Prednisone!

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tiloah

tiloah

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Jun 24, 2010
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Anybody out there on Pred right now? Is it helping your symptoms? Are you having crazy side effects?

My joints are FINALLY starting to hurt less. :thumleft:
 
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Prednisone would be a miracle drug for me if only it didn't make me so NUTS while I'm on it (I'm on it now). I can always rely on it to get me out of big Crohn's trouble, but at a price.
 
I am on prednisolone rather than prednisone. I have been on prednisolone since oct 10. Just had an increase to 40mg last week and its starting to work its magic. Less bleeding etc etc. Hoping to be able taper soon though.
 
muppet said:
Prednisone would be a miracle drug for me if only it didn't make me so NUTS while I'm on it (I'm on it now). I can always rely on it to get me out of big Crohn's trouble, but at a price.
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Aren't you self dosing? You need to see your GI!
 
littlemissh said:
I am on prednisolone rather than prednisone. I have been on prednisolone since oct 10. Just had an increase to 40mg last week and its starting to work its magic. Less bleeding etc etc. Hoping to be able taper soon though.
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Prednisolone is the metabolite of Prednisone, so we can pretend it's the same. I'm glad to hear it's working for you! I hope the side effects aren't too harsh and the taper goes well.
 
Hey diesanduhr,

Are you just taking it for your joint pain? I hope you're not having bowel issues so soon after your resection? Glad it's making you feel better either way :).
 
diesanduhr said:
Aren't you self dosing? You need to see your GI!
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I'm going to ASAP. In my defense this is my first self dose in years. I just don't have time to stop for my own stuff right now. I'm focused like a laser on Sarah and Izzy. I'm back down to 20 and doing pretty good. Yes I know how dumb and reckless I must sound but I have LOTS of experience with this stuff. Last week my doc probably would have admitted me and started solumedrol but I'd have lost $1000 in wages and that would have been absolutely devastating to my family right now.

I promise not to kill myself. :) I certainly do not recommend self treatment to anyone.
 
Ian said:
Hey diesanduhr,

Are you just taking it for your joint pain? I hope you're not having bowel issues so soon after your resection? Glad it's making you feel better either way :).
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Oh, no. I was tapering off of Prednisone after my surgery, and that's when the joint pain got out of control. When I tapered all the way off, it was monstrous! But now it seems to be panning out a bit.
 
I tapered from 30 to 25 mg. It was a rough couple days, but I have adjusted. I will be tapering to 20 mg on Monday. I will stay there for about 7-10 days before tapering again. Tapering sends me in to a crashing depression, with lots of jitters. The other drugs I am on seem to really help with that this time around on pred. I will never take pred again with out the other drugs. I am on zoloft, ativan, and imovane to deal with all the side effects from the pred, but I deserve to be comfortable.
 
Wow! That's a lot of meds just so you can take Prednisone. It's awful what it does to us sometimes. I hope your taper goes ok.
 
Does parked along the side of the road unable to drive anywhere and laughing to myself for an hour while compulsively seeing how much I can see all at the same time count as crazy? If so, then yes.
 
Akcat yes! That must have been awful (although if you were laughing, perhaps it was enjoyable at the time?). Hopefully tomorrow your body processes it a little bit better. Maybe call your doc and see if you can try 20 in the morning 20 at night, or if they recommend a different plan?
 
diesanduhr said:
Wow! That's a lot of meds just so you can take Prednisone. It's awful what it does to us sometimes. I hope your taper goes ok.
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Yep, I have never been so medicated in my entire life, short of being post-op. I cant wait to get off all these drugs.
 
diesanduhr said:
Oh, no. I was tapering off of Prednisone after my surgery, and that's when the joint pain got out of control. When I tapered all the way off, it was monstrous! But now it seems to be panning out a bit.
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I'm in the same situation. Starting tapering before surgery, continued tapering after and had no problems until a few weeks ago when my hip joints really started bothering me. I've only been completely off the stuff for a week, but I do think things are getting better, and I'm lucky that OTC painkillers work perfectly for my hip pain.
 
HI Diesandur, When i was on Predisone i had lots of energy and feeling wonderful, but now that i am off it. i have returned to my normal self. i can barely prepare food for me to eat and left me with little energy. But, it had its side effects i started getting aches all over my body, but, it soon passed and it cleared up my crohn's flare up so that was a good thing about it. so it worked out fine in the end. best wishes.
 
muppet said:
Prednisone would be a miracle drug for me if only it didn't make me so NUTS while I'm on it (I'm on it now). I can always rely on it to get me out of big Crohn's trouble, but at a price.
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Ditto!!!!!!!!!!!! I'm totally manic, have really painful facial acne, am either nauseaed or starving or both (how is that possible????)... etc, etc, etc....

And this is all at my stable dose (30mg) - I can't even think about what's going to happen when I taper... :eek: At least it's almost stopped my crohn's bleeding...
 
I'm tapering now from 60mg a day, on 30mg at the moment.

