after so now I am only starting to wean again. Currently at 30 mg for day 4. I am scared I won't get off this Prednisone.

I can tell symptoms are already returning but I am biting the bullet to get off of it. My doc wants to start Humira if I fail at this wean. Has anyone just dealt with the pain to get off Prednisone? Does it get better if one waits it out?
 
Hi LodgeLady,
It took me 10 months to get off of prednisone. I had to taper at a rate of 2.5mg every two weeks. The best that could do for me was to stop major bleeding. I was on remicade before i finished my taper. Every time I had a major flare up, I did have to increase my prednisone (hense why it took so long to get off!) my advice is, even though the side effects are brutal, don't just grin and bare o get off of it. If your symptoms are bad enough you could do major damage to yourself this way. Also, it will be hard for your doctor to know what medications will work for you. Trust me, you don't want to be taking medications that are stronger than you need.
Hope this helps, best of luck!
 
Hi LodgeLady,
It took me 10 months to get off of prednisone. I had to taper at a rate of 2.5mg every two weeks. The best that could do for me was to stop major bleeding. I was on remicade before i finished my taper. Every time I had a major flare up, I did have to increase my prednisone (hense why it took so long to get off!) my advice is, even though the side effects are brutal, don't just grin and bare o get off of it. If your symptoms are bad enough you could do major damage to yourself this way. Also, it will be hard for your doctor to know what medications will work for you. Trust me, you don't want to be taking medications that are stronger than you need.
Hope this helps, best of luck!
Oh no! I need to get off this prednisone. On day 5 of 30 mg. Also doc upped my Pentasa from 2g to 4g a day. My fail date last time was day 11. What happened last time is I started to lose my appetite then the pain came on full force ( abdominal). I absolutely don't want to go back up on the dose. So I was hoping if this happens again to just take pain meds till I get started on the Humira? My insurance has a preauthorization for Humira. So is that pretty quick? Is Humira available at the pharmacy? I'd rather try to deal with the pain until I can start the Humira if my doc will do this. Any harm this way? Maybe I will get lucky but I just don't have the confidence. :confused2:
 
Im new to this support group so bear with me if I rant. I have been in "remmision" of some sort for the past 13yrs, finally after many years of surgeries and tons of meds, including the dreaded prednisone. The last time I had to take it I vowed I would never take it again. I was a mess w side effects, felt darn near psychotic! Recently, I started to have low abdominal pain and found on CT w contrast in ER that my whole colon and rectum is inflammed, so i was put on 40mgs of pred to start. Tried to wean 40mg for 5 days then 30mg for 5 and so on... Didnt work. Back up to 40mg for 2wks and will wean by 5mg instead. My fear, in the past every time I tried to wean off, Id end up back on and that always led to surgery. I was able to stay skinny when younger on this drug and with Crohn's, but I've learned to eat thru the pain, and man am I eating and gaining now! Bloated, always hungry, tightness in chest, heartburn, headaches and sleeplessness is issues now. Was put on amyltriptiline to help w sleep as well as bowel rest at night, and it helps. Shocked to be going down this road again:( and having to buy bigger clothes!!!
 
Lodgelady, I wonder if the speed of your taper is causing you problems. While I don't love the side effects, my GI always puts me on a 7 day taper eg. 40mg for 7 days, then 35mg for 7 days, then 30mg for 7 days etc. it takes longer to taper off, but I've never had a recurrence once off. :)
 
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I've had the same issue. I went down by 10mg before and when I finished my taper stared having symptoms again and ended up back up on 60mg, highest dose I've ever been on. Now I just finished this taper of 5mg every two weeks, so we will see. I feel your pain - the side effects this past time threw me for a loop, affected my eyes, my joints, my mood, sleep everything. Doctor things I may be steroid dependent and has set up an appt to see what other options I should try so I don't have to go back on pred.

I know it sucks, hang in there though!
 
I agree, it took me 10 months to successfully wean off of prednisone sometimes reducing by 1/2 a tablet (2.5mg) every 2 weeks. I hated waiting so long, but it was the only way of successfully getting off the stuff.
 
Thanks for reminding me of how long it can take to get off the prednisone. In the past i was never able to stay off for long if ever..both times led to bowel resection surgery. I pray that isnt the case this time. They didnt have remicade or humira back then tho so maybe my GI will discuss those. I see him 10/29. I was fearful of going on Imuran years ago and going on those scare me even more.
 
So I'm doing great on my Pred wean and I get a bad cold that goes into asthma and bronchitis. Now upped the dose to 20mg from 10mg! :confused2:
 
I was put on Prednisone at 12 and still have nightmares at the thought of taking it. After 3 months it was not helping and I still had all of the side effects, including liver problems.

After taken off of it I was put on a strong auto-immune drug. While my body was still getting off the Pred. I was having unexplained energy spurts. During one of those I rode my bike out in front of a car and would have been killed if the car were going any faster.

To this day I am still convinced that Prednisone almost killed me.
 
French vs. US treatment story!

I am diagnosed with Crohn's. After much testing ("trianglation plus") because my (US) gastroenterologist said, "Crohn's is not a diagnosisis to give someone unless you're really sure".

It had been nearly 2 years off all medication with no flares. Darn it. My personal theory is that this one was triggered by a horrible flu that made me feel like I'd been hit by a truck.

OK, 9 days back from a week in the hospital (I'm in France, went to the American Hospital in Paris). The treatment was VERY interesting: more than twice the Prednisone I was ever on in the US, AND THEY LET ME EAT. Regular food. A low-salt, low-residue diet, but croissants, baguettes, and coffee, meat and rice and mashed potatoes and creme brûlée. And liters and liters of Evian.

The doctor said that if I stopped having gas or diarrhea, or my stomach swelled much more, he'd talk to me again, but the food basically just went right through me. After the colonoscopy prep (it was like GoLitely), stools gradually got better. Oddly, that happened before, too. Either it was just time, or the prep did something.

I ate dinner after the colonoscopy prep. At 6 pm before a 9 am procedure. And they said fine to eat up 'til midnight, but I wasn't very hungry.

Sure beat all hell out of grudgingly-rationed ice chips for 4 days, and TPN, followed by the ever-popular clear liquids, which is what I always got in the US.

History:
The initial attack, in 2010, was ("more likely than not"-doctors) triggered by a mystery bug I caught in India. By the time I ended up in the hospital, I'd been on Ciprofloxicin (antibiotic) for 10 days, home, throwing up from the Cipro, and horrible diarrhea, nearly constant. The doctor had called in a prescription for an anti-nausea drug that worked, but knocked me out. He said just had to "tough it out" until the Cipro had time to work. So I had several days essentially sleeping next to, or in, the bathroom, could eat, but was too sleepy, and was one sick sick little bunny before I concluded that I was going to die and called my stepmom across the state, who called an ambulance.

