Would you consider pred if you were me?

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fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 2/18/2009 4:32 PM (GMT -6)   
I've been on Asacol since my post-colonoscopy visit on January 30 and on Rowasa since February 6.  The Asacol alone made some difference and adding the Rowasa made a huge difference.  I'm down to ~6 (much less urgent) BM's a day from a high of 15-20, have much more energy, and am starting to gain some weight back.  However, I think I've kind of hit a plateau as I haven't noticed any additional improvement in the last five days or so. While I am very happy with my progress, I do want to get totally into remission.
 
I see my doctor again on Monday and am considering asking him about adding Prednisone.  What do you think?  Should I just be more patient and give the Asacol and Rowasa more time to work? 
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).


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/18/2009 4:39 PM (GMT -6)   
Hi,
I only take it if I am in a stubborn flare, but you're not doing too badly. Wait...and give the easier meds more time to work. Glad you are doing better!

Total remission is hard to achieve, and may be impossible for many, sorry to say. I don't think my system will ever act normal.


49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Probiotics (Ultimate Flora, 50 billion). Doing much better, but still having some bad days. 

Post Edited (Peety) : 2/18/2009 3:46:11 PM (GMT-7)


UC_Dad
Regular Member


Date Joined Nov 2008
Total Posts : 33
   Posted 2/18/2009 4:43 PM (GMT -6)   
I second Peety. I would wait it out a little bit to avoid using Pred. I too only use it when I am flaring and even then am always relunctant to use it do the length of use due to the tapering that is required to come off of it.

Dx'd June 08 severe UC
30 yrs old
Meds
Asacol 400mg x 9
Prednisone 40mg tapering off now
6-mp 100mg
Canasa
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16284
   Posted 2/18/2009 6:26 PM (GMT -6)   
I would wait too. I was taking 9 asacol a day and was still seeing blood (sorry for the details), I began using 2 Canasa a day in addition to the Asacol and the blood disappeared. I hope it continues to improve.
 
Maybe you could see about using a suppository in the morning? I use one in the morning and one at night.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


jone bone
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 2/18/2009 7:41 PM (GMT -6)   
Wait for the pred. I've been on 12 asacol a day and a pentasa enema nightly and I refuse to take pred unless it becomes a last resort. Five days is not long enough to judge if it will get better or worse. Although if it doesn't get better, or it gets worse, you do wanna nip these things in the bud. Good luck

glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 2/19/2009 1:00 PM (GMT -6)   
I agree with the others, I would wait it out and see what happens. I only use Pred when I'm really sick (10-20 times a day with lots of blood). If you're not having any bleeding, I would definitely wait it out. Maybe you could even try a steroid enema, it might help better than the Rowasa. The ASA drugs make me worse and like Peety said, you may never gain full remission.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
75mg 6-MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 2/19/2009 1:11 PM (GMT -6)   
I am having bleeding...it's hard to judge how much, though, KWIM? The ASAs are definitely helping, but I guess I'm just being impatient! I'm hoping to be going on a job interview fairly soon (fingers crossed!), so I'd like to have some more control than I do right now as it might make for some very awkward moments. It's for a university professor position, so it would be at least a day and a half and I'd be expected to make a presentation as well. Plus, it would involve flying from my home near Seattle to Madison.
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).


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 2/19/2009 1:37 PM (GMT -6)   
It is a hard call but if you are still bleeding daily I would at least ask your physician about the possibility of using pred. to get this under control. Asking his or her opinion cannot hurt.

Was diagnosed with UC a few months after the birth of my daughter in 2006. I flared with bleeding on and off for almost two years. I would say I had two really bad flares back to back without complete remission in-between... I did not want to go on pred and was nervous about it. I finally gave in and started it in June of 2008. I was on it for three months but I can honestly say it improved my symptoms and FINALLY got me into true remission when nothing else seemed to do the trick completely. I don't think I even realized how bad truly sick I felt until I started feeling better when taking the pred. I have decided that if I start bleeding again I will go on pred without thinking twice. I will not torture myself by holding out for months and months again.

