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Crohn's Disease Forum » Treatment » Prednisone/Entocort » What is your worst Side effect from pred?


09-22-2014, 09:02 AM   #1
Apollo_
 
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What is your worst Side effect from pred?

Although nobody enjoys the side effects they affect each of is in different ways. I'm curious, What is the side effect you fear most?
09-22-2014, 11:31 AM   #2
FrozenGirl
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Oooh. It might be a tie between the freakish hunger ( and associated pregnant looking stomach from the bloat) and massive salt/ water retention in my ankles and calves making it painful to even stand.
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09-22-2014, 11:58 AM   #3
DJW
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Osteoporosis or eye issues were my biggest fears. Thankfully, I'm still alright all these years later.
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09-22-2014, 01:04 PM   #4
SarahD
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Pred causes me to develop hypokalemia, or low potassium. It makes me feel absolutely dreadful, my heart races, I have no energy, I can't think straight, my finger tips swell up...it can be life threatening if left untreated, and in my case we had to treat it quite aggressively to get my potassium to hold anywhere near stable. I was quite close to being admitted to hospital for IV potassium at one point, which is something the Dr's don't like to give because it's quite risky.
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
09-22-2014, 06:17 PM   #5
Apollo_
 
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Wow I didn't know that prednisone can be so dangerous. Thankfully I've never come close to these kind of serious problems. The worst I've had is some manic episodes and losing bladder control once. Currently my biggest problem is Hunger and weight gain. Plus some bad acne on my arms and back. And mood swings. FROZENGIRL, DJW, SARAHD I'm so sorry you guys went through that. You guys inspire us all! If you could get through that, we can all get through prednisone!
09-22-2014, 10:05 PM   #6
Lady Organic
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on my last 50mg pred episode 2 years ago, I went almost manic and engaged in a overload of physical/manual tasks emphasising on hand tasks. Mild arthritis in wrists and hands, started right after CD remission and pred tapering off. I'll never know what triggered this arthritis, Prednisone? overwork?, CD flare-up? Combination of these? the doctors say its not the pred, but how can one know for sure? there is no exact science with side effects. Now that I have gone into this cascading bad side effect of prednisone, I am pushing anyone with CD to try EEN liquid diets before trying prednisone to induce remission. adult GI do not offer this as treatment option, we have to ask for it and be aware of it, which is unlikely for most of us upon diagnosis.
Im still stuck with this arthritis a year and a half later and it has also occured in ankles and shoulders, but on and off for short periods, unlike wrists and hands which are chronic. However im doing much better as time goes by and hypothethise that within the next year my symptoms will come to an end.

BEWARE OF MANIC SYMPTOMS WITH PREDNISONE AND REMAIN AS CALM AS POSSIBLE EVEN IF YOU FEEL ON TOP OF THE WORLD, THAT MY ONLY ADVICE!!!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
09-25-2014, 03:04 PM   #7
UnXmas
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Of the ones I experienced, the absolute worst (I'll count it as one since they all merged together) was restlessness/boredom/insomnia. Every minute felt like several hours, I couldn't settle to anything, and there were more hours in my day because I slept so little. I couldn't get comfortable, couldn't keep still, nothing could hold my concentration. It's hard to describe, but it was awful. But when I thought I couldn't stand it any longer, my doctor prescribed me Amitriptyline, which somehow cured not just the insomnia, but also my state of mind. But I still have what almost amounts to a phobia of insomnia as a result; my sleep is sacred to me now!

And I know it's very vain but I'll be honest: facial hair growth.
09-26-2014, 06:21 AM   #8
BlackButterflies
 
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The mood swings for sure. I go from a positive super happy manic on top of the world insomniac state to completely angry and irritable. That and the acne. I fear the bone loss the most though.

Currently sitting here after only three hours of sleep again...
09-26-2014, 09:00 AM   #9
Polaris
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Insomnia, racing/pounding heart (I already deal with tachycardia as it is), and being a raging b*tch.
09-26-2014, 01:55 PM   #10
Desperatemom
 
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My daughter is currently on 80 mg a day since being out if hospital three weeks ago. She complains about being "out of it", bad acne of face and back, and bad temper and anger. She has lost so much weight I dont see round face as she has had before. She just wants to be weened off but just started Remicade. Her list of symptoms is pretty long but she says at this point she just wants to feel well.
09-26-2014, 02:18 PM   #11
worriedboy
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I understand your daughter. When not feeling well, whenyou're sick as hell, you are welcoming any med or treatment that can help and make you feel better. Hope she is back on her feet soon !
09-26-2014, 02:21 PM   #12
Desperatemom
 
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Thank you, worriedboy! She has taken on a new approach in life. She says if a med makes her feel better, she rather feel good today than worry about possible future sude effects. She feels her chances of getting run over by a bus are greater! Guess she has thrown in white flag!
09-26-2014, 06:01 PM   #13
Lady Organic
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I use to think my previous dosing of 50 mg was about the highest dosing one could get until, I heard 100mg once and 80mg here too. Whats the maximum one can get? lets say for a average size woman?
09-26-2014, 06:46 PM   #14
nikimazur
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On my sixth month of prednisone, partially due to Autoimmune Hepatitis on top of Crohn's. Started at 40mg, and have tapered to 10mg, but my liver hasn't stablized enough to get off of it completely. I've gained a total of 15lbs over the past six months. I've been dealing with more acne now than I ever did in my teen years, chipmunk cheeks, cravings, and terrible mood swings. When I was on 40mg, I felt so mentally unstable. I have severe anxiety/depression to begin with (take daily meds), but felt absolutely miserable.
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Crohn's, Traumatic Brain Injury, Autoimmune Hepatitis (May 2014)


Current meds:Bactrim DS, Azathioprine, Entyvio, levbid
Past meds: Pentasa, Lialda, Prednisone, Entocort, Asacol HD, Prilosec, Lomotil, Lotronex, Nexium, Myfortic, Humira




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09-26-2014, 07:58 PM   #15
kevinlynch
 
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wow shit i thought i had it bad just trying to convince my doc to leave my steroids alone 26 years on prednisolone no problems yet kevin
09-26-2014, 10:00 PM   #16
fozheart
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My worst experience with very long term prednisone, (for lupus) was when my colon perforated! It did not CAUSE the problem, but the thinning of the connective tissue, ie wall of the colon, just could not handle the infection I had.
09-26-2014, 10:06 PM   #17
DJW
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That's awful
10-05-2014, 09:54 PM   #18
isaidpew
 
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I was put on 60mg of prednisone on July 4th after a pretty bad flare up and it took a couple weeks but then the side effects really started to kick in. Over the past two months I've gained about 20 pounds, which is about 15% of my body weight. I've had people ask me if there's something wrong with my face because of the moon face. I have striae all over my back from the weight gain in assuming. Sometimes I'm really happy and excited about going about my day and other times I just want to sleep and not talk to people. I also feel really weird sometimes, like I don't know what's going on and everything is really confusing. I have had some acne but not enough to complain about. And I'm 15 so I have to deal with all of this while being in high school. I'm tapering now, thankfully, and I should be completely done with the taper in about 6 weeks. I honestly can't wait.
10-05-2014, 11:54 PM   #19
aideen33
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Torn between the bloated belly/moon face, mood swings, and joint pain
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Dx'ed (June '14) Crohn's colitis w/ possible small bowel involvement, Pyloric Stenosis. Asthma, Multiple allergies, pre-diabetic, unexplained tachycardia, hypertension, restless leg, and pos. ANA, waiting for rheum. referral for possible lupus
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