After a day or so, a smart doctor looked at the scans, decided maybe it was time to quit trying to ID the mystery bug and start treating the symptoms, and called a gastroenterologist. They put me on 85 mg. of Prednisone. I felt like someone had turned on the :sun:.

My ankles swelled to twice their size, and I wore those sheepskin bedroom slippers for a month, but that was the only side effect I ever had. Unbelievably, the latest fad at the local high school was grey sheepskin bedroom slippers, so I was stylin'. What are the chances?

After that I had 3 flares, pretty much one every 6 months. Then nearly 2 years fine, on no medication.

When I flared the other times, in the US, they put me on Prednisone, 60 mg, for a few days, and tapered down to 20 mg as fast as they thought was safe, and then gradually down to nothing. And the aforementioned ice-chip diet, with TPN, and finally clear liquids, gag.

Here in France, on the other hand, it was, boom, 150 mg of Prednisone for 2 days, then down to 80, and down to 40 by the time I left the hospital, and I'm staying on 40mg for the next 2 weeks, at which point I see the gastroenterologist again and we talk about treatment options.

I've been home and on the 40 mg for a week and a half now, and no ankle swelling, yay! The new side effect is insomnia (but I'm an extreme night person anyway), but I have no trouble napping during the day. Oh, and last night I had a red rash on my leg. Not raised or itchy, just red like a design. But I'd had a glass of wine. It was gone by the time I woke up (the rash, not the glass of wine. Well, both, actually).

I should add that I take a mood stabilizer and an antidepressant, so maybe that shields me from the mood-related side effects to some extent.

And I'm on a kind-of-low-salt, kind-of-low-residue diet. They doctor said " don't add salt, and check labels when you buy processed food, but you don't have to ask the waiter in restaurants or anything". And avoid lemon juice or vinegar, or anything too acidic. For the semi-low-residue part, I eat white rice, regular pasta, and white-flour bread instead of whole grain, and I only eat cooked vegetables, and only the ones without a lot of fiber. No fruit but bananas so far. Lean meat, chicken, fish, anything dairy is fair game...except the doctor said to avoid soft French cheeses because they have too much salt, but hard cheeses are fine, just check the label. Oh, and he said that if I drink sparkling mineral water, I should drink Perrier, because of the salt...which seems weird, because Perrier always tastes salty to me. We drink mainly sinkwater that's been through a Brita filter, and lots of it. I love water. And cold tea, mainly green tea or peppermint herbal. I have been adding things like honey, cinnamon, tumeric, garlic, coconut milk, dark chocolate to my diet, just in case they work.

As for exercise, I have to walk the dog anyway.

So, that's ma story. So far, Prednisone is my friend, and the treatment of big doses of it and actually eating meant that I came out of the hospital feeling better, instead of weak as a kitten and anemic.

I thought it was interesting (and, let's face it, just pure lucky), because it's so different than what I'd heard from others. But I do really have Crohn's, and I've taken Prednisone 5 times now, and I really haven't had more side effects. Either I should really go to Monte Carlo with my luck, or I really shouldn't, because I've used it all up.
 
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I've been on Prednisolone since March.

Originally it was supposed to be a six week course but every time I get down to about 10mg, I seem to get a return of the Crohn's symptoms so the dosage gets put back up and the side effects come back. I have ADHD and Aspergers Syndrome and it seems like the steroids exaggerate the symptoms of those but it's a decision between the pain of the Crohn's or dealing with that for a while.

The last time I had my dosage increased, I was so hungry which was the first time I have ever been bothered by that side effect. I literally wanted to eat every five minutes, it was driving me mad.

I'm hoping that my consultant will find an alternative medication that seems to work better at keeping the Crohn's away and then I might be able to come off of the prednisolone.
 
After being on 40mgs of Pred for 4wks my GI checked to see what was going on with a colonoscopy and found NO Crohn's?! I was on it for no reason and gained so much weight! I too was hungry all the time and had problems sleeping. Now my doc thinks its diarrhea prominent IBS, and what showed as "inflammation" on the CT was a contraction or spasm in my colon. Ive had problems w spastic guts my whole life and nothing seems to work. Now he wants to put me on Lotronex. Anyone know anything about that drug to help w chronic diarrhea?
 
Why didn't he do the colonoscopy first before starting the prednisone? I would think the prednisone might mask any inflammation that might be happening.


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Just wanted to say that yeasterday was my last day of prednison, Yay! I was on it about 3 months of something. This time. Last time i was on prednison, i was on it 4 years!!! It was horrible. I hope this lasts... (i am not in remission).
 
LodgeLady, believe me I was very upset w the fact that he started the pred first too!! By all accounts it appeared to be a real flare. Had stool cultures done and all negative for bacteria and cdiff. I was so upset that I actually told him so during my colonoscopy. I woke up during, Im difficult to put under, and heard him say all looks good, no inflammation or active Crohn's. I told him right then and there how ticked I was he didn't check first. Didn't even show up microscopically. May have reduced inflammation, but unsure at this point. Says that I most likely have Diarrhea Prominent IBS. Meanwhile I'm blown up like a balloon and very frustrated!!!
 
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My gastroenterologist does the same thing. If he thinks I'm having a flare he puts me on pred first thing before anything else. No wonder he is worried I'm dependent.

I've been off for a month now and besides the joint pain and being extremely fatigued all is good.
 
I thought I'd have my last stint on Pred last year, instead looking for modulen. Nevertheless, I was admitted into the ER last night with sever pain and high CRP (Inflammation) markers. Hello 60mg of pred! Long time no see...
 
Just curious, are the psychological effects very common on a dose like this? I'm a few days in, and I'm getting worse issues than ever! I had a mental breakdown today and I've just felt generally neurotic compared to my normal self. Dreams are also a completely whack thing now. Maybe it's a bit different from the previous doses I've been on...
 
Going from 40 mg down to 30 for the next 10 days. Went out for lunch and had chili (too salty) and my feet started to hurt, which means the skin is being stretched and they're swelling. So back to being careful about salt for the next month...that's fine, just funny to me, because I have low blood pressure, and salt's not something I normally have to worry about.

I wanted to head off the swelling, so I bandaged my feet and ankles (that rubberized type of bandage that sticks to itself) and kept my feet UP. Piled cushions from the back of the couch on the end of the bed and slept like that. Was actually pretty comfortable! Looked online for various home remedies and used the ones that looked harmless (eating bananas, mustard seed soak, etc.)

This morning my feet are back to normal! I'm sure I'll get a bit sick of matzo with unsalted butter and unsalted cashews and bananas for snacks, but oh, well.

