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Maintenance low dose Prednisone

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Ulcerative Colitis
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Posted 7/1/2013 11:12 AM (GMT -5)
First let me say Hi to everyone as this is my first post here :) Also, please excuse my English since I'm not a native speaker...

Anyways... It's really difficult for me to maintain remission without at least a low dose of steroids, no matter what other meds I take. My doctor says that the colitis may have become "steroid-dependent".

5 mg of Prednisone is enough for me to stay in a complete remission without any symptoms. The obvious problem is that Prednisone is generally considered to be a short-time drug only and very harmful when used for a longer time.

My friend Mr.Google said, however, that there are many people with various autoimmune diseases who take 5 mg Prednisone (or even more) for years.

So my question is - do you have any experience with long-term prednisone maintenance? At 5 mg I don't feel any side effects and I guess that if I do my best to try to avoid osteoporosis I might, at this low dose, do just fine...
Posted 7/1/2013 11:16 AM (GMT -5)
Its fine. My doctor has a few patients that do this. Also some stay on 3mg of entocort for remission.

Have you had a dexa scan to check bone density? If i could feel great on 5mg of prednisone, id stay on it in a heartbeat.
Posted 7/1/2013 11:26 AM (GMT -5)
5 mg is pretty low...I'd be more then willing to take 5 mg till the end of time to stay in remission..As long as your dr takes blood work and no problems it beats the alternative. My mom with chrons took higher does for a year. It had some side effects but nothing she couldn't live with. I Assume you have tried the mesalamine meds..

Rod
Posted 7/1/2013 11:27 AM (GMT -5)
Hi Joanna.

No, but if I'm going to be on Prednisone any longer, I'll definitely ask my doctor about it.

Btw. I wrote Prednisone but what I take is actually called Medrol (methylprednisolone) - I'm not sure if you guys get this one prescribed too. They're very similar with Medrol being slightly more effective (4mg Medrol = 5 mg Prednisone).
Posted 7/1/2013 11:36 AM (GMT -5)
Rodsr: Yes, I have. I'm on 4.5 grams of mesalamine (Salofalk). I guess going higher wouldn't help much.
Posted 7/1/2013 11:43 AM (GMT -5)
Rodsr: btw. Your mom has Crohn? I find it strange that every doctor I asked said IBDs were not hereditary and yet when I look in forums like this one I find many people who's relatives suffer from UC / Crohn as well. Strange...
Posted 7/1/2013 11:56 AM (GMT -5)
I also have a first cousin who has UC like me. My first dr I saw over 42 years ago asked me about any relatives with IBD. At the time I didn't know any. My Mom developed it while in her late 50's...Toxic megacolon was her baptisim into chrons...Almost lost her...I have 3 brothers 2 sisters. None of the others have IBD..
Rod
Posted 7/1/2013 3:50 PM (GMT -5)
I wonder about this myself and even posted something similar a few months ago. Prednisone is a bad drug to be on long term but in almost all of those instances, if not all, the patients were taking higher doses. Your body makes anywhere between about 8mgs and 12 mgs of cortisol all by itself but any time you take that amount in prednisone or higher, your body shuts down and does not make it anymore. That is bad long term but if you are taking a long term dose which is less than that 8-12 then I wonder myself if you really wouldn't have any significant long term prednisone damage. I have yet to find an expert who will answer this question with a straightforward answer. Of course if low dose prednisone doesn't do the trick for you then this would not matter but I believe it just might work in me. So far I haven't had the guts to try it.
Posted 7/1/2013 4:12 PM (GMT -5)
i don't know that IBD IS hereditary. not a single person on either my mom or dad's side of the family has so much as a food allergy. i'm the only one in the entire extended family that has UC.
Posted 7/1/2013 5:08 PM (GMT -5)
It's strange how Drs opinions are so different. My GI says chrons and UC are hereditary.
Posted 7/1/2013 5:14 PM (GMT -5)
Doctors have a lot of education and take continuing education yearly. On top of that they make up their own crap as they go along. Unfortunately, most patients don't realize that some of the info they get from their doctor is the doctor's own personal opinions and not necessarily fact.
Posted 7/1/2013 5:21 PM (GMT -5)
so do you believe what your doc says or not ?

and how do you know something is a fact ?

Posted 7/1/2013 8:22 PM (GMT -5)
i think its always important to do your own research - even if it might just be based off of something your doctor has suggested or said. all of the same journal articles they read are available for free from databases like pubmed when you access them via your library.
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