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03-28-2013, 02:38 PM   #31
Josephine
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Got sweating thing down fine art alright without Prednisone, on for next 8 weeks minus 1 and an half already.
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03-28-2013, 03:42 PM   #32
Josephine
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Anyone mainly women having problem with they breasts? pain or swelling?
03-28-2013, 08:11 PM   #33
SarahBear
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Anyone mainly women having problem with they breasts? pain or swelling?
I personally haven't. Are you certain it's being caused by Prednisone?
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03-29-2013, 03:04 AM   #34
Josephine
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No not sure at moment.
03-29-2013, 04:09 AM   #35
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Sharing my Pred story.

I've been on it a few times. First time was when I was 9. I was in 5th grade and was made fun of by other kids because I had a fat face but the rest of me wasn't. They called me fat anyway and would puff up their own cheeks and make faces at me.

Second time I took it was when I was around 14-15 and it made me retain so much water I had stretchmarks on my legs, breasts and armpits. I was horrified by how my body looked. Of course the mood face came with it as well. Love it when people stare at you in high school and giggle and smirk.

I took it a third time before my surgery when I was 16. Same old moon face. Had people point and laugh in my face and call me "fucking ugly." Really boosted my self esteem so I tried to kill myself and was committed to a psych hospital. Finally had surgery and went into remission.

Took it a 4th time for something non Crohn's related when I was in grad school. At that time I was on beta blockers for my irregular heart beat. The Prednisone made my heart even worse and I could not function. My cardiologist told me to stop taking it (was only taking it for 3 days). I felt so much better after being off it.

Now I only take Entocort if I need steroids. I'll only take Prednisone again if its a life threatening situation as I cannot deal with it messing up my heart again.

These stories aren't meant to scare people from taking a medication that could potentially save your life. Everyone has a love/hate relationship with Prednisone.
That is awful! I've had to put up with a lot of attention about my weight because I was so skinny before. My nickname in work for a while was 'chubbs' then eventually I think they sensed it wasn't funny anymore and stopped after the millionth time! I can't imagine having to go through it during high school, that must just be awful!

I have horrendous heart palpitations on pred, so distracting I can't function for hours. I saw my GP about it and she looked at me like I was nuts for even worrying about it!
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03-29-2013, 04:07 PM   #36
Jennifer
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Anyone mainly women having problem with they breasts? pain or swelling?
Yes. I have stretchmarks or my breasts from high doses of Prednisone. Not huge/noticeable ones but small ones. Got them when I got stretchmarks everywhere else (inside of knees, calves, inner and outer thighs, and armpits). The swelling alone can cause pain.
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03-29-2013, 04:35 PM   #37
Josephine
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Yes. I have stretchmarks or my breasts from high doses of Prednisone. Not huge/noticeable ones but small ones. Got them when I got stretchmarks everywhere else (inside of knees, calves, inner and outer thighs, and armpits). The swelling alone can cause pain.
One side seem fuller and rounding then other, only be taking pred just under 2 weeks. i had slightly pain and previously before. So I am not sure if something do with slightly curve in my back.

Thank you relpy.

Last edited by Josephine; 03-29-2013 at 04:53 PM.
03-30-2013, 03:36 AM   #38
Josephine
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Acne starting on my back and face, next will the hair growth.
03-31-2013, 03:44 AM   #39
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I'm on a round of it right now and I feel like I'm going to have a heart attack. My heart has been racing, I have pain in my chest and I have no desire to eat. Yes, prednisone has a very different effect on me than most. I have no desire to eat. Of course, isn't eating what got me here in the first place??? That's a whole other set of aggravations.
I had no appetite either, and lost weight while on prednisone. It does happen!

Jennifer: I'm sorry to hear you've had such awful experiences.

These stories aren't meant to scare people from taking a medication that could potentially save your life. Everyone has a love/hate relationship with Prednisone.
I think it's vital people talk about the negative experiences as well as the positive ones. A "love/hate relationship" seems to sum up this med. very well.
03-31-2013, 06:51 AM   #40
Artisan105
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I dislike Prednisone. We are no longer friends.
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04-01-2013, 11:43 AM   #41
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I'm glad I found this club. Pred. sucks! I actually lost weight while on it. It made my stomach better, but made me so jittery I couldn't eat and I couldn't hold a conversation and cried all the time. If anyone talked too loud it sent me over the edge. My family thought I was crazy. Forget sleeping. I thought I was having a heart attack. Couldn't concentrate to pay bills or get my kids to places on time. It made my fingers numb. 40mg gave me headaches, my eyes hurt. Every time I saw my doctor, I had a long list. I tell people it's like having a 100 cups of coffee a day.