Yesterday I was super-hungry...must be the Prednisone. The GOOD news was that it wasn't a specific craving for any certain kind of food, so I just lined up some edibles that weren't too bad and stuffed my face, lol. It was like every 5 minutes I'd go stick my nose back in the fridge! Mmmmm, raw onion...? I normally hate eggs, but I made a midnight omelette? Weirdness!

To the people having the mood-related side effects, I wonder whether a mood-stabilizing medication might not help? I'm on one, and haven't had the ups and downs or nervousness or weepiness that some others report. Might be worth asking for a trial prescription or a referral if it's a problem. All we need is to alienate all friends and family with sudden moodiness and paranoia, then come off the Prednisone, and find that they really ARE looking at us funny!
 

UnXmas

Banned
Just curious, are the psychological effects very common on a dose like this? I'm a few days in, and I'm getting worse issues than ever! I had a mental breakdown today and I've just felt generally neurotic compared to my normal self. Dreams are also a completely whack thing now. Maybe it's a bit different from the previous doses I've been on...
You're on 60mg? Yes it can definitely have psychological effects of many kinds. That doesn't mean there can't be other factors influencing you psychologically, but if you're noticing a significant difference to how you are normally, prednisone is a very likely cause.

To the people having the mood-related side effects, I wonder whether a mood-stabilizing medication might not help? I'm on one, and haven't had the ups and downs or nervousness or weepiness that some others report. Might be worth asking for a trial prescription or a referral if it's a problem. All we need is to alienate all friends and family with sudden moodiness and paranoia, then come off the Prednisone, and find that they really ARE looking at us funny!
I found Amitriptyline was an absolute lifesaver when it came to the insomnia and emotional side effects of prednisone.
 
Years ago when I was on higher doses of prednisone, I had horrible psyc issues. I found myself in the corner of my bedroom having a mental breakdown! I swore then that I'd never go on prednisone again it was so bad. That was before I was diagnosed with depression (another common condition for those of us who have a chronic illness) and was put on antidepressants. This time around, I'm not having as many mood issues. I was also given Amitriptyline and that helps w sleep and evening out my mood.
 
It's absolutely ludicrous how they actually let people use this stuff. It's 4:50 and I'm freaked out about sleeping because the last attempt about 24 hours ago resulted in me pondering the intricacies of true life and death. Ahah.

I hope you guys are all doing well! It's hard dealing with medications sometimes, but I guess it's good to see the interesting and funny sides of it; like weird cravings you never knew you'd even consider. :)
 
One of my friends w Crohn's was on pred a long time ago, and her husband woke up one night and saw her standing on the edge of the bed ready to "dive" into the bed. She thought she was at a pool( and no, they didn't have a water bed :) ). She was just having weird dreams and mentally out of it!

The cravings are horrible! I too have low blood pressure and never need to worry about salt, but being on pred makes me crave salt!! Ramen noodles are usually a savior for me during a flare but not when Im on pred, way too salty and blew up!! I wake up w a salty taste in my mouth too, weird stuff.:ywow:
 
OMG, please don't say ramen! My husband's Japanese, and we were planning to go to the BEST ramen shop in town, until my ankles decided that any salt was too much. I've been sad all day, thinking about other customers having MY place in line and eating MY noodles!

On the good side, the taper should be done in a month or so, then it's RamenFest!

Zilla7777, I hear you on the insomnia. Still, Prednisone is my friend...it's way better staying up until sunrise because of some weird drug, and not because it hurts too much to sleep.

I wonder how I'll feel about it in a couple more weeks?
 
One of my friends w Crohn's was on pred a long time ago, and her husband woke up one night and saw her standing on the edge of the bed ready to "dive" into the bed. She thought she was at a pool( and no, they didn't have a water bed :) ). She was just having weird dreams and mentally out of it!

The cravings are horrible! I too have low blood pressure and never need to worry about salt, but being on pred makes me crave salt!! Ramen noodles are usually a savior for me during a flare but not when Im on pred, way too salty and blew up!! I wake up w a salty taste in my mouth too, weird stuff.:ywow:
I found that after I was off the pred for a week that foods changed in taste. I love tea with milk, couldn't stand the taste. Lots of things tasted slightly off. Thankfully a couple weeks later it went away.:)
 
I'm on humira every two weeks with 7.5mg of mtx and now on prednisone as the others weren't really doing the job. I'm also insulin dependent diabetic and my blood sugars are extremely high, as high as 22.5 before a meal. Means adding more fast acting insulin which makes me gain more weight and trust me i don't need extra weight. To top it off I find that I'm really turning into a bitch. The small things really piss me off and would love to get into a fight. Not lie me at all. All that I can hope is that it is worth it over the next month. My Dr. Started me off at 50 Mg for three days then down by 5 mg every three days and should be off in a month. My sleep pattern is really sucking right now. Good thing no diarrhea but still going lots and taking a long time to get rid of the poop. I'm so tired of feeling like shit. You would think meds should make you feel better but they don't seem to. I try to put on a happy face when around everyone but I'm not. This sucks!
 

UnXmas

Banned
Zilla7777, I hear you on the insomnia. Still, Prednisone is my friend...it's way better staying up until sunrise because of some weird drug, and not because it hurts too much to sleep.

I wonder how I'll feel about it in a couple more weeks?
I found the side effects of prednisone cumulative. At the beginning, I had none, and wondered what all the fuss was about, then the side effects just kept on growing - I got more and more, and they got worse and worse. I liked the incredible extra energy at the beginning... but then later I hated it so much, I couldn't sleep and was constantly restless, couldn't settle to anything, concentrate on anything. But I was, eventually, able to find meds to calm all this. Keep a close eye on the side effects you're getting now; I think planning early about which side effect symptoms you might need to treat later is a good idea.
 
I'm definitely keeping an eye out.

Just to reoort that I got the swelling to go down on my feet. Hopefully a low-salt diet will keep things OK until I'm done tapering off the stuff.
 
I am stuck at 10mg right now. Don't feel great, but don't feel too bad. I am going to try 7.5mg starting today. If I can bear the initial pain for a couple of days that will be fine. I just have to get off this stuff. My GI appt. is Tuesday so we will see what he says. The Humira is helping.
 
I'm down to 15mg today of prednisone! So far so good. D has slowed down a bit. Seems my first BM is somewhat formed, and then I go several times after that are all watery and yellow. Taking Donnatol right now along w lomotil to help while weaning off pred. Just having extreme fatigue.

Careyearl, Could they be weaning you off too quickly? It seems mighty quick to me especially since your still not feeling good. Just a thought.
 
