New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Jayrose
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/27/2009 9:57 AM (GMT -6)   
I just found this site today. I was hoping to find some people to talk to. I'm 22 and was diagnosed in 2006 with UC. I've been on Prednisone for almost 2 years now, and I hate it. I'm also taking Asacol, 6MP, enemas at night, and a probiotic. I'm having mild symptoms right now, and my doc isn't sure if it's C.Diff. or a flare. It has really been a roller coaster ride with this disease...just when I think I'm getting better, I turn around and I'm running to the bathroom every 10 minutes (especially in the morning). I'm really just hoping to find some people like me - a support group, really - people to talk to that will truly understand...

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/27/2009 10:01 AM (GMT -6)   
Welcome! You've been on pred for two years?! Wow! That's a really long time...my doc said he won't allow me to be on it for more than two or three months at a time because of the potential long term side effects. Have you talked with your doctor at all about Remicade? Hope you find some relief soon. And yes, this is a great place for support!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/27/2009 10:08 AM (GMT -6)   
well you have come to the right place for people like you....this is a great forum loaded with people that have symptoms ranging from almost none to almost being hospitalized... what is your current pred dosage? usually if you are taking less than 30 to 40 mg's you are tapering off....it doesnt seem too effective in dosages under that, and it isnt a very safe maintenance drug... it doesnt usually do much for me when under 30mg... i am at 10mg right now tapering off from 40.... my doc's will not let me stay on that dose for more than a month or two. unfortunately my symptoms come back pretty harsh when tapering below 30mg...

i just started taking imuran and we are going to give that a shot before going to the biologics. if it doesnt work, remicade is my next choice. i have been in a really bad flare since october, and this one is sticking around... i have had uc for 15 years and am now 35... it has been a rollercoaster ride for me as well.... i have learned to cope in various ways but it has really limited my lifestyle... for now i will deal with that and hope for a cure....surgery is my last option that i will use only in a life threatening situation...
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections weekly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


Jayrose
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/27/2009 10:09 AM (GMT -6)   
I know, it seems like it's been forever...I had a severe flare in June of 2007, thats when my doctor (at that time) put me on 40 mg Pred. A few months later when I was feeling somewhat normal, he had me go to 20mg. I tried getting him to ween me off of it but for some reason he wouldn't try other options. I decided to change doctors and my new (and current) doctor has been wonderful. He doesn't understand why my previous doc had kept me on Pred. Right now hes trying to ween me but I'm having A LOT of difficulties coming off of it. I'm finally down to 5mg though...
Diagnose in 2006 with left sided UC.
Currently taking:
Prednisone
Asacol
6MP
Enemas
Probiotic


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/27/2009 10:31 AM (GMT -6)   
I had the same GI for about 12 years and recently changed to a specialist in Pittsburgh...he is more aggressive and I am liking him so far. My previous GI would treat me with Asacol and pred only - never tried any of the newer stuff and that finally came to an end. I am hoping for Imuran to work, but if I have to try Remicade I will....other than that, there are no more drugs out there to try....but if they all fail I am going to continue to experiment until I am told I have to have surgery...

It is rough going through your twenties with UC. It is certainly no fun and it interrupts your lifestyle in a big way... this is a great place for support and to find people to talk to, vent, rant, etc.
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections weekly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


Jayrose
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/27/2009 10:39 AM (GMT -6)   
My doctor hasn't even mentioned Remicade, or Imuran. I know he will want to exhaust those options before even mentioning surgery. But at the same time, I'm at the point where I'll opt for the surgery if it means no more Prednisone and feeling normal. If I don't have C Diff, my doc said I'll have to get scoped again...4th time in 3 years.

This seems like a really good place to visit and know that we're not alone in this battle.
Diagnose in 2006 with left sided UC.
Currently taking:
Prednisone (5mg)
Asacol (3-400mg tablets)
6MP (100mg alt. w/75mg)
Mesalamine enemas (nightly)
Probiotic (daily)
Dicyclomine (as needed)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/27/2009 12:59 PM (GMT -6)   
Jayrose said...
I know, it seems like it's been forever...I had a severe flare in June of 2007, thats when my doctor (at that time) put me on 40 mg Pred. A few months later when I was feeling somewhat normal, he had me go to 20mg. I tried getting him to ween me off of it but for some reason he wouldn't try other options. I decided to change doctors and my new (and current) doctor has been wonderful. He doesn't understand why my previous doc had kept me on Pred. Right now hes trying to ween me but I'm having A LOT of difficulties coming off of it. I'm finally down to 5mg though...

While he's trying to ween you off of pred I don't understand why he doesn't also have you on some type af maintenance med like imuran or asacol...pred is basically a bandaid med or a booster med to give some relief until maintenance meds kick in, it's not meant for long term use, especially when first getting sick/DX with an IBD, it's odd that neither doc you've seen tried you on any maintenance med (imuran/asacol).
 
And if you have inflammation in the rectom (proctitis) then they should have you on rectal meds as well.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 21, 2018 11:58 PM (GMT -6)
There are a total of 3,005,625 posts in 329,243 threads.
View Active Threads


Who's Online
This forum has 161787 registered members. Please welcome our newest member, melzissa.
258 Guest(s), 2 Registered Member(s) are currently online.  Details
Ss800, John T