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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisone is awful and I'll never take it


10-08-2010, 04:02 PM   #1
countrycoffeehouse
 
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Prednisone is awful and I'll never take it

Hey,
So I am kinda new but I notice that the majority of the posters are on Prednisone or have been in the past. And it seems like its a regular drug for them to go on and off ( some americans too). I HATE that drug and after going on it once at the beginning of treatment at 40mg/day for 7 weeks then weaning off to try it again a year or so later and feel worse for having taken it. It seems to cause the disease to come back worse each time I take it. I will never unless I am in ICU take it again. Doctors don't even ask me. How can you guys manage on this stuff?
Right now I am in a huge flare with no meds at all and will not be able to have any for at least 3 months or so ( husbands job thing) but They started with the ASA drugs-while on that Prednisone - nothing did not work, Then to Immuran after 4 months ( time for it to kick in)- nothing, then onto Remicade- worked great for 6 months but then caused me to stop breathing during one of the infusions, next step Humira- never shut the disease down still had the runs and pain just less of it, Cimza- only did the start up of it before insurance quit and now I am on nothing-sick but that is the normal life for me other then the 6 months of remicade remission and this is over almost 5 years.. YUCK at this point I am doubtful that there is any medicine that I will take that will work! whats left?
10-08-2010, 04:20 PM   #2
vonfunk
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How do I manage on the stuff?
I have to, without prednisone I go into a flare up within 3 days and my colon starts bleeding, and I eventually need a blood transfusion.
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10-08-2010, 04:28 PM   #3
countrycoffeehouse
 
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wow that would be awful and I understand. I too have a GI bleed and I get Iron IV infusions about 2 a month and a full blood change about every 8 weeks or so. I live in constant flare though and the side effect of the Prednisone is worse- I still feel awful and then crazy and look weird to boot. Plus the night sweats and severe body aches..
10-08-2010, 04:46 PM   #4
Rebecca85
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Sounds like you have a more severe than normal reaction to it! I got very emotional and upset easily, but no physical problems although I was on a low dose. But that was far better than the pain I was going through. Forgive me if you said in a previous post, but where is your disease? Would Entocort be suitable for you or have you tried it?
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10-08-2010, 08:54 PM   #5
Lucy
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I've never been on it and refused it from the beginning. I guess never say never, but it would be a last resort for me.
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DX: Crohn's in the terminal ileum 1997/2010 in colon
Meds: Humira 40 mg injection weekly
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10-09-2010, 09:23 PM   #6
Missy_anne
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Didn't really have a choice. I would rather put up with the nasty side effects for a temporary amount of time then be running to the bathroom every 10 minutes :/

If I could manage without it-I wouldn't choose it! I guess we (?) just have to weigh the good and bad.
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Last edited by Missy_anne; 10-09-2010 at 09:33 PM.
10-09-2010, 09:31 PM   #7
scifi-enthusiast
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I have a lot of problems with the prednisone. Most notably the acne. I've been using Proactive for the last 2 months and my acne just seems to get worse and worse.
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Diagnosis: March 2008 (7 days after resection)
Surgery: 1 emergency blind resection because of hemorrhage & massive blood loss (March 2008), Reconnection of Colon (June 2008), Removal of billiard ball size abscess (Dec. 2010)
Meds: Lialda-2.4gm (every other day), Imuran-0mg, Pred-0mg, Calcium+d, Humira-40mg, Sulfasalazine-500mg
Previous Meds: Pentasa (didn't work)
Currently on SSD & SSI
10-09-2010, 11:41 PM   #8
vonfunk
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I've been on it for almost 2 years straight, it's gotten to the point where the side effects to me are minimal, except when it's raised beyond 20mg. Then I get depressed or sad at the drop of a hat. The first 6 months were brutal though, I managed to get all of the side effects except the "mania" and weight gain. It was strange, I had lost 60 pounds during my first flare up but my face was twice the size.
10-10-2010, 02:55 AM   #9
Guest555
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As awful as pred is, including the taste, I think it's the only thing I take that's effective.
10-10-2010, 08:25 AM   #10
NicoleKS
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Well... I've been on it for a few months now and it did nothing at all for my Crohn's. I really haven't had a lot of terrible side effects from it... I do have acne on my chest and back and I did gain about 10 pounds and now I have a chubbier face. It really doesn't bother me but yeah I can't wait to get off it. If it helps with the Crohn's, hoorah. If not, yeah don't bother taking it. I'll never take it again since it didn't work for me.

And...
Before I took Pred I had the "I've heard bad stuff about it and I'll never take it" attitude. But, when you're sick as a dog and there is a chance it'll make you feel better......
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Symptoms of Crohn's: 17 years
Officially Diagnosed: July 8 2010 with Crohn's of the ileum.
Current IBD meds: 12.5mg Methotrexate weekly, Lomotil, Baclofen and Roxicodone as needed.
Failed IBD meds: Asacol, Entocort, Prednisone, 6MP, Humira, Remicade, Azathioprine, Librax.

Symptoms are still uncontrolled.
Fistula developed January 2011.
Resection on February 3rd, 2011.

My poor gut and my poor butt!