I found the side effects of prednisone cumulative. At the beginning, I had none, and wondered what all the fuss was about, then the side effects just kept on growing - I got more and more, and they got worse and worse. I liked the incredible extra energy at the beginning... but then later I hated it so much, I couldn't sleep and was constantly restless, couldn't settle to anything, concentrate on anything. But I was, eventually, able to find meds to calm all this. Keep a close eye on the side effects you're getting now; I think planning early about which side effect symptoms you might need to treat later is a good idea.
I really appreciate everyone's input, and I know where you are coming from UnXmas! I this is my 3rd or 4th bout on Pred, but this was definitely the worst. I've dropped off down to 50mg on doctors orders and the psychological effects are somewhat gone, but still... It's weird waking up a ray of sunshine knowing you've had 3 hours of sleep and have 20 things you have set yourself to do today! o.o

It's good to hear you're starting to feel good Crohnie, but I agree completely with what you are saying about being weaned off of it too early. Even if it's just a dull ache, it just builds. It can even take a month or even multiple; but it just comes back. It's best to get active treatment until you feel as top notch as you can be pain wise.

It isn't normal to feel pain all the time. (I think a lot of us forget this.)

Hope you feel a bit more energetic soon Crohnie!
 
It isn't normal to feel pain all the time. (I think a lot of us forget this.)
This is so true, and I do tend to find myself surprised when I notice something is different on a given day, only to then realize I'm not in pain and that's the difference!

I've been off Pred for about three weeks now. Some abdominal pain but I'm willing to put up with it if I can stay off the pred. At the point I'm taking 6mp (150mg per day) as my only real treatment. It's working fairly well.

As for the pred, I was on it a fairly long time - about 9 months I guess - and I'm still waiting for the moon face to recede as well as the rash I've got under my arms, around my waist, and on my thighs. I'm also experiencing really severe joint pain that, from what I've been reading elsewhere, is probably from ending the pred treatment.

But I'm still pretty happy to be off the pred and willing to put up with a little discomfort to be there. I'm just hoping all three fade in time.
 
Can I join? I have every side effect listed on the first page of this thread except the weight gain and moon face :eek2: I'm down to 30mg from today and still having major sleeping problems. Finally managed to see my GP yesterday and he gave me Chlorpheniramine (Piritone) which is supposed to make you drowsy/sleepy as a side effect. It made me feel sleepy for about half an hour before spending the rest of the night wide awake. He said go back if didn't work and he will try something else, waiting for another Dr to ring me back as the one I saw yesterday is off. I really need sleep. :(
 
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UnXmas

Banned
Can I join? I have every side effect listed on the first page of this thread except the weight gain and moon face :eek2: I'm down to 30mg from today and still having major sleeping problems. Finally managed to see my GP yesterday and he gave me Chlorpheniramine (Piritone) which is supposed to make you drowsy/sleepy as a side effect. It made me feel sleepy for about half an hour before spending the rest of the night wide awake. He said go back if didn't work and he will try something else, waiting for another Dr to ring me back as the one I saw yesterday is off. I really need sleep. :(
Welcome to the club. The only thing that fixed the prednisone-induced insomnia for me was Amitriptyline. It worked like magic. I'd tried other sleeping pills with no good results. I think if you keep trying different meds, you should find something that can help you. It just involves a lot of patience and a bit of trial and error.
 
Welcome to the club. The only thing that fixed the prednisone-induced insomnia for me was Amitriptyline. It worked like magic. I'd tried other sleeping pills with no good results. I think if you keep trying different meds, you should find something that can help you. It just involves a lot of patience and a bit of trial and error.
I definitely think some kind of prescription sleeping pill is the only thing that's going to help with the insomnia. I have 3-4 nights of not sleeping at all and then a few hours of sleep one night, and then they cycle continues. Still waiting for call back from GP and hopefully get something better than what I got yesterday.

ETA: posting this here too
Ugh don't know whether to scream or cry. Got message back from GP that it's just a case of waiting it out cause it's caused by the steroids. Won't give me anything else. Alternative is to go next Thursday and wait hours to see someone, or phone every day from Monday and try and get a cancellation (will take days).

Rang the number for the Gastro Clinic where I have an appointment for 16th December. After getting passed around 5 times, finally spoke to my GI's secretary but as it was after 4PM by then the Consultants or anyone that could help had already gone home Nothing I can do but phone first thing Monday morning. Don't know what to do about sleep till then.
 
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UnXmas

Banned
I definitely think some kind of prescription sleeping pill is the only thing that's going to help with the insomnia. I have 3-4 nights of not sleeping at all and then a few hours of sleep one night, and then they cycle continues. Still waiting for call back from GP and hopefully get something better than what I got yesterday.

ETA: posting this here too
Ugh don't know whether to scream or cry. Got message back from GP that it's just a case of waiting it out cause it's caused by the steroids. Won't give me anything else. Alternative is to go next Thursday and wait hours to see someone, or phone every day from Monday and try and get a cancellation (will take days).

Rang the number for the Gastro Clinic where I have an appointment for 16th December. After getting passed around 5 times, finally spoke to my GI's secretary but as it was after 4PM by then the Consultants or anyone that could help had already gone home Nothing I can do but phone first thing Monday morning. Don't know what to do about sleep till then.
Sorry, that's awful. Often doctors just don't understand how horrible not sleeping can be - in fact there are many symptoms where doctors just don't seem to get how hard it is living with them until we can finally get an appointment.

But it's really not "just a case of waiting it out" - there are ways of trying to fix prednisone-insomnia, you shouldn't just have to put up with side effects. If you have the option of seeing another GP, I'd definitely do so. My GP was willing to try me on different sleep meds until we found something that worked.

What over-the-counter meds have you tried?

Also, this didn't work for me personally, but I've heard others say that if they take their whole prednisone dose first thing in the morning, they sleep better than if they're taking any of it later in the day.
 

SarahBear

Moderator
Location
Charleston,
I definitely think some kind of prescription sleeping pill is the only thing that's going to help with the insomnia. I have 3-4 nights of not sleeping at all and then a few hours of sleep one night, and then they cycle continues. Still waiting for call back from GP and hopefully get something better than what I got yesterday.

ETA: posting this here too
Ugh don't know whether to scream or cry. Got message back from GP that it's just a case of waiting it out cause it's caused by the steroids. Won't give me anything else. Alternative is to go next Thursday and wait hours to see someone, or phone every day from Monday and try and get a cancellation (will take days).

Rang the number for the Gastro Clinic where I have an appointment for 16th December. After getting passed around 5 times, finally spoke to my GI's secretary but as it was after 4PM by then the Consultants or anyone that could help had already gone home Nothing I can do but phone first thing Monday morning. Don't know what to do about sleep till then.
I'm so sorry, Kelly. :( I had similar problems on Prednisone - I'd sleep maybe one or two hours every three nights. It was miserable. Eventually I started hallucinating from it. They wouldn't give me anything to help either (they said it was because I was underage) but they definitely can and it's ridiculous to make you suffer when it's that simple.