If you were not bleeding, having more than two or three BM's daily or having any urgency I would say keep hanging in with the other medications...
Dx 2006 right after the birth of my daughter
Lialda now down to 1 pill a day!
Canasa on and off as needed
Probiotics Daily
 


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/19/2009 2:59 PM (GMT -6)   
I would definitely wait. Remission doesn't come over night. It might just be that your symptoms are improving very slightly each day now that you're over the major hump. If you are impatient - you can add a suppository to your am routine to give things a boost.
Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/19/2009 3:03 PM (GMT -6)   
I would say no, do not go on pred for your symptoms. Pred should only be used for severe symptoms (fever, large loss of weight, bloody diarrhea, inability to work or go to school) and not for treating a moderate flare. Be patient but be candid with your GI about your symptoms.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/19/2009 6:23 PM (GMT -6)   
Coming from someone who just started on prednisone I would have to agree.  Don't go on it until you have given everything else fair shot.  If I could tolerate the mesalamines, Colazal or others I would still be on them working towards remission.  I know they started to work - just before the side effects took over.  I got so much sicker than the UC I had to quit them all.  I have mild to moderate symptoms and mostly proctities (up about 30 cm left side).  Because of all that I tried and for MONTHS - since last June - I found I had no choice.  Be sure you don't have other choices that are working - even slowly.  When I stopped the hydrocortisone enemas last before the scope- it was 4 days before starting on prednisone and I found out how much the enemas were helping the UC - bleeding and pain got a lot worse BUT also the flu-like symptoms - terrible!
I love the way I feel now but know that I cannot just stay on 30 mg. of prednisone the rest of my life and stay this way.  Hoping the doctor can find a maintenance medication/s for me!
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


ticklengiggle
Regular Member


Date Joined Nov 2008
Total Posts : 23
   Posted 2/19/2009 7:24 PM (GMT -6)   
Being newly diagnosed with UC myself last fall, I find there is a bit of a learning curve involved during the first while. It's hard trying to decipher what is going on with your body, when to ask for help and when to wait. I've decided that learning about the disease is important, but gathering information that your body gives you is absolutely essential. The other important factor is a collaborative relationship with your GI doc, he/she should listen to your input about your particular experience with your body. Ultimately, it's your body; no one can tell you what's going on better than you (even if its not in the medical vernacular).
I'm realizing that time is my friend, as more time passes, I have more experience with this disease and how to help my body heal. This is probably true for all newly diagnosed UCer's (or any disease for that matter).
In the end, a balance between patience, informed decision-making and self-advocacy probably go a long way to sanity. :D
Good luck with your healing process.
Distal UC (25cm), Nov 2008
Colonoscopy Nov. 2 08: Pathology showed inflammatory changes throughout colon, but ulcerations, friable tissue, etc. last 25cm of colon
Lialda  3.6g (Nov 08);  4.8g/daily (Dec 08)
Canasa supp. 1g (for 3 weeks, from Nov. 5),
Prednisone 40 mg/daily 4 week taper (Nov. 17 ‘08), Back up to 15mg Dec. 20, taper 2.5mg/wk. Off Pred Jan 27…knock on wood.
Rowasa: 4g/bedtime Dec. 20 ‘08, 4g/bed time Jan 19 ‘09
Procotofoam: 1 application/bedtime, Jan 20 ‘09
Prednisone: 30mg taper, started Feb 10, 09.
Prilosec OTC generic: 1 pill every night (the pred upsets my stomach).
Other current meds/supplements: Sertraline, Yasmin, Vit E, Omega 3 FA, Krill Oil, Mupirocin (bacterial rhinitis), Maxalt MLT (migraine), phenergan (nausea).
 
My mother (UC for 20+ years) has been in remission for quite some time (at least a few years). :)
One of my cousins has Chron's dz. :(

I love Cottonelle moist flushable wipes!

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