when do you know Imuran has failed?

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UCinNC
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Date Joined May 2007
Total Posts : 528
   Posted 2/4/2008 1:56 PM (GMT -6)   
for those of you for whom Imuran "failed," how long did you stay on it before reaching that conclusion?
how did you know it had failed?
is it a failure if you have to regularly use steroid enemas?
what constitutes a failure, exactly?
thanks
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 396
   Posted 2/4/2008 2:30 PM (GMT -6)   
I had to wait around 3 months for it to work well.
12 Asacol
100 mg Imuran


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/4/2008 3:31 PM (GMT -6)   
I was on the sister medication, 6MP. It was at the 1.5 year mark that I considered it a failure. It's a failure if it doesn't get you successfully tapered off of prednisone. That should happen within 3-6mos of starting the immunosuppressant. A failure is controlling UC with prednisone. Prednisone should not be used long term (over 4 months).

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
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/4/2008 4:06 PM (GMT -6)   
Sue - do steroid enemas count as steroids the same way oral do, in your opinion?
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/4/2008 4:22 PM (GMT -6)   
Good question and I don't think I can answer it. You are absorbing the steroid enema but to what degree I am not sure. Best to ask your GI for the specifics.

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
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/4/2008 4:28 PM (GMT -6)   
Sue - I understood "failure" the same way you're defining it w/ regards to prednisone. I can stay off the pred on Imuran, but I am constantly "smoldering" and on the edge of a flare and so my quality of life isn't so great b/c I never know when I will need a bathroom. so, I don't know if that means I am failing Imuran or not. I am very confused. have a GI appt. on thuirsday. thanks for your thoughts.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/4/2008 4:58 PM (GMT -6)   
I guess to me it would be if you have been taking it several months and seen little or no improvement, raised the doseage and gave that a fair try as well and no improvement.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/4/2008 4:58 PM (GMT -6)   
That's how I was living too, on the edge. It really came down to me admitting I had no quality of life. I wasn't too sick but I wasn't well. It was at that point I realized that 6mp was not working for me plus, I was not able to wean off prednisone. I could only get down to 5-10mg before flaring again. As a layperson, I don't think the Imuran is working or has not started working yet.

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
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/4/2008 5:57 PM (GMT -6)   
sue - this may be an absurd question since it is completely hypothetic and irrelevant, but..... if remi had been available when Imuran failed you, do yuo think you would have tried it?

also, 6 years after your surgery, how is your quality of life? how many times a day do you go to the bathroom? I have heard that after surgery the system gets a new rhythmn, and that even though it is a lot better than flaring UC, someone who has had surgery may still never go as few times as non-IBD people.....

I have been thinking more and more about surgery lately (as if you can't tell, lol.....) and I have always thought you sounded very level-headed from your posts, so any thoughts on pro/cons of surgery would be appreciated. thanks
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/5/2008 5:55 AM (GMT -6)   
Regarding your question about the steroid enema.....yes, it's the same thing as oral steroids in regards that if you can't get off them even while on an immune suppressor then it can be considered a failure. Because one can become steroid enema dependant just as someone can with the oral. Even though a smaller dose of the steroid actually enters the bloodstream compared to oral, it still can have the same build up over time.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
To help Healingwell - click here: DONATE
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"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/5/2008 8:21 AM (GMT -6)   
If Remicade had been available I probably would have tried it because I was desperate for remission and willing to try anything. I really did not want surgery. In hindsight I am grateful that Remicade wasn't available. It would have been too new of a drug to fully understand the long term effects. As it was I was worried about the long term effects of both prednisone and 6mp (6mp has since been proven safe).

It's now 7 years later and I have never looked back nor ever regretted my decision. I honestly have no idea what my frequency is, it does not seem to get in the way of my life. I am a long distance hiker (100-200) miles and don't seem to take bathroom breaks more than my peers. Most of the time I use the restroom it's because I have to urinate. However, often times the pouch empties at the same time. With a pouch there is no pain, no urgency, and no prolonged restroom visits. To empty a pouch is as quick as to urinate and most often there is no odor. I may go more often then I did with UC but I spend less time overall in the bathroom. I am also healthy!

As with any major surgery there are risks. As for this surgery the recovery is long, about one year. That's not one year of doing nothing, I returned to work 3 weeks post surgery and continued to get back to hiking. But I was fatigued in that year, had severe joint pain from pred use, and had the pouch adaption to go through. Life is not perfect with a j-pouch, or ostomy, or k-pouch, but life is so much better than living with chronic disease. If you are thinking of surgery I would recommend you get a consult from a top knotch CR surgeon who has lots of experience. Ask to speak to several of his/her pouch patients. Honestly it wasn't until I met my surgeon that I could comfortably make a decision.

Looking back, if I had known what I know today, I would have opted for surgery after the first year of my refractive flare. I sometimes get angry that I lost 2.5 years of my life being sick and taking 22 pills per day. Since surgery I have not seen my GI, or been ill. It's really amazing to be healthy.