Hopefully the GI's office will be more helpful. Assuming they're the ones who prescribed the Prednisone, they're much more likely to help anyway. :hug:
 
I too had been struggling with prednisone induced insomnia, as well as all the other side effects. Ami helps and has little problems by taking them. Unfortuneatly, my GI doc put me on 25mgs at first and then said I could take 2. He messed up, he thought I was on 10mg and that I'd be taking 20mgs! Now i have to drop to 25 and will most likely have problems sleeping again because I was over prescribed! This is the same doc who put me on 40mg of prednisone for 3wks before confirming, with a colonoscopy, that I was having a crohns flare, which I didn't have!! Seems Im gonna need to look for a new doc. Not happy with how he's handling me at the moment!! Sorry, for the short vent.
 
I am now down to 5 mg ( 2 days now). Is it possible to just stop taking it ? I have been very sensitive to the drops. But I would rather tough it out than be on this stuff!
 
Unxmas I always take it about 8AM. Tried Nytol and the Chlorpheniramine the doctor gave me is OTC.

Sleep issues aside (still going to try ringing GI in the morning), is it normal while on Pred to find it harder to go? A week a go i was having 3 BM's a day and this week its only been 1, it's also changed from D to solid and the last few days quite thin but it only comes out little by little (and there's quite a lot of it). This is new to me as I only had D before but it can't be constipation because i still go once a day? Just a bit confused
 
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I always take it about 8AM. Tried Nytol and the Chlorpheniramine the doctor gave me is OTC.

Sleep issues aside (still going to try ringing GI in the morning), is it normal while on Pred to find it harder to go? A week a go i was having 3 BM's a day and this week its only been 1, it's also changed from D to solid and the last few days quite thin but it only comes out little by little (and there's quite a lot of it). This is new to me as I only had D before but it can't be constipation because i still go once a day? Just a bit confused
I had constipation early on taking Prednisone. I just take Miralax and that does the trick. :)
 

Jennifer

Adminstrator
Location
SLO
For people who are having issues sleeping, have you tried Benadryl (diphenhydramine). It's an antihistamine and is ok to take. You can start with 25mg and work your way up (I take 50mg every night because sleep aids and I don't get along). I have taken 100mg before but that makes me crazy tired the next day so I keep my max dose at 75mg if I need it. Its worth a shot if your doctors wont prescribe sleep aids or something to help you relax and sleep.
 
I had constipation early on taking Prednisone. I just take Miralax and that does the trick. :)
I'm a little bit wary of taking any laxatives after having so much D for so long. If I'm going once a day I don't think I can be constipated? I first assumed it was the Pred working correctly because of the more formed stools and the frequency reducing over the week. Maybe I'm just over thinking the whole thing and this is what getting back to normal feels like :lol:

Jennifer, they sound similar to the Chlorpheniramine the doctor gave me. Tried for a few nights and unfortunately they didn't work for me :(
 
For people who are having issues sleeping, have you tried Benadryl (diphenhydramine). It's an antihistamine and is ok to take. You can start with 25mg and work your way up (I take 50mg every night because sleep aids and I don't get along). I have taken 100mg before but that makes me crazy tired the next day so I keep my max dose at 75mg if I need it. Its worth a shot if your doctors wont prescribe sleep aids or something to help you relax and sleep.
Yes I took 50 mg Benadryl. I would alternate with over the counter melanin. Still never got any "quality" sleep until I got to 15mg pred.
 
I'm a little bit wary of taking any laxatives after having so much D for so long. If I'm going once a day I don't think I can be constipated? I first assumed it was the Pred working correctly because of the more formed stools and the frequency reducing over the week. Maybe I'm just over thinking the whole thing is what getting back to normal feels like :lol:

Jennifer, they sound similar to the Chlorpheniramine the doctor gave me. Tried for a few nights and unfortunately they didn't work for me :(
I was severely constipated as diagnosed by CT scan. At that time I was going a little every day or so. Just because you " go" doesn't mean your not constipated. Miralax is pretty gentle and not habit forming.
 
I'm waiting to see the specialist to discuss the results of my Colonoscopy and MRI but in the meantime I've been getting more ill again so I've had to increase the dosage of prednisolone again.

I was originally put on a six week course back in March but every time I've got down to 10mg, my symptoms reappear and they put the dosage back up. In September I had the dosage more than doubled from 10mg to 30mg and I was hoping that it might settle things down but once again I started to get the symptoms back when I was on 10mg. I've had it increased to 15mg this week and it's almost as if it feels like I have failed somehow.

:(
 
So sorry to hear you are having a tough time skybird14. I'm hoping that I only need this one course of prednisone. Things seem to be settling down. I'm upset with the weight gain and the high blood sugars (I'm also insulin dependant diabetic) as I've really had to up my insulin. Hang in there things will get better. The power of positive thinking does work. At least for me it has helped. Allows for me to keep on living and doing what I want to do in life. Would be so easy to just crawl under a rock and do nothing. I love being busy and travelling. Have done a lot of travelling this year, in fact I visited Bath in May with my son. Such a lovely town. We both fell in love with the UK. Can't wait to go back and see more. Travelling is what I love to do. Want to see lots and do lots. The diseases that I have will not stop me.
 
Having a real hard time on the pred the longer Im on it!! Even though Im down to 10mgs the side effects are getting worse! Im having severe mood swings of being extremely irritable and wanting to smash something to crying over what is happening to my body and life at the moment. I want to just get off now!! Ive gained 30lbs, my boobs hurt, my face is HUGE, I get hot flushes, tingling in my hands and forearms, very shakey, was hungry all the time but now feel sick to my stomach, losing hair on my head but have more on my face and have headaches!! With family home for the holidays and having an 80th bday party for my dad this weekend is adding even more stress ie; nothing to wear, emotional etc. I just want to crawl in a hole! I feel guilty asking my family for help or for their understanding cuz they have had to put up with this so many times the past 25yrs with this illness. I hate it!!
 
Just be aware that Benadryl and other antihistamines affect some people very badly. In my case, they make my body tired but put my mind into overdrive. Nothing worse than that. It was horrible. Like a sleepy zombie, but lying awake obsessing over stupid stuff. So if that happens to anyone, might be the diphenhydramine (Benadryl), not the Prednisone. Might sure be the Prednisone, but try a totally different sleeping aid before you conclude that.

Warning: The rest is long, you might want to look at cute cat videos instead.

Longtime Crohnie, I'm so sorry your doctor is not that great. Some are better than others about keeping up with best practices in diagnosis and treatment. It's an easy thing to understand: In some cases maybe 90% of their practice is folks who just need an antacid. And they're busy. A schedule for colonoscopies can be like Grand Central Station on a good day.

