Posted 3/13/2008 7:54 PM (GMT -7)
Yes, this is my first time on it.  I was dreading it would come to this but I have to think the outcome may be worth it if I start feeling better.  Thank you for your comments and what to expect.  My Dr. didn't say anything about calicum but that makes total sense, thanks.  Good advice about the medical history! 
Dx in 2004 with proctitis with a sigmoidoscopy, Feb of 2008 had my first colonoscopy and revealed moderate/servere colitis (50cm).  Been in a bad flare for over a year.  My specialist retired and had to wait nearly 6 months to referred to a new one.
Previous Medications:
Asacol maintenance dose 2004 - 2007
Aug/Sept 07 proctofoam twice daily
Asacol 4800mg (4x400mg) three x daily
Salofalk enemas 4g Nov-March 08
Now on:
Prednisone - 40mg/daily for 3 weeks
Mezavant - 4800mg - 4 tablets daily
 

 

Posted 3/13/2008 9:40 PM (GMT -7)
definitely get a calcium supplement and don't get discouraged if the pred doesn't kick in right away. since you've been flaring for so long, it may take a couple of weeks. my first flare was really bad and i'm sure it took a couple of weeks for me to stop seeing blood and then more time to reduce the number of BMs i was having per day. so hang in there and hopefully it will help!!
oh i just noticed you're only on it for 3 weeks. that wouldn't have been enough time for me at all but hopefully it will be for you.

and the second time i had to take pred it did work much quicker because i started it before things were terrible. also i didn't need to be on it as long. even that was an 8 week course i think...

hopefully you can communicate well with your new GI and do whatever works for you!
hope you're feeling well soon.
28, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Asacol, probiotics, ground psyllium husk, fish oil, prenatal

may you live all the days of your life.

Posted 3/14/2008 6:24 AM (GMT -7)
take calcium 500mg 3xday and ask your doc about taking fosomax as well. Also watch your salt, try to have as little as possible and eat a banana a day for potassium.

I cried a lot the first month, it is a shock to your system, I let my friends and family know that I would be off and I have been really consicentious about it, so that has helped. I had hot flashes the first month too. I have had about all the side effects, but it is better than flaring bad!
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007 - partial remission since 03/08
Prednisone 40mg 1xday (taper 5mg a week = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.

Posted 3/14/2008 9:24 AM (GMT -7)

Thanks Beth75 and Hekela.  It is good to know that it may take some time to see the benefits of it.  Do the side effects get any better or just get better when you start to taper off of it.  I have to take 40mg for 3 weeks and then see my GI about tapering down the dose.  How long does it take to come off of prednisone?  I have been reading that people lose their hair with pred. I thought you got hair growth with it?!?  Great, so maybe you lose your the hair on your head and gain it on your face....fun times.  What is fosomax?

Hekela, I find it interesting that you said in your bio that you your dx after having a baby.  When I went in for my colonoscopy last month the nurse ask if I started having symptoms after having kids.  I said yes after my third one (I think...I might have ignored symptoms for longer).  She said it was common for that to happen to women, like the pregnancy triggers it.  I had never heard of that.  I know after my 3rd child was born I just thought I had hemmroids and didn't deal with it for a while.  My GP thought the same until I finally saw mucus/blood but that was over a year later. 


Dx in 2004 with proctitis with a sigmoidoscopy, Feb of 2008 had my first colonoscopy and revealed moderate/servere colitis (50cm).  Been in a bad flare for over a year.  My specialist retired and had to wait nearly 6 months to referred to a new one.
Previous Medications:
Asacol maintenance dose 2004 - 2007
Aug/Sept 07 proctofoam twice daily
Asacol 4800mg (4x400mg) three x daily
Salofalk enemas 4g Nov-March 08
Now on:
Prednisone - 40mg/daily for 3 weeks
Mezavant - 4800mg - 4 tablets daily
 

 

Posted 3/14/2008 2:07 PM (GMT -7)
I am a little different than most, I am on pred for a dual purpose w/many other meds, I can't say when it helped me how much it helped me, if it did help me it took 1.5 mos (most people I think start to see relief in less than a week) I got worse before I got better b/c I had to stop taking asacol cold turkey.

For me besides the first month being at 60mg, I did not see much changes w/my body until 3 mos later when I was on 60/40mg alt days, then I got moonface, a 'fu man chu' mustache (that I wax monthly) and now instead of needing to shave my legs every other day or so, now it's every few weeks (I think my leg hair is now growing on my face, hahaha - just kidding) I just got a couple of dark brown chin hairs last week and they are not soft hairs either, felt like cactus!

Last month month #6 on 40mg of pred I began losing hair on my head (I have really good hair too, I don't think much of the rest of my outside appearance but hey I know I have good hair!) I also have a lot of hair so it is not noticeable yet. I used to clean the hair out of my brush monthly, now it is every few days. I ordered some Nioxin to help, it's a hair product that is supposed to help w/the appearance, I think????

I will be tapering pred by 5mg a week (from 40mg) until I get to 10mg then hopefully down to 5mg and My Kidney Doc says that I will most likely be on 5mg for a year. I have so many questions myself, I hope I can lose my new neck and chin while on a lower dose of pred??

I will be my own science experiment, BWHAHAHHAH!

Fosomax is to help w/bone density loss from long term pred use......maybe you wont be on it for long? I would check into that and the calcium (btw, my nails are stronger than ever!), shouldn't hurt to take calcium but dbl check.
Also, if you are not on it longer than a couple of months or so, you might not get all the side effects.  My only regret is that I wish I was better monitoring my salt at the begining and maybe could have avoided my new neck and chin.

I have good hair and nails but not so good colon and kidneys, somethings gotta be good, right?


Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007 - partial remission since 03/08
Prednisone 40mg 1xday (taper 5mg a week = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.

Post Edited (Beth75) : 3/14/2008 3:12:53 PM (GMT-6)

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