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08-05-2011, 01:32 PM   #1
chrisnsteph1022
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Why take pred?

I realize it works quickly. But I keep seeing people talk about the HORRIBLE side effects (which I've also experienced). After going through that 8 years ago, I swore I'd never take pred again. When I flared up severely in January, my GI of course suggested pred. I reminded him that I refuse to take that and told him I'd deal with the Crohn's symptoms before dealing with the pred side effects. It took longer to get my flare under control, but it was better than what I went through with pred. Anyone else feel that way?
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Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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08-05-2011, 01:37 PM   #2
scottmyster
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Hi Stephanie, i hate preds and it's side effects but, when comes down to other meds that i have read upon i rather the preds. There are too many side effects to the other drugs. but all others are not the same. When it comes down to it. It's of personal choice. best wishes

scott
08-05-2011, 01:44 PM   #3
chrisnsteph1022
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Scott, question just for you since I know you're bipolar, too-do you find the mood swings tolerable with the bipolar?? I was not bipolar last time I took pred, and I remember horrible mood swings. Now, I'm terrified that taking pred would trigger the bipolar and make me psychotic.
08-05-2011, 01:58 PM   #4
scottmyster
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yea i am bipolar. and yes i get a little out of control especially in the manic stage i just can't still long enoungh to get rest. but i am on abilify and that keeps my mood in check. i am doing good on preds now. i rather put up with the manic stage and stand the pain in my stomach. hopefully it won't last much to longer. i am more tests done over the next two weeks. hopefully things will swing my way for a while and put me back in remission.Best wishes

scott
08-05-2011, 02:31 PM   #5
Carrie630
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Oh gosh, you're both bipolar? My doctors are being so difficult about the number of pills I take, not that I blame them, but wtf am I supposed to do? I take lamictal, wellbutrin, and lexapro for the bipolar which leaves me taking nothing but plaquenil for the fibro (let's just say, you don't get plaquenil for fibro so she isn't fully dx'ing me), then I have an endocrinologist putting me on metformin and actos for metabolic syndrome. I'm afraid to try to take anything new, and I haven't the slightest idea how I could switch to something maybe with less pills. the rheumatologist won't give me abilify or anything else unless I can get off the other three. it's a mess.
08-05-2011, 02:36 PM   #6
Jessica
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I take pred when I have to because I just found out it works.

It might've taken 3 yrs, but I found myself in remission after my last round of pred to stop an onslot of issues I was having thanks to the mistake of taking a Fish Oil and Flax Seed Oil pill supplement.

However, I'm doing good now. Much better than ever since diagnosis. And I had just finished TB testing for a biologic. lol...

As rediculous as it sounds, keep doing what you're doing. Somehow, it will become worth it.

<3
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Dx w/ Crohn's Disease May '08
Dx w/ Graves' Disease June '11
Dx w/ Lymphocytic Colitis October '12
08-05-2011, 02:44 PM   #7
tiloah
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I realize it works quickly. But I keep seeing people talk about the HORRIBLE side effects (which I've also experienced). After going through that 8 years ago, I swore I'd never take pred again. When I flared up severely in January, my GI of course suggested pred. I reminded him that I refuse to take that and told him I'd deal with the Crohn's symptoms before dealing with the pred side effects. It took longer to get my flare under control, but it was better than what I went through with pred. Anyone else feel that way?
I felt that way and my doc gave me antibiotics instead. I ended up with C. diff and then my Crohn's got so out of control that I developed an abscess. High doses of Prednisone and antibiotics couldn't heal the abscess so I had to have surgery. I have to wonder if I hadn't been so damn stubborn about the Pred if I could have avoided that.

Pred and I have a love/hate relationship but I'm afraid I have to admit nothing is better at getting an acute flare under control.
08-05-2011, 03:26 PM   #8
ThanksP
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I hate Prednisone but I want to keep my insides, inside as long as I can.
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08-05-2011, 03:32 PM   #9
Jennifer
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I realize it works quickly.
That's the only reason why. Best to get it taken care of immediately then allow things to get worse. I'd rather take Pred than die which I would have.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
08-05-2011, 03:34 PM   #10
Crohn'sFor Life
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I bleed heavily when I have a flare up. Prednisone helps to slow down the bleeding and keep me out of the hospital.
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Diagnosed July 2, 2009 Crohn's Colitis

Colon removed September 26, 2011.
Pathology showed UC instead of Crohn's.

I have arthritis that is very similar to RA, but not RA because I had UC.

Autoimmune related itch.

Meds: 15 mg/week Methotrexate for RA
Cetirizine for the itch
08-06-2011, 03:24 AM   #11
lola99
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I don't know what i'll do if i ever have to take it agian. I started developing cushing syndrome after only 2 months or so of use. I was only taking it at 20mg for one month then started to wean. I flared so i went back up to 20 mg for another month. Then i weaned completely off but by then i had moon face,darkened body hair,buffalo neck. It did make me feel great for the first month. I was running around like a chicken with my head cut off.
08-06-2011, 06:36 AM   #12
scottmyster
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HI carrie, i am bipolar and i do take lamcital and abilify. but, no other depression drugs.
08-06-2011, 06:39 AM   #13
Crohn'sFor Life
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I too suffer from prednisone induced Cushing's disease...and nearly all the side effects one can get from prednisone.
08-06-2011, 01:29 PM   #14
Lydia
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I hate pred but I hate surgery even more. I can not let my disease get that out of control again. I make sure to have some things to deal with the side effects, like ativan. So its pred until the imuran kicks in. I get some really bad anxiety and jitters, esp when tapering.
08-08-2011, 07:36 AM   #15
mike316atl
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During my first flare, I had severe inflammation and ulcerations in my TI. This was June 7th. I was on prednisone from then until 2 weeks ago. This past colonoscopy was clean (last Thursday). It worked for me, but I also experenced bad side effects. (mostly insomnia) I guess I'm going to start Humira after my upcoming MRI.
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08-30-2011, 06:07 AM   #16
Paul Cronk
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Crohn's diagnosed 11/2010 and controlled by Pentasa up to now, but I do take recourse to Med MJ also.