My former doctor in the US put me on a pretty damn steep Prednisone tapering schedule without mentioning that side effects might INCREASE even though I was taking LESS medicine. Totally counterintuitive. Who would expect that?

Or that Prednisone might trigger a manic episode since I'm bipolar.

What if someone isn't diagnosed as bipolar? Seriously, a too-steep taper could ruin their entire life for years to come. They might enjoy becoming the new owner of a cool orange helicopter bought on credit cards, but that right there could definitely ruin their whole life for years to come. Let's just say that by the time anyone (including me) figured it out, I knew a whole lot about helicopters.

I don't really consider it my doctor's fault at all. Rare side effects are rare; during an office-call follow-up you're not going to go through the whole damn list of unlikely-yet-possible side effects like a prescription drug commercial. Especially not for Prednisone.

BUT what's objectively true is that I am bipolar, he didn't connect the dots, and neither did my psychiatrist or anyone at the hospital or in the pharmacy. LOL, I might be the reason that warning is more prominent on the label now.

I am thankful every single day that I didn't lose my house, my job, my marriage, or my friends and family. But I came pretty damn close. I could have, very very easily, because everyone (including me) thought my moods and behavior were just understandable "carpe diem", Prednisone side effects, or some combo. Who's going to doubt someone who says they're totally fine, no problem, extra energy is just one of the side effects, especially when they've always been known for being very financially responsible?

Or that not being back to 100%, or even 60%, at work might be something other than an inability to suck it up and deal?

My doctor did his best for me. He put me on (only) Asacol for maintenance...he definitely cared and wanted to keep me from getting sick again: he had me on 24 pills a day. He (quite rightly, because at that point it was just anecdotal evidence) poo-pooed my silly idea that I'd flared right after takeoff because it was my 4th flight in a row. He wasn't a bad doctor...but recent research is that Asacol is healing, not preventative, and high altitude can cause flareups.

He was not a bad doctor or an uncaring doctor or even an out-of-date doctor. What he was (according to the nurses when I was hospitalized) was "one of 2 GIs on the Northside, when we really need about 6". To his credit, he has since added 3 very enthusiastic young colleagues to his practice and changed his entire staff when he heard that calls from patients weren't being relayed to him.

But...I could have been on a different or additional medication. I could have taken non-stop flights. I could have told my employers that I might be even less practical use when I got out of the hospital than I had been when in. I could have avoided $20,000 in credit card debt from a manic spending spree. I could have avoided ending up in the hospital again. I could have avoided making my 78-year-old father worried.

My point is, getting a different doctor doesn't necessarily mean that your present doctor is bad.

But the benefits of getting a different doctor can be immeasurable.

It can be difficult to tell when you need a different doctor. In your case, it's kinda clear.

Hope my long story helps someone out there somehow.

And PS, I LIKE Prednisone, and consider myself lucky not to have had any bad side effects! Except the edema. And the insomnia. But then again, I'm on fairly high doses of mood-stabilizing medication.

If you're having trouble, tell your doctor. And if your doctor won't listen, ask for a referral to someone who will.
 
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Thank you Goddess for your helpful words. Im sorry you had to go thru what you did all due to the one drug that can make us feel better for another chronic illness. I did put in a call to my GI doc re these increased side effect symptoms. The RN will go through all I have reported w him to see if they, the side effects, are getting worse due to weaning off to fast or if I can just get off. I was glad to hear that someone else got worse symptoms when weaning, just so I know its not uncommon. I told the RN that this is what happened to me years ago the last time I took pred which is why I vowed Id never take it again. Im looking forward to hear back from him. Im also going to call my psych to see if he has any idea how to help these breakdowns. I have depression and anxiety issues as well. Again thank you!!
 
Oh, I'm glad! Just saying, "yes, side effects can be bothersome" and "why not speak with your doctor?" didn't really fit the gravity of what I was hearing.

PS I also have less hair on my head and more on my face. It's a weird drug for sure.
 
Finally got some sleeping pills from my GP last Wednesday (Zopiclone) - never heard back from my GI despite leaving several messages with his secretary. Not really a good sign, but I have an appointment with him on 16th Dec so will see what happens then.

Down to 25mg Pred now, I've read symptoms get a lot better under 20mg? Zopiclone has been giving me about 4 hours sleep a night since I started taking it, last night was the first night I slept about 6 hours! Only woke up once instead of 3 or 4 times and taking a while to fall back asleep. If that continues I'll be happy :)
 
Location
Cali
wow so many story's, and seems we are all effected lil differently...

dx in feb of this year, and I have been on pred twice kina... b/c the 1st taper of 30mg down to 5mg in 90 days, dint really work, so they kept me on it... this time with a longer stronger tapper 20/15/10/5 for the next 120 days lol... Im at 15mg now...

My side effects seem to be weight gain so far, an I'm +35lbs and hungry all the time, also, I think what you call moon face, cause my face is pretty puffy some times, I haven't been on it long, only 8 months or so... hopefully that's it.

fortunately for me, I have no trouble sleeping, and no pain from the drug... but I also medicate with mmj, which has always helped me with sleeping, and any pain, especially when I'm on the toilet. for those curious about mmj lmk I bake with it too, you don't have to smoke it.

like most... I can not wait to be off the pred! just not sure what will happen when I am...
 
Goddess, have you found that there is a link between the combination of pred and antihistamines together that causes the mental issues? It seems all but coincidental that I too was taking Zyrtec when I went on pred and had some pretty wacky episodes.

Also, Rocky; 8 months is a long time to be on Prednisone! My doctor is worrying about me being on it for over a month! :eek:
 
WELL, YAY! :dusty:

Went to the doctor yesterday, and...this morning was my LAST tablet of Prednisone!

No more low-salt diet, although I found it VERY helpful in preventing swelling.

Main symptoms have been insomnia and acne. Hoping they'll fade away..l

I went 40 mg for 10 days, 30 for 10 days, then 20, 10 .'til yesterday,and now 0!

Wish me luck getting back to normal.
 
Zilla, sorry, should have made it clear...I was talking about antihistamines themselves having bad effects, not particularly in combination with Prednisone.

I never take them, period, so no experience of any possible interaction.

Hope all's going well for you.
 
I'm finally off prednisone!! YEAH!! Totally different being on it at this age than when I was in my 20s. I never used to gain weight, never got moon face, just mood issues that made me feel psychotic and I was on it a lot more often with higher doses then. Now at 45 I gained 30lbs, got moon face and major water retention. Stranger still, as I got down to lower doses I had more side effects. The mood issues started at 10mg(those are done thank God) and I got acne(which I have never had in my life) at 5mg! My moon face and weight have not gone down, been off for 5 days, but thought they would have started as I weaned. I also am experiencing terrible headaches I have never had before. Unfortunately my D is back but pain tolerable. Any ideas out there??