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
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/5/2008 9:19 AM (GMT -6)   
Wow Sue! Thanks so much for that insight. I try not to let myself get caught up in the "what will I do when I flare again" debate, but I still find myself debating remi vs surgery... I find your experience to be very uplifting.

So glad to hear that you're so very active (I can't imagine hiking 100 miles!) and so healthy! Cheers :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/5/2008 9:46 AM (GMT -6)   
Hi Sue - Thanks for your detailed and thoughtful post. I really appreciate it.
I actually do have a surgical consult next month, with a top CR surgeon at the GI clinic at UNC-Chapel Hill. I believe he has done about 700 colon removal surgeries, and he is doing 1-step j-pouches laproscopically (though I don't yet know how many of those he has performed and will ask him that). I am not sure where I am headed with regards to surgery... I just know my quality of life needs to improve, and because I have not yet had my kids (I am engaged right now so we are thinking about it a lot), and because I am generally concerned about the long-term implications of remi, I am thinking of surgery instead of remi. Remi may not be a good option for me since you can't get pregnant on it and since I, personally, feels that it leads to a cycle of always being a first-generation user on a new/powerful drug, which is something I am uncomfortable with.

if you don't mind, would you give me some ideas of questions that you, personally, think are important to ask a surgeon. Obviously I will do more research, but any thoughts you have would be great.

by the way, where are you located? where did you have your surgery? how did you pick your surgeon?

thanks again for taking the time to answer my posts. It is so helpful and meaningful to have the opportunity to solicit your opinion since you have been through this already.

if it is easier, I could email you.... I checked for your email but it is listed as unavailable in your profile. if you would prefer that, please let me know and I will provide you my email address.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/5/2008 10:01 AM (GMT -6)   
I would be happy to supply you with a list of questions that should be asked at a surgical consult. I think I had created about 25 questions for my surgeon and I found it really helped because once I got into his office I was scared and completely forgot what I wanted to ask, having the list really helped. Give me a day to work on it and I will email it to you. A surgeon who has performed 700 pouches is very experienced, you can also check his/her references at www.j-pouch.org

I live in Santa Barbara, CA. I had my surgery in Los Angeles, about 2 hours south. I was referred to my surgeon via my insurance company. I did not know of his reputation until I met with him but discovered that he had performed about 2000 pouches and is one of the top CR surgeons the west coast. My surgery was 1.5 hours, very fast, which I think helped in my recovery. I was fortunate to have him as my surgeon and right after my surgery he stopped taking insurance! A good surgeon is key for this surgery, it's quite complicated.

I have updated my profile so you can email me if you would like! Feel free to ask me anything, if I don't have an answer I will find someone to refer you to.

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


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/5/2008 10:06 AM (GMT -6)   
Oh, and most importantly, according to my surgeon one of the best reasons to have surgery is to regain quality of life. I know sometimes, having been chronically ill, we can rationalize our health and we can get used to having more and more life taken away from us. It wasn't until I accepted the fact that I had a very low quality of life and that it was reason enough to have surgery. It helped me to understand that I would get a better quality of life than I was living. It was a lightbulb moment for me!

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


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/5/2008 11:24 AM (GMT -6)   
I am going to email you tonight or tomorrow, when I have more time (right now I am at my office and am supposed to be working!). but, one quick question. did you actually have the colon removed and the j-pouch built in an hour and a half? that sounds insanely fast to me. I heard more like 6- 8 hours for a one-step. did you even do a one-step? was it laproscopic??

oh, I am so excited to email you!!! thanks again,
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/5/2008 11:49 AM (GMT -6)   
I had the traditional 2-step surgery, so yes in 1.5 hours I had my colon removed, my j-pouch constructed, and my ileostomy placed. It was fast but experience leads to shorter surgery times, barring complications, of course. I asked for a 2-step surgery and the reason was I was so tired of being sick all I really wanted was to feel well. I had my ileostomy for 8 weeks between surgeries.

For many less experienced surgeons, surgery is in the 4-8 hour range.

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


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/5/2008 12:23 PM (GMT -6)   
hmmmm, well, that might be a reason for me to look around for a more experienced surgeon. I had heard that the one I am talking to next month is one of the best in the southeast US, but I have a sister that teaches at Stanford, so many I should see what is available out there in the bay area or at the stanford hospital. maybe I could stay at her house awhile.... anyway, that is really good info. I had thought the 6-8 hour range was standard, good to know it isn't necessarily.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/5/2008 1:41 PM (GMT -6)   
Your surgeon sounds as if he/she has lots of experience, I wouldn't necessarily shop around but I would recommend that you go to www.j-pouch.org and ask for surgeon references in your area so that you have choices and personal recommendations. I don't think it's necessary to go to Stanford (they get low marks for this surgery) and feel that your current surgeon might fit the bill. Laprascopic surgery takes longer than the traditional but the recovery is supposed to be faster. It's hard to compare my surgeon with others, he's been performing this surgery since 1988, he should be good at this point!

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

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