I get funny taste, I tremble all over all the time, my legs are like jelly I can not run or move fast without falling over, my knees are the worst I can't kneel down it's hard to step up onto things. I have a feeling of heavy weight on my body every day. I go to bed at 2am and am usually up at 4 30am unable to sleep, Night sweats soon as I nod off any time of day I am drenched in sweat. Oh and the cramps are hell too. I also get spasms every now and again that go through my whole body and I can't control them, makes me jerk like with my pulse.

Problem is I still get a little blood in the loo some days.

I don't like this drug. neighbours say I am looking better,....it's moon face lol
 
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Why is prednisone worse when you start to taper???

I went down to 25mg today, the last two nights I have had joint pain in my knees so bad that they were restless from about 11pm to 2 or 3am. I've been sleeping in my recliner in the living room most nights. At least the crazy night sweats have stopped, when I was at 40mg I must have woken up 3 times a night to change my clothes.

I take all of my pred at one time instead of breaking up the dose during the day. It seems to me that if I take it later in the day I stay up later at night. Would some of my other symptoms even out if I took 15mg earlier and then 10mg later? Would that even matter? I'm trying to lessen these crazy side effects as much as I can!
 
SarahAnne - It might be worth a try spreading them out? I think the reasoning behind taking it all in the morning is exactly what you described, so that you get the energy during the day and it doesn't keep you awake at night. Spreading the dose out may "spread out" some of the other side effects, however.
 
Hi Nic,

I (touch wood) haven't yet had any crazy side effects from Prednisolone yet and I've been on it since June....although I do seem to sweat a hell of a lot more usual!

Rachel x
 
I've been wondering about this too. Since I've gone down to 15, I've been really tired, nauseous and dizzy. I'm assuming it's the Pred taper. It's hard to know sometimes when you're on more than one med.
I've read in a couple of places that splitting the dose can help with a taper. And also, when you get down to little amounts, taking it every other day.
 
Grumbletum said:
I've been wondering about this too. Since I've gone down to 15, I've been really tired, nauseous and dizzy. I'm assuming it's the Pred taper. It's hard to know sometimes when you're on more than one med.
I've read in a couple of places that splitting the dose can help with a taper. And also, when you get down to little amounts, taking it every other day.
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I had a follow-up with my GI the other day and I *thought* my dizziness had been caused by after effects from the surgery, but my GI seemed pretty sure it was tapering off of the Prednisone. So it might not be that uncommon. Bleh.
 
Yep, bleh is right! I think my blood pressure is low and Dusty reckons it could be the case. It was while I was in hospital. Will ask the IBD nurse about it when I see him on Thursday.
 
I am on pred now too and was hoping th Dr. would tell me I could continue tapering. I was on 50 to start and was down to 20 when I had my appt. She wants me to stay there till Dec! I have gone back up to 25 cause it seems to be my magic number for pred and will start tapering again end of Nov or early Dec. I get sweats at night and do seem to sweat alot during the day too. I also have bad joint pain, in my knees and hands especially but I thought it was just the Imuran. I really have no idea what symptoms are from what, but hopefully the Imuran will work.
 
Grumbletum said:
Yep, bleh is right! I think my blood pressure is low and Dusty reckons it could be the case. It was while I was in hospital. Will ask the IBD nurse about it when I see him on Thursday.
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Ha, yes, exactly. The Pred made my BP go and stay low. I was on Propranolol and I'm glad I stopped it. It makes sense that that would cause it.
 
debbien said:
I am on pred now too and was hoping th Dr. would tell me I could continue tapering. I was on 50 to start and was down to 20 when I had my appt. She wants me to stay there till Dec! I have gone back up to 25 cause it seems to be my magic number for pred and will start tapering again end of Nov or early Dec. I get sweats at night and do seem to sweat alot during the day too. I also have bad joint pain, in my knees and hands especially but I thought it was just the Imuran. I really have no idea what symptoms are from what, but hopefully the Imuran will work.
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Wow! That's a long time to hold steady on Prednisone. Is she doing that so the Imuran will have time to "kick in?" I hope your side effects are tolerable while you wait.
 
Ya, it is to let the Imuran work. I have been on and off pred since April, mostly on so I am looking forward to finally getting off in December hopefully. I do not have too many side effects I don't think. I feel better than when I am off it
 
I am down to 20 mg and still doing good. I lost my hyper moments, and I am kinda sad, because my house was much cleaner. lol.
 
3 years on the stuff, it's the worst medicine that will save your life.

It was a trade off, bad side effects or internal bleeding.
 
Lydia, I am at 25mg now and I'm starting to feel the manic energy wear off, it's my favorite thing about prednisone because I feel like I can get anything done! Unfortunately, it is still giving me hot flashes at random times, I'm sitting around sweating while doing absolutely nothing. I split the dose up yesterday and thankfully no jerky legs last night! I did wake up at 3am but fell back asleep at 5am (only to wake up at 6:15am to get the kids ready for school, yawn ).

