Should I seek remission?

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Peety
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Date Joined Mar 2008
Total Posts : 2855
   Posted 2/28/2009 12:30 PM (GMT -6)   
I always have symptoms, even when I'm not in full flare. I was hopeful when I learned of food sensitivities, but that only gave me temporary relief, symptoms returned, and I even started flaring again this week. Prednisone seems to have zapped things back to "normal" (for me) but I have a rare appointment Friday to talk to my GI about new treatments.
 
In years past she has always said there is nothing else that is worth the side effects. But now I think I am ready to take risks to see if there is opportunity for improvement in my quality of life, which has been controlled my my UC for decades now since I can't usually go more than about 2 hours without a bathroom. I am otherwise very healthy, my immune system seems to be strong. I'm not an alarmist about side effects, there's no way to know what will happen to me just because it happened to someone else.
 
I guess I'll ask about Humira, Remicade, mp6, Imuran, everything I can remember from here. She will probably again say that, since I have managed this long, never better but never worse, don't do it. But I'm tired of managing! 
 
Our doctors have so many different view on these things, hers will be just one more.
What do you all think I should do?
Which of these heavy duty treatments should I try first, if any? 

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; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 2/28/2009 12:56 PM (GMT -6)   
Boy, only 2 hours between bathroom visits is no way to live.
I know that no one can decide for you, but the Cortifoam enema's are not too bad, and they help a lot. Even 6mp has been a great help to many. I'd rachet it up a notch to see if it brings relief...you can always change your mind if you want off of them. The Humeria and Remicade are the big guns, so I'd save them for last.
Just a thought or too. Maybe get a second doc's advice who is from a teaching hospital or university setting?
Daughter,15 diagnosed 1-08 w/ UC .
Asacol, Prevacid, Flagyl, Prednisone 50mg, major flare, now off!, Hosp. four x this yr. Low residue diet still, an
6MP, Colazal ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Cortifoam enemas 4xweek
Trying probiotics, Niferex, fish oil, and Mangosteen for kicks.
update:
Had 4th infusion of Remicade(12-08), and still on all of the other drugs, except Flagyl and Pred. Better, no remission. In a drug trial for children. Living on a flare's edge.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/28/2009 1:37 PM (GMT -6)   
Definitely see about Remicade- I know it's scary, but if you're still on prednisone, you may as well try something else. Give it a shot- if after 6 infusions, you see no change, then you can quit. But it seems like it's at the point where you have to either go to heavier meds or surgery. Imuran is good- I do like it, but it really took a good 8-10 months to see any change. And I had to up my dose after 6-7 months also. I believe the biologics are becoming more of a first-line defense nowadays- they seem to really jump start remision, & the thinking is, why try & muddle along for a year on pred with little results?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 2/28/2009 2:20 PM (GMT -6)   
When I was first diagnosed, and medicine wasn't working, I went straight to Remicade first. That is always the fist step before Humira. I was put onto Humira due to my body not responding to Remicade. I'd say Remicade is cost efficient depending on your health insurance. My insurance was able to give me the treatment for free. Humira is a brand drug, so I pay for it. Also, Remicade you end up going a few months at a time. Whereas, Humira, you get 4 shots at a time, and you have to give it to yourself every 2 weeks. It does save a trip to the hospital to get the treatment though, but.... everything has it's positives and negatives.

I'm not too sure about the Imuran though. It does help, I had a double dose of Humira and Imuran for about a year, so.... no real advice there. Although it did help me gain remission.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/28/2009 8:22 PM (GMT -6)   
You really have many options at this point. But your question is...what is going to improve my quality of life without crazy side effects? I am here to tell you that some side effects really are not worth it. I'm glad to hear your immune system is healthy, but if you do Prednisone with Remicade you could be in a for a real change.

One of the reasons I opted for the cure is because my side effects were absolutely horrible and very painful. My body could not fight any kind of infection and they turned to staph, which resulted in abscesses that required removal, resulting in open wound care. OUCH!!! I also did not react to Remicade and any other levels of medication or other types were just ridiculous for me to try because I was reacting to NOTHING! 40mg of Prednisone was even becoming a joke.

Hopefully your doctor will suggest another level of medications for you. I do hear great success stories with Remicade. Some people on this forum have been using it for many many many years. Others see wonderful change almost immediately and others do take a little while.

I wish you the best of luck!!!
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/28/2009 11:54 PM (GMT -6)   

Peety, you have a right to be as symptom free as treatment can make you and as you want to be. If your doctor isn't treating you aggressively enough, get a second opinion or change doctors. My first GI had me on Colazal, Azathioprine and Entocort, and I was still going 15 times a day. I changed doctors. My new GI put me on Remicade and I was in remission in a month, and have been in remission ever since.


Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/1/2009 1:15 PM (GMT -6)   
As my GI put it to me - being in a constant state of semi-flare is not good for your body either.  Staying in a constant flare increases your risk of colon cancer.  So you have weigh your options.  Increased risk of colon cancer from staying in constant flare and not feeling well all the time - with increased risk of possible lymphoma from taking either Imuran/6mp or Remicade and feeling great all the time.  I know what I chose - you have to choose for yourself.
Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/2/2009 12:24 PM (GMT -6)   
Thanks all for your thoughts.
I hope she is open to it, because it's so hard to change doctors and I like her.
Then, I'll have to figure out where I would need to go, what will insurance cover, all that stuff.

I really looking forward to something good happening.
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; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 3/2/2009 3:08 PM (GMT -6)   
     The 6MP took about three months to "kick in" while taking prednisone.  I usually have a flare every year towards the end of March or September.  Seasonal for me too.  I've had a great past four months, symptom free.  Keeping my fingers crossed I won't get a flare this year.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

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