My current med is failing and I'm afraid to go back to the doctors and go back on Pred. Does it get better? Why do some people have such a bad reaction and others think they're superhuman? Is Entocort(sp?) better? Cheryl
04-01-2013, 11:56 AM   #42
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My current med is failing and I'm afraid to go back to the doctors and go back on Pred. Does it get better? Why do some people have such a bad reaction and others think they're superhuman? Is Entocort(sp?) better? Cheryl
I don't think there's anyway of knowing if side effects will get better. I've read some people say their side effects improved the longer they were on it, but for me it got worse as it went along.
04-01-2013, 11:58 AM   #43
SarahBear
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My current med is failing and I'm afraid to go back to the doctors and go back on Pred. Does it get better? Why do some people have such a bad reaction and others think they're superhuman? Is Entocort(sp?) better? Cheryl
Side effects should decrease both as you taper and as your body gets more used to the medication. Entocort is better as far as side effects are concerned - it affects the digestive tract rather than the whole body, as Prednisone does. So it usually is easier to handle. However, it's my understanding that Pred is more effective.
04-01-2013, 12:41 PM   #44
Jennifer
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Entocort is meant to treat the ileum and ascending colon. If you're affected further down than the ascending colon, then Entocort will not work for you.

Also, I have yet to do research on this myself but I've heard from people I respect that Prednisone does more harm than good for people with Crohn's yet works very well for people with Colitis. Like I said, I have to do some research on it.

Its nice that Prednisone has so many uses such as releasing throughout the whole body helping with joint pain and other health problems. All medication is trial and error though. Prednisone may work for many but not for everyone. For me since my Crohn's has been located in the ileum then I take Entocort instead if steroids are needed.
04-01-2013, 05:43 PM   #45
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I'm off to the docs tomorrow to demand to come off pred and onto something else! Don't think it will go down too well but I have had enough! Did any of you guys find the more you used pred the less effective it became? I seem to have had little to no benefit from my latest taper, just all the side effects. I'm back to having near continuous pain
04-01-2013, 07:23 PM   #46
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Usually when you taper you are on another medication, so if symptoms return the primary or main medication they are trying to put you on may not be working. When I went on HUmira again I took Prednisone through the loading phase, and currently tappering for what seems like 12th time in 3 years. I have been told if you taper to quickly you can have issues also, I am guessing this varies with individuals as I have yet to have a issue going 40,30,20,10 done. Yet others talk about have to take as small as 1mg dose's for awhile and still struggling to get off.
04-01-2013, 08:14 PM   #47
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Usually when you taper you are on another medication, so if symptoms return the primary or main medication they are trying to put you on may not be working. When I went on HUmira again I took Prednisone through the loading phase, and currently tappering for what seems like 12th time in 3 years. I have been told if you taper to quickly you can have issues also, I am guessing this varies with individuals as I have yet to have a issue going 40,30,20,10 done. Yet others talk about have to take as small as 1mg dose's for awhile and still struggling to get off.
With regards to this, I'm currently on 2mg a day, been tapered off 1mg a week, horrendous trying to get off.
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04-02-2013, 03:26 AM   #48
lsgs
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Usually when you taper you are on another medication, so if symptoms return the primary or main medication they are trying to put you on may not be working. When I went on HUmira again I took Prednisone through the loading phase, and currently tappering for what seems like 12th time in 3 years. I have been told if you taper to quickly you can have issues also, I am guessing this varies with individuals as I have yet to have a issue going 40,30,20,10 done. Yet others talk about have to take as small as 1mg dose's for awhile and still struggling to get off.
The problem is it's my rheumatologist who is treating me and he openly admits he likes to sit on the fence and my treatment is mostly guesswork because they haven't got it on a scan yet, only in bloods and stool tests. He said I would have to 'nag' him to get on anything else, which is exactly what I'm going to do today. I'm quite scared of going on aza because of the initial nausea/flu like symptoms but the weight gain/hairiness/tremor/palpitations with pred is a joke too.