I have noticed that I am starting to get tired in the afternoons and have to nap. As long as my legs keep still I guess I can deal with the rest.
 
SarahAnne said:
Lydia, I am at 25mg now and I'm starting to feel the manic energy wear off, it's my favorite thing about prednisone because I feel like I can get anything done!
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I totally agree with this. When I first started Prednisone I couldn't sleep but I didn't care! Alas, it went away as soon as I began tapering.

Hooray for no "jerky legs" though!
 
Hi. I was on Prednisone after my first flare. 4 months ago. I slowly tapered off. The worst part of prednisone was the insomnia! After I tapered off that, inflammation came back. Took 6MP. That stuff is worst Prednisone! Docs took me off of it because severe headaches. Now im on pentasa, entocort, tramadol and promethazine. Finally starting 2 feel better.
 
This 2nd round of Pred for me has had no side effect of high energy or anything else. I'm on 30 mg, and although I think that 'finally' the bloating has left me, I am still having pains/cramps. It's been 2 weeks now, so maybe another week will make a difference with the cramps. Dr. did give me hyso.....to help with cramps. Helps a bit.
 
I went down to 15 mg today. So far my crohns is still behaving. We will see how I am doing after a week. I am really optimistic.
 
I'm just beginning a pred taper, dropped to 30mg yesterday, however my symptoms haven't ever been totally under control during this last 2 month steroid course. Anyone else have that experience? My BMs dropped from 5-7 down to 1-2 a day so that's a definite improvement but the D and gas have yet to disappear. Now that I'm tapering I'm concerned things are going to get bad again.
 
Yes. I've been on it for 6 months and it didn't completely get rid of the symptoms and a colonoscopy showed I still had a lot of inflammation. Have seen a bigger improvement since starting the Infliximab.
 
I was on a tapering dose of prednisone before my surgery, I had gotten down to 15mg!!

No moon face, but lots of extra facial hair (ugh!), a little extra acne, and arthritis in my joints.

Back up to 40mg after the surgery. Boo. I'm pretty sure the surgeon will start to taper me back down when I go in for my 2 week follow up appointment. I was just so close to being done!!!

All of the manic energy doesn't help because I literally can't lift anything heavier than my purse, so all housework is out. No reaching or bending. I'm going crazy with boredom!

BUT, I can eat now. And it is so incredibly awesome. However, the hair thing is killing me. Pretty soon I'm going to look like Animal from the Muppets. :eek:
 
I just started on Pred two weeks ago at 40mg, I tapered down to 35mg on Wednesday with instructions to reduce 5mg per week - I feel like it might not be enough time to kick in as I still have pain and bleeding at night, does everyone taper so quickly? I am still waiting on my test results so don't have a follow up appointment with the specialist yet but they should be back within the next week, so I'm just following the instructions I was given.. There is definitely less urgency and on Monday night I didn't get up to use the bathroom once! But last night was back in the toilet all through the night and into today... boo!
 
HI Izzy, I suggest you call Dr. to let him know your symptoms have not eased up yet. I've been on Pred twice now, both times for 4 weeks before I start tapering, today is my first taper off the 2nd time. Are you on other meds? Maybe that's why.
Judy
 
I am down to 10 mg now. My bowels are a little bit sore, but I am not cramping and I still only have 1-2 BMs per day, with no pain. I can tell there is a little inflammation going on. I dont know if I should take a higher dose or just stay at 10 mg for a couple weeks before trying to taper again.
 
Hi Judith, I'm also taking Asacol 3 times a day - I feel alright during the days it's just my nighttime antics that are still causing a bit of discomfort. There is definitely a noticeable improvement since I started taking the meds compared to nothing at all so maybe I'm just being a bit impatient, but I will call the specialist. I know my sigmoidoscopy showed severe ulceration of the distal sigmoid so I guess that might take more than a couple of weeks to clear up...

And on an awesome note, one of my eyes has gotten completely gooey in the last couple of hours, so looks like I have an eye infection to deal with too yucckkkk! I have had a nasty cold recently so it might be related, what luck! :ybatty:
 
Aww, I'm sorry about the eye and the cold lizzy. I hope that clears up soon for you. Dang, it never rains it pours right?
 
Aw thanks, haha that's right it happens all at once doesn't it? I think my immune system probably isn't the greatest at the moment, oh well what can you do? Just keep smiling' :luigi:

On a happier note I am cooking a homemade chicken pie tonight with ingredients from my "safe" list, hope it turns out well! Cooking really makes me feel good even though I can't make all of my favourite dishes right now, I am indulging in a lot of Masterchef tv to make up for not actually being able to eat everything I want to (food fantasies haha). :chef:
 
I'm on Prednisolone at the moment (40mg.) Isn't the end product in our system Prednisolone, regardless or whether what was taken was Prednisone or Prednisolone?