Meds now: Imuran 100mgs(same), Nexium 40mg(same), Wellbutrin 300mgs(same), Alprazalam .5 x2(same)...back up to 6 tabs a day of Lomotil, added Donnatol 3x day and down to 10mgs of Ami at night. Could Lomotil or Donnatol be the cause of headaches?

Please give some advice!! Thanks!!
 
A low-salt diet really worked for me! Last time the water retention was awful. My ankles swelled so much I couldn't wear shoes.

This time nothing...EXCEPT I ate a bowl of salty chili and my ankles swelled. Took a whole day of taping, soaking, and elevating my feet before they went back down, so salt was definitely a factor. The next day my face was swollen, but it went down.

Other than that I had no swelling.

My doctor said to check labels of any prepared food (canned beans and tomatoes in the chili are what got me...the one time I didn't check!). And don't add salt when you cook or eat.
 
Also, Rocky; 8 months is a long time to be on Prednisone! My doctor is worrying about me being on it for over a month! :eek:
Yes, it's preferable to avoid long-term prednisone use, but some of us need it all the time. I've been on prednisone since 1975, and I'm still alive after all these years because of the prednisone.
 
Zilla, sorry, should have made it clear...I was talking about antihistamines themselves having bad effects, not particularly in combination with Prednisone.

I never take them, period, so no experience of any possible interaction.

Hope all's going well for you.
Ah that's no worries! I just thought that we may have had some sort of revelation just then! :ylol: I've never experienced dizziness on it, I hope you're doing okay!

twokatmew Wow, I must say that it amazes me how you manage. I know my grandmother is struggling on a very low dose (about 2.5mg) daily for other non-crohn's issues, but I never knew high doses were sometimes permanently prescribed. I guess the more you know. :smile:
 
Goodluck! Wondering if anyone has got osteoporosis as a result of pred use? I'm 25 and was recently diagnosed as being in the osteoporotic range, I have a prescription for bisphosinates but am a bit weary of taking another med. I'm alrdy on too many!
 
I've made this comment before but it was a while ago, so will those who have read it before please forgive the repetition.

You have to balance the benefits of Prednisone/Prednisolone against the negatives. Nothing else gave me any relief at all and some medications made me really ill, so I was on Prednisolone for 25 years until I had a total proctocolectomy in 2000. The effects that I had experienced from the steroids - puffy face, facial hair, thinning of the skin, etc - went away at varying speeds. Interestingly, some people thought that I was more ill because my face had dropped in.

I have osteopoenia but I am now a 70 year-old woman, so it is not surprising and the osteopoenia has not deteriorated significantly over the last 10 years or so. I lead a very active life and travel extensively and have never had a fracture or broken bone.

Corticosteroids are not to be taken lightly and can have long-term side effects, but these can be monitored e.g. I have to get my eyes tested regularly for signs of glaucoma and cataracts.

What I am trying to say is that corticosteroids are sometimes a necessary evil, but when all else fails, they sometimes are necessary.
 
The thread makes pred seem pretty grim! Im on budesonide at the moment but it's not doing a great job (as predicted, as my crohns is partly in my large intestine) and pred is probably the next option.

I'm thinking of trying elemental diet instead of pred next - sure i dont get to eat food but it seems better than all of the pred side effects. Did any of you guys try elemental before trying pred? I read that they have pretty much the same success rate at inducing remission.
 
Can't you do both?

Don't get scared off...not everyone gets the side effects, or gets them that badly. And the stuff works.

Keep in mind that this is the "Miserable Prednisonites Club" thread on the "Vent Away" forum. People who did just fine are likely to be underrepresented.
 
Location
SC
Hi Goddess,
2 weeks ago I went to my GP and asked about the dizzy spells. - I was dizzy and losing my hearing whenever I stood up. She told me that was my body craving prednisone. I had just been off it about 1 1/2 months after being on pred for 11 months.

However, the pain in my joints and body got to be too much and the "D" came back so I took 10mg pred last night. :devil: I feel better today, hate I have to taper again, but even RX ibuprofen was not helping at all.
 
Hi! Believe it or not, the dizziness got better!

But maybe my body just hasn't realized there isn't going to be more Prednisone on the way.

I went from 10 mg-0, and it's only been 3 days. How bad did it get? I was so dizzy I pretty much couldn't stand...but the weekend and today, pretty much fine to nearly completely fine.

It sounds like for you it hung on for weeks and weeks. Did it come and go? Get better and worse?

My husband suggested taking 5 mg to Feed the Beast, but I'm not quite there yet.
 
Many have commented on the need to be on Prednisone and to remember that it is a drug that truly does help w inflammation, and this is true. It is a drug that works fast and usually good results. It does however come w side effects that are not always pleasant and seem to bother us. I don't know why it should, we live w feeling like shit all the time and when we feel better from this drug we complain about it. Its a funny thing :) For me, I hadn't had to be on it for a very long time and forgot just how crazy it can make you look and feel. This is a venting site, and you're right Goddess, the benefits don't always get represented on this site :)

Went to see GI today and still no real answers to slowing my guts down, but continue to experiment. Thanks to all who respond to this site and others. It has been very comforting to me!
 
Location
SC
The dizziness was intermittent. It was awful though. Feed the beast I like that!
3 doses of pred and I was feeling better but my feet are really swelling this time. I'm used to my face swelling, but my feet feel like they are going to pop. Thinking on call gastro - but he will probably tell me to go to 20mgs until I see specialist on 1/7. This specialist I want to say from research likes methotrexate to get of pred for those who are dependent on it.

We shall see. Glad you are better and the dizziness stopped.
 
Still doing fine, knock on wood. A low-salt diet really helped with the swelling. Keep your feet elevated, tape them if they are painful. Compression stockings (is that what they are called?) can help, too. And you can find lots of foot-soak recipes online.

Take care, best wishes!
 
I've now been on what was originally supposed to have been a six-week course of Prednisolone for nine months. Every time the dosage gets to 10mg, my symptoms re-occur and I've got to have the dosage increased again.

It's getting to the point where I'm seriously fed up with it all. I'm sick of the side effects and as they don't seem to be treating the flare-up enough to be able to come off the damn things anyway, I'm losing all faith in them.

They've turned me into a fat, hideous monster and I just want to cry.
 
Skybird14,
I can relate to your frustration with Prenisone. I've been on 40 mg since July 2013 and every time I tried to taper down, flare up. On my last taper, I got down to 5 mg and then had a flare. I'm back up to 15 mg and will proably need to go to 20 mg this week.
The side effects have been bad. I gained 25 lbs during this time and look like my head is going to explode. It doesn't look like I have much choice but to continue the drug therapy and hope for the best. I've still not been in a remission since my diagnosis.
Hang in there.
 