I am finding it very difficult to induce remission with Pentasa alone. My GI said double the dose from 2g to 4g but no remission and now I am starting to have Rheumatological issues.
The next step is Pred but I am scared of the side effects.

Do short bursts of Pred help to induce remission or do most people think I am better accepting the symptoms if I can "gut it out" with Pentasa and MJ? I know we are all different but give me some thoughts, people, please.

Last edited by Paul Cronk; 08-30-2011 at 06:10 AM. Reason: Correction
08-30-2011, 09:44 AM   #17
marsham
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Am on prednisone now for a flare up. 40 mg to start and have been on them for about 10 days now. Has made a big improvement in how I feel. Do I want to be on them NO!! But I was sick enough I would have done anything. It has been awhile since I have needed prednisone. Tried Entocort never again!!! I didn't sleep for 7 days, kept getting woken up with leg cramps from Hell!! But I have no one to blame but myself. I had been on Imuran 100 mg for about 6 years and in remission for the most part. A friend died from liver cancer that might have been caused from his colitis drugs. It freaked me out and I wanted to try life without drugs. Way stupid!! So now trying Apriso but since Im in a flare now I may have to go back on Imuran. Scares me with all the drug side effects but what can you do? I was hoping the prednisone would give me some extra energy but so far no. Has made me feel so much better. See doctor this week so will have to decide what to do next. Drugs cant live with them and cant seem to live without them!
Best wishes to all
M
10-06-2011, 04:08 AM   #18
Paul Cronk
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Hi,

I had to take Prednisone for the first time because of a flare up which was not responding to pentasa double dose. The symptomes were both in the intestine and in the back and eventually I had to take something. My doctors are cautious about stronger drugs and two weeks Pred made me feel a lot better. Once I stopped taking the Preds after two weeks I felt better still and am exoeriencing for the first time something like real remission. This may also be because I was on a pre-colonoscopy diet which I have relaxed only very slowly, and for the time being I am still not on bread have eliminated peels, pips, stronger meats and unnecessary carbohydrate, so that there is less work for the guts.

So far a big sucess so wish me luck as I think that occasional Preds are the way forward for me.
10-06-2011, 08:29 AM   #19
Wizbit
 
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I hate Prednisone but I want to keep my insides, inside as long as I can.
What good are your insides if pred has destroyed the bones that they cling to and the skin that wraps around them?
10-06-2011, 08:40 AM   #20
Crohn's 35
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Prednisone is ok in short term intervals...Long term or alot of usage is bad. I know of someone with diabetes from it and another with osteopenia. Yeah it helps but long term after 20 years of it off and on.. even walking and thinning of skin is a draw back.

It maybe the wonder drug and it can save lives but it also can cause so much more, long term. Most docs dont realize when you are on Pred and having tests , it is a waste of time, I am living proof of that.

I guess you have to see the big picture long term...trust me you can go from 30ish to 50ish in a flash time does fly!
10-06-2011, 10:29 AM   #21
Paul Cronk
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Thanks for that, I have to be aware of the unavoidable side effects of long term Prednisone use. However, we are talking about maybe a one to two week course of preds only when there is a flare - maybe once every three months max and probably much less. Also I am starting at age 58, so I have less time to go on these. I am trying to be positive about the Preds because frankly they are not going to give me Remicade or immunosuppressant drugs as I have no evident damage to my gastro tract - just the "attack" symptoms when they come.

However, the caution advised by those of you who have had to take these longer term is very valuable advice and I thank you for it. I think I tolerate the Preds well for the limited time I have had to take them and it seems OK for now but obviously I would review this with my doctors if it started to be too frequent!
10-08-2011, 02:34 AM   #22
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What good are your insides if pred has destroyed the bones that they cling to and the skin that wraps around them?
When I'm on Pred Ii take Alpha D3 which is a very concentrated dose of Calcium to stop Osteoporosis.

Pred is bad but it is far better than a month in hospital on drips, I have learned to put up with them, it really is better than bleeding and getting weaker every day.

The worst drug I have ever had in y life is that Sulfasaline, dunno if that's spelt right. That stuff makes my nose like a dogs nose I can smell sewers even in hospital, I constantly heave for no reason at all, cant even clean my teath without heaving and choking, can't even put a tablet in my mouth either, I think your tongue must swell up with it, not sure but boy I will never put up with that stuff again.
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No Colon = No drugs but loads of other stuff now though.
10-09-2011, 01:38 PM   #23
cosmic dave
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I felt that way and my doc gave me antibiotics instead. I ended up with C. diff and then my Crohn's got so out of control that I developed an abscess. High doses of Prednisone and antibiotics couldn't heal the abscess so I had to have surgery. I have to wonder if I hadn't been so damn stubborn about the Pred if I could have avoided that.

Pred and I have a love/hate relationship but I'm afraid I have to admit nothing is better at getting an acute flare under control.
I get abscess when I flare up, and same as u had to have surgery to clear the last one up but it must have damaged something because I still get pain from it 5 years on ! I use aza to control things now but thats has side effects to.

cheers

David
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