I have definitely noticed some wierd stuff going on at the moment. I think I'm getting an obsessive and compulsive disorder like side effect with mine. Last night I was compelled to clean, and didn't stop til 3am. I woke up at 7 this morning. I also found myself taking notes of stuff I usually wouldn't and I'm getting random laughing fits and hyper moments. These tablets are messing with my head!
 
zilla7777 said:
I'm on Prednisolone at the moment (40mg.) Isn't the end product in our system Prednisolone, regardless or whether what was taken was Prednisone or Prednisolone?

I have definitely noticed some wierd stuff going on at the moment. I think I'm getting an obsessive and compulsive disorder like side effect with mine. Last night I was compelled to clean, and didn't stop til 3am. I woke up at 7 this morning. I also found myself taking notes of stuff I usually wouldn't and I'm getting random laughing fits and hyper moments. These tablets are messing with my head!
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Totally normal for some people. I started obsessing about dental care, brushing and flossing way more than I ever have. My house was clean, my closets and dressers were all sorted and organized, and I walked the dog, and exercised daily, and I still had energy to pace back and forth. I also had giggle fits and panic attacks.
 
Oh I had all that wonderful energy the first time on Prednisone, and it came at a good time as I was nursing a sick husband. This 2nd time has not offered me much in the way of energy but has seemed to help my stools a little.
 
I just found his forum and am so glad I did! I was diagnosed 13 days ago with Crohn's Disease. I have been on 40mg Prednisone for 13 days now and am not any better at all. Luckily I have not really had side effects other than terrible knee pain/stiffness. However, the flare up has not really gotten any better. The bleeding stopped when I did the clean out thing for the colonoscopy in the hospital and has not returned but other than that the rest is still the same. The GI told my Husband (after the colonoscopy) that within 4-7 days on the 40mg Pred. I would feel great again...like I said, it has been 13 days now and still nothing.

Has anyone else had this happen? I see the GI for the first time since the hospital/colonoscopy this comig Monday but feel really helpless and frustrated right now. This CD thing has a steep learning curve and I feel so lost! What do they do if 40 mg doesn't help?

Thanks for listening and any advice, thoughts, stories would be greatly appreciagted!
 
Hi suschex.......oh, I have been where you are now, and not so very long ago. I'm still confused and searching. The Prednisone might need some help and your Dr. should give you another Rx when you see him on Monday. What is your flare up like? Pain? Diarrhea? Constipation? Are you watching your food intake for now? there is so much to learn, and this is a great place to learn from and ask questions.
 
Hi JudithC...thanks for responding! The flare up started as diarrhea (really just solid liquid and mostly blood), throwing up, fatigue, weakness, pain/cramping but not severe. There was a stomach virus going around so that was my best guess. When the doc saw my stool sample he put me in the hospital and did the colonoscopy. He said it looks as if I have had CD for many, many years just w/o knowing. I am 38 and can remember these things as far back as high school years. Although I have had far more severe constipation over the years than diarrhea - not sure how that ties in or if it even does. Right now my food intake is broth, bread, plain potato and water. The diarrhea and bleading stopped when they did the prep for the colonoscopy. Now I am just left feeling like evey cell in my body is infected with something, weak, nausea, cramping/pain (still not severe) I just hurt all over...is that normal...isn't this GI, not whole body?

Sorry to ramble on and on...I think I am still trying to wrap my head around all of this since it is new but at the same time has been with me for 20 years or so and I never knew that I didn't have to live feeling this way.

How are you doing? Do you have new diag. CD also? Is it controlled?
 
Sorry to ramble on and on...I think I am still trying to wrap my head around all of this since it is new but at the same time has been with me for 20 years or so and I never knew that I didn't have to live feeling this way.

Hi Suschex.......I could have quoted each of your words as mine. Now I'm wondering, with finally a diagnosis, will anything change? And the hurting all over I think is part of not having enough vitamins and nutrients in our system. I found I had a serious Vitamin D deficiency (have yours checked) and I do feel less achy now that I take a D3 supplement. I keep reading and listening to others, especially on this forum. At least I know that I haven't lost my 'marbles', well, at least not yet...lol Have a good Sunday.

Judy
Prednisone 25mg
Pentasa 4000
Azathioprine 125
hyocyamine for cramping
Vitamin D3
 
Hi suschex, welcome to the forum. I am sorry to hear you were diagnosed with this awful disease.

While it is a GI disease, the effects that can result from it affect every part of the body. Many of us experience pain in other body parts, chronic fatigue, etc. IIRC, at least one of our members had someone tell them they couldn't have constipation with Crohn's. Well, I frankly don't believe that's true because we have many members here who have presented with that.

While CD is a chronic disease that can be rough at times, it is liveable. Maybe check out our success stories forum? I can remember how overwhelming it was to be diagnosed and all the worries that ran through my head. There may be challenges in the road ahead, and you may not be prepared for them right now, but when they happen you will be.