My son is in a flare and on his first course of prednisone. His doctor wants to keep him on it for 6 weeks... Started with 40 mg. Been on it four days. I have noticed flushing and he gets hot. I am getting nervous hearing how many of you have had difficulty tapering off completely. He is taking Methotrexate weekly (just hit 6 weeks, hopefully it will kick in) and newly added Apriso (new GI dr. wanted to try even though Asacol HD didnt work). When did the moon face appear and difficulty sleeping start. I am praying that he will be able to come off of it in the projected time and these meds will put/keep him in remission.
 
Rose,
I also have the hot flashes. Not sure it's from the Pred or one of the other 14 prescriptions I take. I would suspect it is caused by the Pred. My weight gain and moon face started about 2 months into 40 mg per day. I guess around September or October of 2013. For me, my appetite increased significantly being on the Pred. I'm not sure everyone experiences this but I sure did. I'm diabetic as well so my insulin packs the pounds on me as well. I did read an article that said once you take less than 10 mg od Pred each day, you can start to lose the weight. I just haven't been able to get below that level yet.
Like everything else with this disease, it affects each of us differently. My best to you and your son. Hang in there. :ghug:
 
My son is in a flare and on his first course of prednisone. His doctor wants to keep him on it for 6 weeks... Started with 40 mg. Been on it four days. I have noticed flushing and he gets hot. I am getting nervous hearing how many of you have had difficulty tapering off completely. He is taking Methotrexate weekly (just hit 6 weeks, hopefully it will kick in) and newly added Apriso (new GI dr. wanted to try even though Asacol HD didnt work). When did the moon face appear and difficulty sleeping start. I am praying that he will be able to come off of it in the projected time and these meds will put/keep him in remission.
I don't remember when the moon face started, but I would guess it took a couple-three months. Same thing for the insomnia, but I was on a higher dosage (though I will guess I outweigh your son as well).

What I found most debilitating was working through the day after being up all night, I would end up crashing around six or seven and sleep for 4-5 hours or so, then be up all night until maybe 4am, after which I would sleep for another 2-3 hours. Very rough cycle.

As I tapered the insomnia went away pretty quickly. Moon face (and buffalo hump) didn't fade until a couple of months after I was no longer taking the pred - but they did go away.
 
My son is only sixteen years old, diagnosed at 15. I have so much more to worry with prednisone because he is still growing. I hate all of my options, but I try to stay positive. My son took quite a few antibiotics when he was younger for recurrent ear infections. I swear that there is a connection...messes with the natural flora.. Would have done things different in hind sight. I pray for a cure, for my son, everyone affected today, and everyone that will be tomorrow. For now, I pray for remission and normalcy.
 

UnXmas

Banned
My son is only sixteen years old, diagnosed at 15. I have so much more to worry with prednisone because he is still growing. I hate all of my options, but I try to stay positive. My son took quite a few antibiotics when he was younger for recurrent ear infections. I swear that there is a connection...messes with the natural flora.. Would have done things different in hind sight. I pray for a cure, for my son, everyone affected today, and everyone that will be tomorrow. For now, I pray for remission and normalcy.
You did nothing wrong in giving him antibiotics. They are often necessary and have not be proven to cause Crohn's.

The moon face took maybe a couple of months to appear for me. The difficulty sleeping took less time to manifest, maybe a couple of weeks. It wasn't a sudden change; first I just woke up earlier in the morning (with much more energy than usual) then gradually I began taking longer to get to sleep at night as well. My doctor prescribed me amitriptyline which enabled me to sleep again.
 
Skybird,
What initial dose did they start you with 40mg or 60mg? Are you on anything else? My son is on Methotrexate and Apriso...so hopefully that will help him come off prednisone and keep him in remission. Many are taking 6MP...Which I wish my son took instead of Methotrexate... takes couple of months to kick in. Good luck to you!
 
Skybird,
What initial dose did they start you with 40mg or 60mg? Are you on anything else? My son is on Methotrexate and Apriso...so hopefully that will help him come off prednisone and keep him in remission. Many are taking 6MP...Which I wish my son took instead of Methotrexate... takes couple of months to kick in. Good luck to you!
Thank you,

I think I started on something like 40mg and am taking Azathioprine as well, however I've just seen my specialist and they're going to start me on Infliximab (Remicade) and then wean me off of the Prednisolone once I've started that.

I'm trying to be positive that this is going to work.

I've never tried Methotrexate but I hope it works for your son so that he can come off of Prednisolone.
 
Anyone else suffering very intense emotions with Pred? I was supposed to go to my boyfriends on Saturday night and after spending an hour doing my makeup and hair I burst out crying because my face is so swollen, managed to calm down, redo my makeup and then went to go into my chest of drawers which has a really annoying habit of all the drawers not closing properly which really caused me to lose my temper and kick the drawers (and snapped it...clever!) I ended up having to leave the room and couldn't stop hysterically crying for over an hour. I can laugh about this now, but I now have a very concerned boyfriend and I think my dad is just slightly confused as to how the steroids caused me to freak out like that.
 
Amanda89,
I totally know where you are coming from. I was so full of rage while on Pred. My husband jokingly called it "roid rage"
Make sure to share all of these feelings with your doctor. If you start to become depressed there are options to help you. They had to put me on Ciprolex and anti depressant and it was the bet thing I could have done!
All the best to you!
 
haha yes! I'm so glad it's not just me. That was what I said to my dad that it felt like "roid rage" I will definitely keep an eye on my emotions for the next week or so, then if it's still bad I'll have a chat with my doctor. I feel quite calm today, probably due to being tired from the insomnia. Gotta love Prednisolone, it does great stuff but with great side effects.
 
Hey Amanda89 you are not alone, my last stint on preds I was so angry and emotional I thought I was going crazy! I also think that the sleep deprivation doesn't help things. I have never had such a reaction to steroids before and I have had crohns for 26 years, my poor husband didn't know which way to go. You need to show your dad some of our responses and it might help him to understand that it is just side effects to this rotten drug that we are all stuck with from time to time and they will go away once you taper down. Good luck.
 
Major "roid rage"!!! I swore I'd never go back on it again 13 years ago cuz I felt like I was psychotic!! This last time I was on it the mood swings came later but very depressed due to weight gain. But I could fly off the handle so easy, my poor husband got the brunt of it :( The things we as well as our family and friends must endure so we may feel better.
 
I have been on it 2 weeks now and I definitely have felt more emotional than usual. It works both ways with me, feeling really positive one minute then really negative the next. It is heightening my feelings for sure.

So far I'm not sure it's helping me much as I still have a stricture, which is really tight after every meal and causing me a lot of discomfort. I'm still getting some flare ups, so the jury is out on whether Pred is effective for me at all yet
 
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