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06-22-2010, 10:26 AM   #1
donna martinez
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prednisone

i've been taking 60mg of prednison now for almost 3 weeks. i think it has taken quiet a toll on me mentally and i ask my gi about it. he said he will keep me on until he does another colonoscopy in 6 weeks. from reading other posts on here that seems a bit long. any suggestion?
06-22-2010, 11:41 AM   #2
katiesue1506
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That may be a bit high of a dose, usually you start out at 40mg, however I was on 60 mg my first time for about 3 or 4 weeks and then I was bumped down to 40mg and I started to taper. I would think 60mg for 9 weeks is a bit overkill. I would call and ask him if you can start to taper.
06-22-2010, 11:45 AM   #3
MapleLeafGirl
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I have never been on 60 mg. I started at 40 for two weeks and then started to taper. That does sound like a long time to be at 60 mg. I would definitely call him back.
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06-22-2010, 02:28 PM   #4
Zalanicht
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I was on 40 for around 2 months and I think that's a little too long. I thought I was going crazy on 40 mg then I was told about my friends mom. His mom has MS and she was on 1000 mg in the hospital and she explained she turned into a different person.
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06-22-2010, 04:38 PM   #5
donna martinez
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well i just got back from the gi. he told me that he would probaly keep me on for a total of 3 months and then taper off. i asked him about eating and he said eat whatever i want because diet has nothing to do with crohns. he just said in a flare to stay away from dairy. he said the goal of treatment is to control the disease but from my research it sounds like this disease has a mind of its own and hits when ever it pleases. he contradicted me by saying one of his crohn's patience has a flare about every 3 years and the rest pretty much have their disease under control. i'm thinking about looking for a different gi, what do you guys think?
06-22-2010, 04:46 PM   #6
katiesue1506
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Second opinions are always a good idea. With Crohn's I found out the hard way that its better to have a university doc that specializes in Crohn's versus a run-of-the-mill "gives old people routine colonoscopies" doc. Really gotta search around for a comfortable doctor, if you find another one, just have the current office transfer your care and records to the new place.
06-22-2010, 09:19 PM   #7
AmyWooden
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I definitely agree with katiesue. You really need to shop around when looking for a doctor. If you're not comfortable it's never a bad idea to shop around.
As for prednisone. I was once on 80mg when I was first diagnosed (about 20 years ago). Can't remember how long at that dose, but I became prednisone-dependent as the specialists could not find another medication that worked for me. These days, however, if I do have to go back on prednisone my doc usually starts me at 40mg.
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06-22-2010, 11:17 PM   #8
MisB
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I was on 40 mg for 6 weeks and now down to 27.5 mg. GI wants to taper slow, but with all the side effects my GP is moving it faster. Also had to change GI's. My first GI was telling me I could eat whatever I wanted, but I didn't trust him. Even on a low residue diet, I still kept having attacks. Found a new GI. He said my colon was so inflammed in 2 places that I needed to be on liquid diet for a while. I've been doing better. Also on Remicade. I hate giving advice because I feel like I'm still learning, but if you don't trust your doctor I would try to find another one. It worked for me.
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06-22-2010, 11:43 PM   #9
donna martinez
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I think he is giving me too much prednisone not to mention he said he will tapper it off in two weeks kind of scares me. tomorrow i will be calling another GI.
06-23-2010, 02:06 PM   #10
Awbrey
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I agree I would get another opinion I feel that diet has a lot to do with the disease. I def feel much better when I eat less and watch what I eat.
06-23-2010, 03:15 PM   #11
Jennifer
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I was on 65mg for almost a year. My crohns just wasn't under control and the Pred wasn't working and I had to get surgery. Point is, it depends on the situation. One dose doesn't work on everyone and some of us may need more while others need less. Although the things you said your GI said would make me want a second opinion. You have to be comfortable with them as your life and well being is in their hands, so shop around as others have said.
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06-23-2010, 03:41 PM   #12
jessefrancis
 
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I was on 120 in the hospital recently during my first known outbreak.
I am down to 60 now and at home and doing well but I can sure feel the toll.
I cant wait for my next appointment to get down to 40.
Doc put me on Azothioprene to switch out as time goes on.
The pred has helped immensely but it makes me kind of crazy too.
Best wishes.
06-23-2010, 05:41 PM   #13
MAD
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Hi there, I was on 60 mg Prednisone for over 8 months and yes it took a big toll on my brain, they have finely taken me off them now ofter taking them for 2 years.