I wish you the best of luck in your journey and I hope you find a treatment that works well for you. Have they put you on a maintenance medication to go with the steroids? I believe depending on your disease course and severity, saying you are going to feel "great" is a bit of an overstatement. But you should always, ALWAYS voice your concerns to your GI. There's no reason to not say something. Now it's my turn to apologize for "rambling on."
 
Judy - First of all no worries about rambling on. That's what this place is for! (In my opinion, at least).

Things should change for the better after being diagnosed. There should be a difference between untreated and treated disease. If nothing else it should keep you from worsening. But if you don't feel like you're getting better you should discuss your treatment plan, because you should be able to find something that works for you. Good luck.
 
Lydia said:
Totally normal for some people. I started obsessing about dental care, brushing and flossing way more than I ever have. My house was clean, my closets and dressers were all sorted and organized, and I walked the dog, and exercised daily, and I still had energy to pace back and forth. I also had giggle fits and panic attacks.
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Ah well that's good. It seems to be the only side effect that can partially serve as a benefit. :lol: It kinda helps me catch up with everything I missed being away from school and to gain some weight back. Got to admit though, some sure do suck! Nothing to do with your energy when all your joints cramp and you get migraines that start triggering after taking pred then not easing up til a year later. :(
 
im on 40mg a day and have been for 2 weeks, and will be for another 2 weeks. I hate taking so many tablets everyday, and i've got more spots and im putting a bit of weight on..

it better help!!!!
 
Hi Blue! Hoping that it helps you too!

I have to say that in the couple of days since I last posted that my symptoms have eased more and my energy has increased - I haven't had any manic episodes that others here have experienced but I do notice a mood and energy lift that lasts throughout the day. Some nights I don't feel like sleeping until really late (I need to force myself to go to bed as I get up early for work), and then other nights I crash hard as soon as I get home. My appetite has definitely increased by a lot. I'm hungry all the time! But that's better than feeling sick all the time and I really need to gain some weight. I see my specialist for the first time since being diagnosed on Friday, lots of questions to ask!

Suschex, how did it go at the GI today? Hope you are starting to feel better, the first 2 1/2 weeks were bad for me too, I'm only just starting to feel better. Hang in there! :)
 
The GI went well. I found out that my CD is severe and that there is extensive damage throughout my entire colon (due to the flare up having been active for almost a year w/o diagnosis). So it now makes complete sense that I am not better yet. I wil continue on the 40mg of Prednisone for a few more weeks. The doc is doing all the initial testing before putting me on Humira or 6MP. I know nothing about either but will research them between now and when I see him next in 2 weeks. Although I still don't feel much better physically, I feel much, MUCH better mentally!
 
Glad to hear you are doing better mentally. Humira and 6MP are good drugs that have helped a lot of people. You can read a lot about it here and other places on the internet. I hope whatever you decide to go with it helps a ton. Good luck.
 
Blue - It better help!

Lizzy - Glad to hear your side effects are easing up. I hope you and your GI come up with a good plan that works for you and they do a good job answering your questions.
 
Diesanduhr - Thank you! The doctor also gave me Tramadol for pain and Zofran for nausea...they have helped so very much! I guess after haing this w/o knowing it for so many years I just didn't realize that I was hurting and feeling ill all the time...sounds really stupid saying I know but maybe it makes some sense...
 
Starting back on it again tonight ... 40 mg... GI visit and x-ray earlier today to follow up on some flare-like symptoms showed some issues
 
I have tried to be patient and wait for the Pred to work but I am just not sure now. It seemed that days 3,4,5 and maybe 6 of taking Pred. I felt better...enough to sort of live life as a Mom, Wife, Human but then it seemed like it stopped and now 18 days in I am not sure how much longer I wait for it to help. Has anyone else had Pred help a bit early on and then seem to stop helping??? I am seeing the doc again on Nov 3rd and he wants to put me on Humira and/or 6-MP (I am not sure if he meant both or just one or the other...is both a common way to go?)

Anyone else have a similar situation?
 
Is it possible to take Prednisone for a few weeks, and afterwards still have the benefits of it after stopping?

Im just curious. My GI Doc is considering putting me on it for 3 weeks, and Im thinking... why? if im gonna be back to my old self afterwards.
 
Thanks Diesanduhr, and Suschex glad to hear you're feeling more positive! I haven't been on pred long enough to really gauge its effectiveness, just taking it one day at a time. I know it took me about 2 1/2 weeks before I started feeling better.

I saw the GI today and have officially been diagnosed with Crohns - I'll keep tapering the pred and then hopefully move onto maintenance medication 6 weeks from now. He was very kind and in no hurry to move me on (I'm so used to that with GPs!), and answered all my questions. I've got the number of the IBD nurse, and he also advised that I should find an online Crohns community for support so I was happy to tell him I've found this wonderful place!

