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Is anyone on a maintnance dose of prednisone?

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Posted 12/2/2007 4:22 AM (GMT 0)
The only thing that will take the pain away for me is prednisone. My doctor and I keep dropping the dosage.Right now I am at 7 1/2 mg. Is anyone else on prednisone for long term period? 

Vid53

Posted 12/2/2007 4:50 AM (GMT 0)
Hi Vid, I'm trying to get on a maintaince dose. Right now I'm alternating days with 20mg then 10mg. Doc wants me to get on 10mg daily and if it works, he'll keep me there indefinately. I think the side effects lessen lots, at least I hope they do!!!
Granna
Posted 12/2/2007 2:28 PM (GMT 0)
Hi I am on 20 mgs of pred, and not doing so good on it with lots of bathroom trips. I was on other meds but had to go off them I have been on pred. since Jan. with only 2 weeks off it. I have lung problems but have found them worse since pred. so don't know what I am going to do .Have an app. tomorrow to see GP and get results from lung function test. I was wondering if low roughage diet helps with your pains, it helps keep mine down. lol gail
Posted 12/2/2007 2:45 PM (GMT 0)
vid, how long is long term? Has your doctor tried other drugs like Imuran, 6MP etc? Then you have Remicade and Humira, not to mention the surgical option.

The new thinking is that Prednisone shouldn't be used for maintenance, as long term effects can be pretty devestating. If you can't get off them, you are considered steroid dependent and other drugs should be tried.
Posted 12/3/2007 12:42 AM (GMT 0)
VIC53

I have been using 5mgs of Prednisone plus 500 mgs of Azulfidine each day for the last 18 years. I've naever had any short term or long term effects from using Pred., and I've been in remission all of those years.

I am starting my 53rd year with severe Crohn's disease, it began in 1956 when I was 28 years old except it wasn"t called Crohn's then, but was referred to as "Ileitis" - nine surgeries including 6 major resections which caused a loss of 40% of my intestines.

I'll be 80 years old in early February, I'm not steroid dependent, I'm feeling great and seriously thinking about getting married again.

All I can say is, If there's going to be any long term effects, they better hurry up and get here.


Respectfully,

Panayoo
Posted 12/3/2007 1:38 AM (GMT 0)
Vic53- I am on a maintenance dose of pred. It has ranged from 60mg to 10mg over the last year and a half. I am on other supportive drugs and have had 1 resection. The main time I have had side effects from the pred has been during tapering to a lower dose. I have to do a slow taper reducing the dose every two weeks else I get severe joint pain. I am hoping since starting the Humira several months ago...which I feel is really starting to kick in well...I can finally come off the predinsone.  As for the pain...the predinsone doesn't do anything for that for me.  The only thing I can take (can't take straight tylenol) is percocet.  Most days I can make it through without anything as long as I eat right.  It's usually the low grade fevers that get me or the Humira blowing an infection or cold way out of proportion compared to healthy people.

Panayo!

You are a true hope and inspiration to all of us here! We'd love to hear more of your experiences!
Posted 12/3/2007 1:42 AM (GMT 0)
Thank you for the reply.My doctor and I have tried all avalible meds and nothing seemed to work except prednisone. I have crohns through out my small intestines and have had crohns for 11 years. They only problems I have had. was an anal fistula and pain ontop of my belly button as food was working its way through my system. 

Fourtunatly I have not been as sick as most of you and hope I wont need any surgery in the near future.

Posted 12/3/2007 3:59 AM (GMT 0)
Sounds like you and I are in the same boat. I've been on 'maintenance' doses of Pred for the last 7 years...l between 80 and 20. usually 40 just to function. 20 when on these various drug 'studies'.

After a year and a half on Humira, i quit that study last week. I wasn't doing well. It did me OK before i tried to taper off of the pred. below 20mg of pred and my body didn't like that. i never was able to get 'stable' so back to 40-60 pred just to be able to go to work.

so normal maint is 7-20??
Posted 12/3/2007 4:17 AM (GMT 0)
The highest dose I needed was 30 mg. for about 3 weeks and then weaned down until it flared up again.

