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Horrible, horrible prednisone

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Ulcerative Colitis
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Posted 1/1/2012 4:12 PM (GMT 0)
I have been in patient for almost 2 weeks now, and have just been switched to oral prednisone. It is the worst stuff EVER! I passed out last night from throwing up, and when I was on the ground I was in hysterics (I should also mention that my mom and grandmother BOTH had to be put into mental institutions because of their reaction to prednisone. When I spoke to the doctor this morning he pretty said there was nothing else to do and that I would have to take the meds. I really can't believe there is no other system than eiteher having bloody diarrea for the rest of my life! The doctor seemed really uncaring of how I feel and have to remain on the medication or pretty much go home. I'm at the point of wanting to go to another hospital it's getting so bad :( The nurse actually yelled at me when I passed out.

And the thing is, I don't want to go home if I'm not feeling better, you know?
Posted 1/1/2012 5:00 PM (GMT 0)
Sorry to hear Twizliz, I think i can speak for all of us when I say prednisone is not a desirable method of treatment for any of us, but one of the most effective to get the very worst symptoms under control. Depending how much pred. yourt taking right now, it shouldn't be too long before you start to notice some changes in your bowel habits. How many mg of prednisone are you on btw?

Try not to carry the stigma in your head that you will end up in the position your mother and grandmother were in when taking this medication. Do whatever it takes to relax, and tell yourself you can get through this, its difficult at first, but know that others have gone through alot of pain like you and are here to offer support when you need it.
Posted 1/1/2012 5:04 PM (GMT 0)
Though I do agree with stereofidelic89 on most of the things, this is the first time I have aheard of anyone being institutionalized as a result of Prednisone. Are you REALLY sure?

And if you don't stand Pred then I guess you don't have much choice than to go under the knife. Pred is the only sure-shot way of controlling flare.
Posted 1/1/2012 6:03 PM (GMT 0)
I agree that pred is a great drug for helping the bleeding and inflamation however I would prefer to never go on it again. Have you tried rectal meds? I find it strange that you were ok on IV steriods but not oral...course I'm not a doctor. However, if your not comfortable with the doctor and the nurse is being rude...they should not yell at you...geez like you want to throw up, then maybe changing hospitals would be a good idea and the very least you need to speak to someone there where your at and complain about your treatment.
Posted 1/1/2012 6:07 PM (GMT 0)
I think the doctor and nurse both sound horrid. Do you have someone who can be a patient advocate/mediator for you? You do have other options. What about remicade? I was on 40 mg of prednisone once for about 8 weeks and it had no effect, in fact my symptoms got worse. I then had remicade and it put me into remission very quickly so I could get off the prednisone. There have been times the prednisone worked. I think if you have had such a horrible reaction to the prednisone then your doctor should be discussing other options available to you. Maybe you should switch hospitals. It sounds to me like you need a new doctor. Find someone who can advocate for you. It is hard to do when you are sick and feel like you are at the mercy of the system. You know your body better then anyone else.
Posted 1/1/2012 6:11 PM (GMT 0)
twizliz77,

Sorry to hear the position you are currently finding yourself in.

I agree with stereo - don't put negative thoughts out there on ending up in the same mental state as your mom or grandma.

However, I do have to tell you that many do not  find prednisone a great solution to ending a bleeding flare - it didn't work for me at all.

I would suggest you get another doctor  to take care of you, and perhaps another hospital, where they are a little more empathic of your disease and your concerns, no?

Is Prednisone the only thing they are treating you with?

If you, that's not very proactive.

There are so many other alternatives and combo treatment methodologies.

I hope you start to feel better soon.


 

Posted 1/1/2012 7:31 PM (GMT 0)
I have decided to seek another option, especially after the one I was just speaking with said that it sounded like I might just have a touch of "IBS" Really? I've been in patient for 2 weeks with blood and it's IBS? I am thinking about going to MA General
Posted 1/1/2012 8:20 PM (GMT 0)
Didn't you have a colonoscopy recently? Didn't that provide conclusive biopsies? I agree that a 2nd opinion is probably for the best. Have you had your stool tested? You could need antibiotics. I agree with the others who said prednisone isn't helpful for everyone but there are a lot of options. It seems like you're getting pushed in different directions and not thoroughly explained what options are available. I hate pred too, I'd prefer just about anything that taking that stuff again!