It has been a rough day tummy-wise though, I'm so bloated I look like I'm 4 months preggo! I've gone to the bathroom about 10 times but I just don't feel like I've "completed" anything. It's been annoying, but hopefully tomorrow is better. I've started keeping a food diary so hopefully I can get my diet in order and limit these bad days. The GI recommended I stay away from processed food, but that everyone's diet is different (which is the consensus here). I succumbed to temptation and had chocolate yesterday AND today (it was a special fundraising morning tea at work :shifty:) so I think I know the culprit. Damn!
 
suschex said:
I have tried to be patient and wait for the Pred to work but I am just not sure now. It seemed that days 3,4,5 and maybe 6 of taking Pred. I felt better...enough to sort of live life as a Mom, Wife, Human but then it seemed like it stopped and now 18 days in I am not sure how much longer I wait for it to help. Has anyone else had Pred help a bit early on and then seem to stop helping??? I am seeing the doc again on Nov 3rd and he wants to put me on Humira and/or 6-MP (I am not sure if he meant both or just one or the other...is both a common way to go?)

Anyone else have a similar situation?
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This happened to me (way back in 1991)after my diagnosis. I was on prednsone and feeling fine but whe I tapered past a certain point things started to get worse (the dosage threshold this was at escapes me). This was in the pre Humira and Remicade days and ended up going into the hospital for a bit on an elemental diet to get things under control. That got things under control (eventually tapered off the prednisone after a couple of years and have been on maintanance meds since) but have to had to go back on prednisone a few times over the past couple of years to get some flares under control.
 
lizzy16 said:
Thanks Diesanduhr, and Suschex glad to hear you're feeling more positive! I haven't been on pred long enough to really gauge its effectiveness, just taking it one day at a time. I know it took me about 2 1/2 weeks before I started feeling better.

I saw the GI today and have officially been diagnosed with Crohns - I'll keep tapering the pred and then hopefully move onto maintenance medication 6 weeks from now. He was very kind and in no hurry to move me on (I'm so used to that with GPs!), and answered all my questions. I've got the number of the IBD nurse, and he also advised that I should find an online Crohns community for support so I was happy to tell him I've found this wonderful place!

It has been a rough day tummy-wise though, I'm so bloated I look like I'm 4 months preggo! I've gone to the bathroom about 10 times but I just don't feel like I've "completed" anything. It's been annoying, but hopefully tomorrow is better. I've started keeping a food diary so hopefully I can get my diet in order and limit these bad days. The GI recommended I stay away from processed food, but that everyone's diet is different (which is the consensus here). I succumbed to temptation and had chocolate yesterday AND today (it was a special fundraising morning tea at work :shifty:) so I think I know the culprit. Damn!
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Ergh the bloating is terrible! I was getting that a while ago whilst on it, after eating beans I was bloated and crampy for days! On a funnier note though people were saying I was looking... Healthier. Males should not look pregnant. :ylol2:
 
Ha ha Zilla - it's true men get the term "beer gut" thrown at them more, don't they! :ylol: I thought I had actually put on some weight because my tummy's so big (still have stick arms and legs though), but they weighed me at the hospital today and I'm still only 49kg (I'm only 5'3 so still a healthy BMI), it's just bloat! Ughh. Not feeling as crampy anymore though, hopefully it's settling down for the night...
 
^ I've heard/experienced the beer gut my 1st time on pred (40mg), im now on my 3rd 'cycle' with 30mg and I am restless, unusually happy and then sometimes just plain depressed :(. So from what I gather pred has different effects on everyone?
 
gdhillon said:
^ I've heard/experienced the beer gut my 1st time on pred (40mg), im now on my 3rd 'cycle' with 30mg and I am restless, unusually happy and then sometimes just plain depressed :(. So from what I gather pred has different effects on everyone?
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Yep definitely can have different effects on everyone and even different effects on the same people each time they take it or at different doses. It's a fun one!

Hawkeye I'm sorry to hear you're back on it.

How is everyone else doing at the moment?
 
suschex said:
Diesanduhr - Thank you! The doctor also gave me Tramadol for pain and Zofran for nausea...they have helped so very much! I guess after haing this w/o knowing it for so many years I just didn't realize that I was hurting and feeling ill all the time...sounds really stupid saying I know but maybe it makes some sense...
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I understand this perfectly. It's like your baseline of pain and nausea you've had for so long you thought it was normal. I thought my symptoms were what everybody had/felt until my GI went "Uh, no."
 
diesanduhr said:
I understand this perfectly. It's like your baseline of pain and nausea you've had for so long you thought it was normal. I thought my symptoms were what everybody had/felt until my GI went "Uh, no."
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It's just crazy isn't it to realize you have been in pain and not "know" it because it has been so long and you have been told so many times that there is no reason for the pain or better yet that what you are feeling is not pain!

Looking back I bet this is part of why I didn't find labor with my kids as bad as people said it would be....at least the early stages, after that the epidural makes it all so easy....
 
diesanduhr said:
Yep definitely can have different effects on everyone and even different effects on the same people each time they take it or at different doses. It's a fun one!

