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Anyone on prednisone LONG term....with success...

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Posted 7/14/2009 4:09 PM (GMT 0)
I am tapering - down to 5 mg. this week every other day.  I have been on prednisone for 6 months.  Only 40 mg. for one week, 30 mg. one week and then 20 mg. for many weeks and then taper.  I was trying 6 MP but blood tests showed it was not therapeutic in the doseage that I can tolerate so doctor took me off.  Now on rectal meds only - Cortifoam 2 times a day and Anusol 3 times.  All I can manage right now.  I am getting worse - more blood, cramping, etc.  Waking up once again sick - nausea, cramping, sweating, etc.

So, I would love to be on low doseage of prednisone - maybe 20 or 15 mg. to control the bleeding and UC.  Anyone have experience with this?  I am older and not afraid of long term problems but would keep a close eye on problems - blood tests often, etc.  I know several people who have COPD who are on prednisone like forever - they can only breathe that way.  I think that would work for me controlling UC.

ElaineNY

Posted 7/14/2009 6:27 PM (GMT 0)
Hi Elaine,

There is one gentlemen who RARELY ever posts. But he is maintained on 5 mg of Pred a day. He has regular blood tests to check his adrenal function. He says the 5 mg Pred a day does the trick for him. He is a older long term Crohns sufferer and this helps to keep him in remission.

Hope that helps.

Hugs
Gail*Nanners*
Posted 7/14/2009 6:48 PM (GMT 0)
Quick Answer:

Some doctors are fine with letting patients be on lower doses of prednisone for years, while some doctors are more conservative. I have talked to a crohn's patient from this forum who has crohn's and asthma, and is on prednisone at varying doses (probably 10-40mg). He has been on pred since he was younger (maybe 12 y/o), he is now about 23 and is still taking pred. I believe he did report taking Fosamax now, to assist with osteoporosis...which is very unfortunate for someone his age. Chances are you may find a doctor ok with this, but if you DO start to head down this road, it is usually advisible to take calcium supplements, to help your bones out.  Also, many folks consider taking Entocort if they really don't wanna step away from using steroids. Entocort is usually only effective for the terminal ileum and ascending colon, however, so that may not be whats best for you, and you may well only get by with the more systemic prednisone.

A few things to consider...your GI may have you try methotrexate injections...which is in the same class of drugs as 6mp or Imuran, but by taking it subcutaneously, doesn't usually cause as much stomach upset etc. So there are a few other meds out there to try, without going to the biologics like remicade etc.

Side Note: prednisone should also be helpful for your arthritis...but may further upset your GERD

Posted 7/14/2009 7:32 PM (GMT 0)
I've been on prednisone for most of the last 16 years or so, at varying doses. I have always been trying to taper, but only had minimal success. With the addition of Xifaxan a few years ago, I have been able to get down to about 7mg consistently, which I am relatively happy with. I would like to be off entirely, just because of the damage pred has done over the years, but at this point I don't know if that is possible. It does seem to be the only thing that I respond to when I am flaring. I have had to do bursts and then it takes me a long time to get back down. My bones are pretty much shot. I can break a rib sneezing even with all the extra calcium and stuff the doctors have thrown at me to try to prevent bone loss. But, prednisone kept the CD in check when nothing else would and gave me my life when my kids were little so I wouldn't trade it for the world.

I have one doctor that is OK with my prednisone (but due to insurance issues, he will be changing soon), one who doesn't seem to care either way, and one who wants me off like NOW. We'll see what happens when my PCP changes next month. Good luck.
Posted 7/14/2009 8:18 PM (GMT 0)
Thanks everyone. Camjames - my new gastro doctor - specialist with 30 years experience really wants me off the prednisone - he thinks the rectal meds will be enough. He also stated that I was too old to do Remicade - too much risk.
We will see. I have to go to Albany in a couple months to see him again and just keep doing the rectals for now.
ElaineNY
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