With regards to this, I'm currently on 2mg a day, been tapered off 1mg a week, horrendous trying to get off.
The lowest I've managed to get to was 7mg Does it get worse as you get closer to 0?
04-02-2013, 05:17 AM   #49
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I was reluctant to go on Aza at first but I'm so glad I did, I still had blood in stool even on like 5 months of pred, Aza took it away almost immediately after starting (and I know it's supposed to take 3 months to work) but it couldn't just be an coincidence. I'm hoping my taper will be good, iv been on pred since October, I go to 7.5 tomorrow, then 5s two weeks later then 2.5 then off
04-02-2013, 05:45 AM   #50
lsgs
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I was reluctant to go on Aza at first but I'm so glad I did, I still had blood in stool even on like 5 months of pred, Aza took it away almost immediately after starting (and I know it's supposed to take 3 months to work) but it couldn't just be an coincidence. I'm hoping my taper will be good, iv been on pred since October, I go to 7.5 tomorrow, then 5s two weeks later then 2.5 then off
Good to hear! I know you've struggled a bit with nausea and fatigue, how bad was it? I don't deal particularly well with nausea and I'm worried I'm going to be off work, my job means I have to be functioning well to perform.
04-02-2013, 06:54 AM   #51
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I've been on pred for 4 weeks so far. Started 40mg, then went down to 30mg and now on 20mg. Starting to get the pains again. Just niggles here and there, but that feeling like it's about start all over again NOOOOOO...So the pred has definitely helped me so far.

Side effects...definitely noticing I am more aggressive and I get bursts of energy where I feel like I could punch something or lift something heavy lol... my fiance has suggested a boxing bag haha...and I find it extremely hard to get to sleep. Usually takes a good 4 - 5 hours to fall asleep...argghhh...BUT i would rather all this than the Crohn's symtoms. Unfortunately though...I think they're coming back
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04-03-2013, 12:07 AM   #52
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Finished this latest course of Pred, it will take a few weeks to leave my system but I'm off them as of today! So far Humira seems to be helping a lot but time will tell once the steroids wear off whether it can keep my symptoms from returning.

I saw my endocrinologist today, I don't have to go on medication to improve my bone density since I'm now off the Pred, which is great (I didn't want to go on another medication with yet more side effects). I can stick to vitamin D supplements, calcium from my diet and weight-bearing exercise. But if I have to go back on Pred then I'll need this other medication as well. All the more reason to say goodbye to Pred long term!! Fingers and toes crossed!! x
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04-03-2013, 12:50 AM   #53
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Usually takes a good 4 - 5 hours to fall asleep...argghhh...
Just wondering if you've been taking Prednisone in the morning or not. Many have mentioned that taking it in the morning can help with the insomnia side effect. If you've already doing this, I'm sorry. *HUGS*
04-03-2013, 01:24 AM   #54
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Hey Jennifer, yeah I take it first thing in the morning when I wake up and have breakfast Usually by 1.30pm onwards i have burst on energy until about 6pm and then after that just awake. Hopefully will get better
04-03-2013, 05:36 AM   #55
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Hey Jennifer, yeah I take it first thing in the morning when I wake up and have breakfast Usually by 1.30pm onwards i have burst on energy until about 6pm and then after that just awake. Hopefully will get better
I also found it didn't help to take it early in the morning. I ended up taking a sleeping aid instead, which worked.
04-03-2013, 06:10 AM   #56
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Good to hear! I know you've struggled a bit with nausea and fatigue, how bad was it? I don't deal particularly well with nausea and I'm worried I'm going to be off work, my job means I have to be functioning well to perform.
It was bad enough to not be able to function but not bad enough that I ever once came close to vomiting. You can get anti nausea tablets until it subsides
04-03-2013, 09:57 AM   #57
Josephine
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Being 35 mg instead monday, feeling lot better, more energy, sleep better and went GP today. Got acne cream and appointment in week and half for exam of chest.
04-03-2013, 09:58 AM   #58
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Just wondering if you've been taking Prednisone in the morning or not. Many have mentioned that taking it in the morning can help with the insomnia side effect. If you've already doing this, I'm sorry. *HUGS*
Do most people take it once a day? I remember being instructed to take it twice daily, morning and night.
04-03-2013, 02:24 PM   #59
Josephine
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Do most people take it once a day? I remember being instructed to take it twice daily, morning and night.
Yep once day in the morning with everything else.
04-03-2013, 05:37 PM   #60
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yeah just once a day for me, I've been taking a herbal sleeping tablet lately. Sort of been helping!!
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