Hawkeye I'm sorry to hear you're back on it.

How is everyone else doing at the moment?
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Diesanduhr. Thanks. Been on it since Thursday with no real side effects yet except that I felt really energetic Saturday and was on the go most of the day. Ever run while being on it - I am still trying to get back to the running? If so what was the dosage and were there any bad effects?
 
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Well, after 7 months, I'm finally off it - took my last tab on Saturday :) Between 20 mg and 10 was the hardest stretch for me. The taper seemed to be lowering my blood pressure resulting in nausea and dizziness.
No return of pain and bladder issues ( caused by abscess and fistula ) which is brilliant. I have been vert tired last couple of days and had significant joint pain, but I had a Remi infusion and had to up my dose of Aza last week, so either (or both) might be the cause. Hard to know sometimes when you're on multiple meds.
Am looking forward to deflating!!
 
gdhillon said:
Has anyone experienced the long term side effects of it? (osteoporosis)
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Yes left knee with Moderate Osteo... but I have a friend who is only 29 and underweight who has Osteopenia from very high and long term doses.

I just finished a 2 week quick taper today, not bad in the symptoms but livable.
 
Im sorry to hear that guys. I can legitimately say I have a 'love and hate' relationship with pred.

So, is osteo like arthritis? I have been feeling weird somewhat random pains in my knees and ankles, is this a sign that its starting?
 
I had a Dexa scan when I was 24 that showed I already had a little bone density loss, I hadn't been on pred for a long time at that point but I had been on really high doses (like 60mg for several months before tapering). I also have every other risk factor, I'm tiny, white, underweight, USED to smoke (so glad I quit, what a terrible effect on my Crohn's!), drink tons of coffee, etc.

I have arthritis in my hips and knees mostly, tapering the pred last time made my arthritis go crazy when I got to about 20mg.

I had been tapering before my surgery and I was down to 15mg. I'm back at 35mg right now and tapering by 5mg a week again. I'm really pissed too, because I was almost over all of the bad side effects too. Now my face is starting to round out. No big deal yet, I was totally underweight and my cheeks were hollowed out, but another week or two and I'll look like a pumpkin. I HATE the facial mooning!
 
I'm not sure about osteoperosis, but I would sure hope not at my age! I already think I'm getting signs of arthritis/ carpal tunnel in my wrists. They also make crunching and grinding noises when I move them sometimes, almost as if tendons are rolling over bones. Might be too much gaming online, but I do know it's feling worse since being on pred!
 
Another night of freezing prednisone sweats. I can't stand this!!! I wake up every night, several times a night, completely drenched in sweat and so cold! Last night, I had to get a new pillow (mine was soaked, so was the back of my neck and my hair!), I had to put a towel down on my spot on the bed, there was literally a damp spot the size of my back. I'm down to 30mg today, I will kill the next doctor who ever suggests that I take prednisone again. :voodoo:

I know this one is all my own fault, but my arthritis is going insane now too. I couldn't take the kids trick or treating this year, so Tommy took them and I sat outside at the end of my driveway with one of my neighbors and passed out candy. We had a great time hanging out and I didn't do anything. However, we did sit outside until about 9:30pm. It started to get a little chilly (LOL, like low 50's, chilly for this FL girl!), and I noticed that the cold was making my knees sore. The next morning my right knee hurt so bad I could hardly walk on it, and it still hurts today.

Sorry for the book! This prednisone is making me so frustrated, I just want to dump all my pills down the garbage disposal. :angry-banghead:
 
Sorry to hear your experience with pred has been so bad SarahAnne, and its good to vent once and awhile :). I haven't really experienced the cold sweats this time around but I sure do have the crazy insomnia. Lol 50 degrees farenheit is like summer to me :p. I def feel like just giving up and throwing away all my pills away some times, but we just have to keep on truckn! lol
 
gdhillon said:
Sorry to hear your experience with pred has been so bad SarahAnne, and its good to vent once and awhile :). I haven't really experienced the cold sweats this time around but I sure do have the crazy insomnia. Lol 50 degrees farenheit is like summer to me :p. I def feel like just giving up and throwing away all my pills away some times, but we just have to keep on truckn! lol
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Have had the sweats and insomnia before - not fun but nothing yet this time around (knock on wood) although I taper from 40mg to 35 mg tomorrow
 
Oh thanks guys, it's not really as bad as all that. I should be thankful to just not be in pain right now. I'm just getting frustrated doing so much laundry!
 
I'm sorry you're having such a rough time with it. I hope those side effects ease up on you a bit soon.
 
Sorry to hear about the side affects - I'm a strange one I my night sweats were terrible before I was diagnosed (every night, I'd wake up at least once or twice just drenched), I do still get them since starting the pred but not every night... such a frustrating thing! Hopefully they will go away as I taper off?