I does make life a lot better if you like your doc so keep looking for a good one.

Take care
06-26-2010, 04:53 PM   #14
stevew073
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i was on 60mg of this for a long while maybe up to a year and ended up with steriod induced type 1 diabetes and now i inject insulin 4 times a day !
06-27-2010, 07:28 PM   #15
ameslouise
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Wow. A doctor who has all of his patients' crohn's disease completely under control except one? Sounds like a miracle worker. I would ask him what his secret is... and then seek another opinion. Any doctor that claims that kind of success rate with Crohn's is full of sh*t IMO.

Good luck and I hope you are able to start the taper very soon. - Amy
06-27-2010, 07:35 PM   #16
Sue-2009
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Ames---Your funny! Sue

Wow. A doctor who has all of his patients' crohn's disease completely under control except one? Sounds like a miracle worker. I would ask him what his secret is... and then seek another opinion. Any doctor that claims that kind of success rate with Crohn's is full of sh*t IMO.

Good luck and I hope you are able to start the taper very soon. - Amy
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06-27-2010, 09:01 PM   #17
iminflamed
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well i just got back from the gi. he told me that he would probaly keep me on for a total of 3 months and then taper off. i asked him about eating and he said eat whatever i want because diet has nothing to do with crohns. he just said in a flare to stay away from dairy. he said the goal of treatment is to control the disease but from my research it sounds like this disease has a mind of its own and hits when ever it pleases. he contradicted me by saying one of his crohn's patience has a flare about every 3 years and the rest pretty much have their disease under control. i'm thinking about looking for a different gi, what do you guys think?
shocker. And people wonder why I hate GI's so much.
06-27-2010, 11:52 PM   #18
donna martinez
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Join Date: Jun 2010
Well i've been researching other GI but it doesn't seem like very many accept my insurance. They do have a hospital out here with a teaching school. I think the accept low income patients. I don't know what to do, any suggestions. I'm willing to pay for the consultation but if they prescribe different medication does insurance cover a prescription from a doctor that doesn't accept their insurance.
06-28-2010, 08:07 AM   #19
katiesue1506
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It depends on what type of insurance you have. Mine will cover out of network costs. I had to get stuff done at my university health center and it was out of network for all insurances, but mine still attempted to pay 70%.
06-28-2010, 03:19 PM   #20
hainman
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hey guys,its sounds like your GI is messing you about,i started at 40 i think then down and down till i got to 5 ml then stopped,next day wham symptoms started again,i got diagnosed last month wae osteopenia coz of the pred,everytime i get close to coming off them i hit a brick wall and flare up big time,looking like having all the bowel removed and the bag put in but im waiting to see if theres a chance i can get humira as ive tried everything else and have just been put on modulen and im trying manuka honey at my own choice,i must admit i thought the NHS in uk was shit but hearing your problem with insurance i take it back,i hope you get it sorted donna.the longer your on the pred the higher risk of other shit happening,my GI are desperate to get me of them but my body willnae let me(shakes a fist at myself lol)so im due to speak to surgeon soon just so that WHEN nad not IF i have OP then im familiar with what lies infront of me.anyhoo chin-up guys it could be a hell of a lot worse,H
06-28-2010, 03:58 PM   #21
Silvermoon
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Anywhere between 10 - 60 mg is a regular starting dose... 40-45mg being the most common, but 60 isn't unusual. Length of time you are on that dose can range from 4 weeks to 2 years, but there is definitely increased chance of worse side effects the longer you are on the medication.

As with everything else, dosing, and length of time spent on the medication is different with everyone. But you do, definitely need to find a doc you are comfortable with, and then continue to follow through with them, as they will get to know you and how you react/respond to different meds.
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