Please look at the resources thread on the top of the forum - it discusses treatment options and alternatives.
Posted 1/1/2012 9:18 PM (GMT 0)
OMG! Definitely get to another facility if you're able.

There are MANY documented cases of people who have any form of psychological issues such as depression/anxiety/bipolar who have been sent into utter downward spiral from taking systemic prednisne.
One of my best friends had that happen to her, and was institutionalised.

My mental fragility/family history would have me in the same direction if pred was on the list....I would refuse it except for a very fast taper, and even then I would be prepared to totally drop it at an instant.

Liz.....you are in a fragile emotional and physical situation, and I strontly urge you to gain the trust of another doctor in anoither facility to get you sorted out asap and hopefully can get you tapered off the pred. OR....to administer another med to possibly offset the synptoms you're having and what could happen based on your family history..

While pred is a miracle med, and I'm eager to state that....the long-term effects for those who are fragile can be catastrophic. All some of us need is the trigger.......

Then where does one go?

q
Posted 1/1/2012 9:29 PM (GMT 0)
Prednisone is not a drug you want to be on long term. It can do a lot of irreversible damage to your body. BUT it works great to stop inflammation in it's tracks and get you stable. Once you can achieve that, you can discuss with your doctor a maintenance drug that works for you. It also sounds like you need to find a new doctor. I went thru several GI doctors before I found one that actually cared and helped me. Hope you can find something that works for you and find a doctor who will help you. You need more options than just Prednisone.
Posted 1/1/2012 9:31 PM (GMT 0)
Pred might stop inflammation in its tracks...but one has to taper off it, and many will have increased symptoms, plus..the tapering process can be very long.

q
Posted 1/1/2012 9:37 PM (GMT 0)
Imuran or Imural Azathioprine made me so ill, I got another drug called Clipper 5mg and boy what a difference, I feel quite well now and bleeding has almost gone. had two Tb tests and going for a chest Xray next week, not sure why yet.
Posted 1/2/2012 2:20 AM (GMT 0)
I know how you feel on the pred. If I was on a dose higher than 20mg which was a lot of the time, I would go into hysteria. I have a 2 year and 4 year old kids. Not nice for them to see mummy like that! GP ended up putting me onto some non-addictive anti-depressants while I was on high doses of pred. Wasn't keen for anti d's but did the trick. Now off both pred and anti d's. Hang in there. All the best.
Posted 1/2/2012 4:30 AM (GMT 0)
prednisone is the worst drug i've ever taken. i was on iv prednisone in the hospital in august and then was on it 3 more months orally. the main reason i was given prednisone was that i was too weak to take 6mp or remicade. maybe that's the case for you? i was ony 90 lbs and i was throwing up all my foods so the doctors said prednisone might help manage the inflammation until i could start 6mp and remicade. so that's what we did. the prednisone didn't really help at all in a positive way- just made my colon pains even worse and i gained 40 lbs of water weight- but luckily i started the other meds and was able to taper off of the prednisone. i will NEVER go on it again.
Posted 1/2/2012 5:54 AM (GMT 0)
Yes, going from an IV dose to oral sounds like you are tapering. The tapering is worse than the high doses. I went crazy on predisone. I was begging my pdoc to put me on something because she had taken me off all meds because the ones I was on were contraindicated with predisone. (I'm bipolar and predisone acts as a trigger for the symptoms) I was put on Zyprexa which is a mood stabilizer and that did the trick. However I gained a lot of weight on Zyprexa and I was switched to Lexapro when I got off pred.
Posted 1/2/2012 3:26 PM (GMT 0)
     I suffered with UP for twelve years and was on prednisone FAR too often.  It gave me full blown osteoporosis and you certainly do NOT want that to happen.  Get another opinion ASAP.
Posted 1/5/2012 9:11 PM (GMT 0)

lifesover said...
Imuran or Imural Azathioprine made me so ill, I got another drug called Clipper 5mg and boy what a difference, I feel quite well now and bleeding has almost gone. had two Tb tests and going for a chest Xray next week, not sure why yet.

Can you find out why you are having an xray, before agreeing to it? Please don't agree to tests without being given a sound reason (other than that they are covered by insurance). That's why we have runaway healthcare spending in the U.S. Pet peeve of mine.

Posted 1/5/2012 9:28 PM (GMT 0)
They often do a chest xray before giving Remicade to patients. Perhaps that's the reason. I had one but then my UC improved and I didn't start remicade.
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