On a non-pred related note, does anyone take iron tablets for anemia? My GI prescribed them and the pharmacist said they might cause constipation, I've had at least one very painful, slow movement every day since I started them (as well as all my "normal" D haha). I do take them with food and wonder if things will calm down as I get used to them? The pain is really intense so I feel like I'm going backwards in my recovery..
 
Oh gosh, that's no fun. I know a lot of people can't tolerate taking iron by mouth (although I thought usually because it causes nausea) so it might be worth talking to your doc about alternatives.
 
Thanks Diesanduhr, I admit I didn't take the iron tablets yesterday and I didn't have any pain! I've scheduled an appointment with Doc. Also trying to include iron-rich foods in my diet. Funny when for so many people Pred is the troublesome drug, I've had good progress with the Pred so far and don't want to ruin it! I'm on 25mg at the moment so 5 weeks to go...
 
Are we talking about the liquid iron or pills? The only side affect ive had from iron would be the opposite of the D like lizzy mentioned lol. I thought b12 is what is used to treat anemia?
 
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Hi there. I started 30mg on Aug 10. Started tapering on Oct 6 now am at 12.5 mg. My symptoms have been crazy. While on 30mgs I had massive insomnia, leg cramps, lots of chattiness, talked a lot, jitters, heart palpitations, sweats. Since tapering my symptoms are now nauseau, horrible nightmares and leg cramps. Massive charlie horses. I also have dizziness. The insomnia is now gone and I'm mostly dizzy and tired. The pred however has helped my stomach pain incredibly. Feel better soon :)
 
blessedwithfour said:
Hi there. I started 30mg on Aug 10. Started tapering on Oct 6 now am at 12.5 mg. My symptoms have been crazy. While on 30mgs I had massive insomnia, leg cramps, lots of chattiness, talked a lot, jitters, heart palpitations, sweats. Since tapering my symptoms are now nauseau, horrible nightmares and leg cramps. Massive charlie horses. I also have dizziness. The insomnia is now gone and I'm mostly dizzy and tired. The pred however has helped my stomach pain incredibly. Feel better soon :)
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And thats what counts lol, I wish it didn't come with so many side effects!:angry-banghead:
 
Midway through the 30mg taper week. Feeling better, managed to get a short run in this afternoon 2.5 km in 20 min.
 
hawkeye said:
Midway through the 30mg taper week. Feeling better, managed to get a short run in this afternoon 2.5 km in 20 min.
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That is so great! I can only imagine how much running again will help!!! Hope it continues to go well!
 
I recently bumped back up to 15 mg where I will stay until I return from my vacation as I dont want to flare in Mexico. I have hardly any side effects at this dose and I feel good. The imuran hasnt quite kicked in yet. I am giving it till March before I let my doctor put me on Humira. Even then I might try pentasa to control any breakthrough inflammation in stead of the humira.
 
5 weeks now on 40 mg and suddenly I feel super-human...like I could lift the house with one hand and vacuum under it with the other while running in circles...this is so insane! Now I see what the doctor said 5 weeks ago that I would feel better and have tons of energy...holy cow! I guess this means the prednisone is working....finally!!! The good news is that my Humira is on it's way so fingers crossed I can get that going and get off the prednisone...not sure how long I can go 90 miies an hour with my hair on fire!!!
 
Lydia said:
I recently bumped back up to 15 mg where I will stay until I return from my vacation as I dont want to flare in Mexico. I have hardly any side effects at this dose and I feel good. The imuran hasnt quite kicked in yet. I am giving it till March before I let my doctor put me on Humira. Even then I might try pentasa to control any breakthrough inflammation in stead of the humira.
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I don't know about you but imuran tappd me out, made me nautious and tired all the time....i couldnt stay up past 10, needless to say im off that now. But just a warning make sure you do your blood tests weekly!
 
suschex said:
5 weeks now on 40 mg and suddenly I feel super-human...like I could lift the house with one hand and vacuum under it with the other while running in circles...this is so insane! Now I see what the doctor said 5 weeks ago that I would feel better and have tons of energy...holy cow! I guess this means the prednisone is working....finally!!! The good news is that my Humira is on it's way so fingers crossed I can get that going and get off the prednisone...not sure how long I can go 90 miies an hour with my hair on fire!!!
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Lol thats awesome! Glad youre getting better!
 
I'm down to 20 mg a day now, I'm so ready to be off for good! I am getting chipmunk cheeks, and if I'm not careful, when looking down I have a double chin.

My mom and husband have both told me how good I look....I guess they are so used to seeing me emaciated that all the extra weight on the face looks okay to them. I personally hate it, and I remember how long it took to lose it last time.
 
gdhillon said:
I don't know about you but imuran tappd me out, made me nautious and tired all the time....i couldnt stay up past 10, needless to say im off that now. But just a warning make sure you do your blood tests weekly!
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I dont find the imuran has given me any side effects. It doesnt bother my stomach at all. I get the occasional headache. Sometimes I get tired. My blood work is always good, except the white blood cell count. My WBC is always slightly elevated, but that can be from prednisone.
 

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