Last edited by NicoleKS; 10-10-2010 at 08:29 AM.
10-10-2010, 01:41 PM   #11
2thFairy
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And...
Before I took Pred I had the "I've heard bad stuff about it and I'll never take it" attitude. But, when you're sick as a dog and there is a chance it'll make you feel better......
Yep. Same here.. I avoided going to the doctor for three months with a flare because I knew prednisone was next. When I couldn't move because of pain, I didn't care anymore and was ready to take it. I'd like to think I won't be that stupid again.
10-10-2010, 02:40 PM   #12
Astra
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I was on it for nearly 6 months, and it saved my life, now back on it at 15mg now, I have had all the 'textbook' side effects, but it doesn't bother me.
I've never had mood swings or psycho stuff.
I've never had acne, but have a bit of the chipmunk look!
I have no pain or D, lots of energy and I love the wizzy feelings it gives me!
Now the Entocort, that was horrendous! I was in a permanent foggy haze! I hated it! I made so many mistakes at work, I was dangerous!
Funny how we react differently to meds?
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Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
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10-10-2010, 02:51 PM   #13
vonfunk
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I had no issue with taking it really. The summer just before I was diagnosed I had been combating bronchitis and pneumonia so I had already been on it off and one for about 3 months. I was used to most of the side effects.
The pneumonia is why I quit smoking and that was the trigger that caused he UC to rear it's head, and put me back on pred.
10-10-2010, 03:04 PM   #14
2thFairy
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Vonfunk, like you, my UC showed up after I stopped smoking.

I have no desire to start smoking again, but it frustrates the heck out of me when I consider that I was "healthier" when I was smoking. To trade smoking and being functional for having ulcerative colitis and a whole new myriad of physical ailments is so insane!!

I've read that it is the carbon dioxide that curbs the UC, not the nicotine. Maybe they can package that in pill form and fix us? Hahaha!!
10-10-2010, 04:11 PM   #15
Chuck2008
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I love prednisone, I don't even know I'm taking 6mg/day until I try to taper, then the symptoms come back. I've been on prednisone for 2 years now non-stop.

Just wanted to give some support to prednisone! It gets a really bad rap on the message boards, but it really is a wonder drug.
10-10-2010, 04:38 PM   #16
vonfunk
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I've read that it is the carbon dioxide that curbs the UC, not the nicotine. Maybe they can package that in pill form and fix us? Hahaha!!
From what I have read (apparently a doctor can't prescribe cigarettes, I was trying to make a case), the theory is it's the hydrogen cyanide in the smoke mixing with the hydrogen sulphate, apparently UC suffers have a higher amount in the colon, to transform it into something else. However it will never be studied due to the Hippocratic oath.
10-10-2010, 04:55 PM   #17
2thFairy
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OOoooo.. I'm going to look into that. Interesting..
10-10-2010, 08:38 PM   #18
Pamywyner
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Just remember that smoking causes blood clots and studies have shown that Crohn's does too! A CAT scan just found a clot near my liver and they kept asking me over and over if I was a smoker or do I live with a heavy smoker?

I was diagnosed with Crohn's a week later and blood tests also showed that I have blood disorder that causes me to clot too easily.

I have smoked in the past and I don't think I'll ever light up again!! Please be careful if you choose to smoke!
10-10-2010, 10:07 PM   #19
vonfunk
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No one said smoking was good for your health, at this point of time everyone knows the risks. Smoking is bad for Crohn's but good for Ulcerative Colitis which is the only disease that can be helped by smoking. It's a trade off picking which cancer you want in the long run.

And the incidence of flaring when you decide to quit is very high. A double edged sword really. and I am familiar with blood clots, I was hospitalised back in June for a week, went through 3 months of giving my self heparin injections.

In the long run the benefits a person with UC will receive are out weighed by the long term dangers of smoking. but they are the accepted risks when one treats UC with tobacco.
10-10-2010, 11:13 PM   #20
countrycoffeehouse
 
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My Disease is from the bottom of my stomach throughout the small and then onto the large. the most widespread they have ever seen it in some one so young in the crohns zone ( not quite 5 years). I hate to say it but I have been and am very sick right now. I am rushing to the bathroom about every hour or or sooner.. actually fell asleep there last night because I took my pillow with me. Its bad and I know its bad when my GI calls me to check on me and hates the sound of my voice so he comes to my house. I live in a huge city and its a large practice and I am the first patient he has ever made a house call for. ( no insurance is why and he knew I would not come in) He looked at me with tears in his eyes and said he was so sorry it was so out of control. ( HE is not a mushy guy.. i'm just that sick) so I know I am beyond sick enough to warrent the pred but I will not take it. I feel crazy and at least with the pain etc I know I am normal in my head. Doc understands and feels awful because Cimza is $$$ and not an option to those without insurance.. and the very $$ drugs are my only option. He knows the anemia is creeping up again and said NOT to play around with that and go to the ER ( call him on my way and he will meet me there) and I will get the transfusion.. can't pay for it.. but without it I will die..no choice. I just pray that the company takes my husband out of the Temp to hire pool and offers him a company position with insurance Like I said ICU will be the only place for pred for me. and yes I did enocort and it didn't work.. but didn't make me crazy
10-11-2010, 05:02 AM   #21
Lucy
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Country, I will say a prayer that your husband goes full time and gets you the insurance you need. So sorry your so sick, and kuddos to your GI for making a house call he sounds like a wonderful caring doctor. Wish we had more like him. Hugs coming your way.
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