Prednisone taper experiences

Just went over my labs today w/kidney doc, my kidneys are responding well to the prednisone (4.7grams a day of protein loss to 3.2 a day) and I think it's gotten even better since my lab last week.

UC has not been responding to the predisone, or so I thought....I started the hydrocorisone enemas a week ago and today I have had 4 encouraging bm's (not much blood) after my 4 morning bm's w/blood, did start the cipro yesterday too.

the kidney doc asked how I was feeling on the pred and I was like, well I bawl my eyes out (i'm not a crier) and he said it would be okay for me to do 60mg one day and 40mg the next day, then 60, then 40 and so on..that sounds like a huge jump to me.  So I did 55mg today and will taper myself, b/c I am scared of what if the pred is helping my UC and it could be a lot worse??  Also got a hemi, so happy about that!

Please let me know how you tapered......

Thanks!

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Beth, 32

UC Diagnosed March 2000

Hydrocortisone enemas 1xday

Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.

Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007

Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

I have tapered 4 times. The first three, my GI had me taper by 5 mg every 7 days. This last time, he had me taper by 10 mg every 7 days. I noticed more issues with tapering this last time. I assume it was because it was a faster taper.

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Current Medications:

- Asacol (4 pills, 2x per day)

- Rowasa (1 enema daily, as needed)

- Folic Acid (1 mg, 1x per day)

- Calcium (600 mg, 2x per day)

- Prenatal Vitamin (1x per day)

I have tapered many times at 2.5 to 5 a day and it was fine and yes the whole your body adjusting thing goes up and down. This past year I had a terrible pregnancy that resulted in beign on steriods for the last 3 months of my prenancy and I was tapered 5 mg weekly. They were thinking possible c-section due to stuff and well needed me off the prednisone before I dilever because healing is so terrible (especially being cut open like that) when you are steriods. Oh my gosh either I tappered to fast or entered into a new field of my disease. I ended up being on pain killers longer then my last c-section and as a result of the steriods and possibly tappering to fast. I have cushings and adrenal fatigue. I just felt like sharing this becuase I think the 60/40 thing is crazy and you are right to do 5 at a time. Doctors don't want you to know the actual things that will happen to you when on steriods. So sad it is that way so luckily you have us! Too many times we find ourselves self perscribing because each UC case is a personalized thing.

Sorry about the spelling errors above on my other post.  To put more details into min towards the end I was doing 2.5 too.  What symptoms are you having I wonder if they are similar.  Even if you aren't bleeding and have diarreah there is still something that can be going on still.  It is the nature of the beast I swear.  Ok I just might be preaching to the choir here.  But what are your other symptoms?

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Survivor of UC since 1997

Currently on: Asacol, Lialda and ocassionally prednisone

A million different vitamins would take to long to list!

Here are the crucial ones for me!

omega 3's

liquid Calcium

folic acid

vitamin c or any antioxidents

Seriously don't need kidney stones again!!!

I am down to 5mg per day and have like 4 more days left of pills. I have tiny barely visible spots of blood now, but I am still wanting to come off. My UC is so much better that I eat like 1 sugary thing a day and I know I should stop that. So I WIll stop the sugar and come off prednisone finally.

I do have tremendous aches that I didn't have before. my back, hips and knee. BUt I think eating better and drinking extra water helps my joint pain.

Good news: my Acne that was all over my upper body and face is almost completely cleared up.

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27/M/TX

Severe Colitis (pancolitis) since January 9, 2005

currently:  I must say Under Control

RX/day:  5mg prednisone; 2400mg Asacol; 150 Azathioprine

OTC: Probioplus DDS; seldom use vitamins & other natural treatments

FYI: 3 weeks of SCD diet and caprylic acid put and end to my 3rd and worst flare ever. (But i'm not in SCD anymore)

ok the aches and pains is sort of like cushings syndrome. Google it and read about it! It is side effect of steriods. Your body has had a pretend cortisone in your body for too long and so it doesn't really try to produce its own resulting in the aches and pains. Your body isn't naturally helping itself with swelling or pain in general anymore. But you are correct with excersise and water and eating healthy and most importantly time you will notice a difference. It has taken me 6 month to feel better and I am still in need of improvement. I have come a long way though.

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Survivor of UC since 1997

Currently on: Asacol, Lialda and ocassionally prednisone

A million different vitamins would take to long to list!

Here are the crucial ones for me!

omega 3's

liquid Calcium

folic acid

vitamin c or any antioxidents

Seriously don't need kidney stones again!!!