Posted 12/3/2007 4:28 AM (GMT 0)
Hello
Yes i am on 60 mg of prednisone being brought down now on 40 . what are your side affects to the prednisone . mine are hot flashes and sweats :
Posted 12/3/2007 4:34 AM (GMT 0)
Just weight gain. Does your whole body ache if you get to low on the prednisone?
Posted 12/3/2007 4:49 AM (GMT 0)
Hi
Yes it does and then some . went to the docter friday and he wants to bring me down some poor . really scarey getting off these drugs . plus i am on a couple pain medcine and the docter says it is not my fault that i am addicted ! i been really getting really confussed lately as well but red that was apart of disease
Posted 12/3/2007 4:49 AM (GMT 0)
there is no such thing as a maintenance dose of prednisone. when i began taking it after i was diagnosed my doctor at the time told me it was bad stuff and the list of side effects is bigger than the phone book (boy was he ever right!). this is one medicine, that although it seems to work to varying degrees, doctors hate having to prescribe it for long term use, no matter what the dose. remember, it is a steroid - it screws big time with your body and hormones and everything else. i was on it for over 6 years at doses as high as 60 mg/day for months at a time. i developed a lot of problems from being on it long term, the least of which was osteoporosis. i am a guy but i now know what menopause feels like due to hot and cold flashes and pms too cos it screws with your hormones and emotions and mental state. 6-mp couldnt get me off of it, but remicade did. seriously, imho, i strongly encourage you to talk to your doc about using this for maintenance therapy. i say this from experience.
Posted 12/3/2007 4:58 AM (GMT 0)
After reading this thread, I have decided we need to start a prednisone anonymous forum. And our family/sig others can go to predinon. I have been on pred since Jan this yr. all except for jul and aug. I was on remicade and thought I could wean off ok. Then had a reaction to the remicade and had to restart pred before humira could be started. The most I was on was 40 and the least 10, Also I am on entocort 6 mg and cutting down to 3 now that I have been on humira for 2 mos. Feeling a lot better in my joints. But every time I tried to cut down, I'd get the joint pain and diarrhea. I just have to bear with it for a week or so and then things improve. My doc told me that if I got down to 5, that would be ok. I believe your adrenals kick back in with that dose. Panayo, I also had "ileitis" and "regional enteritis". Gosh I'm 40 yrs into my disease. My side effects are numerous. Sweating, 30 lb. weight gain, (was always size 6 or 8), grouchy, fat pads cheeks and back of neck, bruise easy, thin skin, increased body hair, thank goodness I am blonde/gray, even my eyebrows are getting bushy. I have lost almost 10 lbs since weaning down to 10.
Posted 12/3/2007 5:56 AM (GMT 0)
Hi
yes i agree we do need to start a prednisone form for our sibblings and a few others out there !
the docter has ben talking about putting me on remicade what is
that ?
i have gained alot of weight myself , but say that is one of the side affects .. and what is humira
wow panayo 56 year's and you are still looking forward to getting married ! you go girl !!!!!!!!!!!!!
i am so glad i found this sight .. i have no support myself .. but now i do .. Thanks to all of you .. There is hope out there .
Posted 12/3/2007 6:17 AM (GMT 0)
well want to say Good night to everyone .. Hope all sleeps well !
Redhead ... :
oh that is another problem i have . is sleeping and i do take medicine for that as well .. the docter just put me on vit D this week for my bones . do any of you take that vit D ?
Posted 12/3/2007 6:26 AM (GMT 0)
Although I despise it, I seem to be on a maintenance dose of methylprednisolone.  (Can't take pred)  Comparable pred dose would be 7-12.  Been on it for 6 months and sadly, I don't seem to be able to go off.  (Remicade/Humira didn't work, don't tolerate the immunosuppressants, ASA-5s make me worse... the only thing left until they approve something new!)  I worry mostly about bone density, but also the raised blood pressure while I am on steroids. 
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