Maintenance drugs

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Mackster
Veteran Member


Date Joined May 2007
Total Posts : 768
   Posted 7/26/2009 10:02 PM (GMT -6)   
I know there's plenty of 'maintenance medications' to keep UC in abeyance, I happen to be using azathioprine (6MP). Although it seems to be doing the job so far, I've never felt comfortable taking this powerful and risky drug. I've been on it for two and a half years and still get the sneaky feeling that my immune system is precariously compromised, and I'd prefer to try an alternative.

Especially with all the crazy bugs flying about hospitals nowadays, not to mention the ever growing swine flu epidemic.

Does anyone know what is considered the safest oral (long term) maintenance drug at the present?

mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/26/2009 11:54 PM (GMT -6)   
safest maintenance? not sure...i was always nervous with those "maintenance" drugs...sounds like a drug company's way of saying guaranteed monthly income

Age:31 Married with children.
--
Ulcerative Colitis cause: In 2003 I took Accutane for about 4 months, strong side effects of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC -should have understood the IBD warning and should've never taken the dangerous drug
known as Accutane.
May 2004- May 2009: Prednisone, Asacol and many other med's that did not work well-Remicade was great for 16 months then suddenly stopped working.
---
May -June 2009: Pancolitis- chronic 2 month flare up that put me out of work and made me seriously think about surgery.
June 24th 2009: elective colectomy/ileostomy at Barnes/Washington University.
August 2009: planned rectum removal and j-pouch construction.
October-November 2009: planned Reversal.
----
Summary: Suffered 5 long years with severe Ulcerative Colitis, Anxiety and depression.
No more diseased colon. No more running to the bathroom 20+ times a day. No more cramping and bleeding. Satisfied with first surgery.
Red Text


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/27/2009 1:17 AM (GMT -6)   
Drug companies love using scare tactics to sell maintenance drugs for Colitis. They don't give the real picture.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).


Capsid
Regular Member


Date Joined May 2004
Total Posts : 300
   Posted 7/27/2009 5:21 AM (GMT -6)   
I've been on azathioprine for 6 years, 200mg per day. I haven't noticed any problems with my immune system and no side effects. It works very well for me.
Mark
 
200mg/day azathioprine


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/27/2009 10:46 AM (GMT -6)   
I've usually heard ASAs referred to as "maintenance drugs," not powerful immunosuppresants like 6mp. ASAs have a much lower risk of long-term side effects, from what I've read and tend to be better at "maintaining" remission rather than causing remission in tough cases. Lately, a study showed sulfasalazine has the benefit of lowering the risk of colon cancer in IBDers of ten years or more.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/27/2009 10:52 AM (GMT -6)   
The most common maintenance drugs are Mesalamine (Asacol), Colazal and Sulfasalazine. For some people they are not effective, and then immunosuppressants may be used.

And no, it isn't a drug company trick. It's just chronic medication for a chronic condition.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/27/2009 10:59 AM (GMT -6)   
I stayed in remission for a couple years on azathioprine. I have no long term side effects and never found myself to contract colds or viruses any more easily than others around me. I have been flaring for so long now that being able to take a 'maintenance drug' and be in remission sounds like a dream. I would not want to upset that situation!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 7/27/2009 11:11 AM (GMT -6)   
Don't worry about that Swine Flu, back in 1975 they tried making a big deal out of the swine flu and far more people died from the vaccine than the flu. I think it is a scam myself. Now they are trying to do the same thing again.

If you can avoid immune suppressing drugs I would, I am guessing Sulfasalazine is the safest long term maintenance drug providing you aren't allergic to sulfa.

Mackster
Veteran Member


Date Joined May 2007
Total Posts : 768
   Posted 7/27/2009 11:53 AM (GMT -6)   
Thanks for the help guys. I was on the 5ASA's initially, both oral and rectal. I reacted badly to the suppositaries and the enemas. When I say 'reacted' I mean feeling really sicker than I already was, awful headaches and nausea usually the following morning. I found the rectals very difficult to administer but I should put that down to me having severe inflammation at the time. Maybe I should ask my GI to let me give them another try as there is less inflammation now.

Capsid. Like I said I've had no adverse problems with 6MP over two and a half years, but you can't get away from the fact that it's risky drug. Having to get blood tests every 3 months might mean that it could trigger something at any time.

Without my GI's knowledge, I made a decision to taper down from 150mg to 50mg over a period of six months. I realized I was taking a calculated risk. As it turned out I suffered no adverse affects.
I had a c-scope in Jan. (8 polyps removed--no infammation) My GI wanted another c-scope in July, I just had it last week (3 polyps removed-'active' UC) I asked him what 'active' meant, he said it indicated 'inflammation'. I then informed him about my tapering the azathioprine, he didn't seem too perturbed about it but told me to go back up to 100mg and see him in a month, when he intends to try me on salofalk?. I suppose the one piece of good news is that I don't have another colonoscopy for 3 years.

I will always wonder if my tapering the 6MP caused a recurrence of the inflammation. Even though I had no apparent 'symptons' ie blood, D, etc.

There's a lesson in here somewhere. Probably something like 'don't take unnecessary chances'.

I still don't trust 6MP though!

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/27/2009 11:58 AM (GMT -6)   
I know what you mean, about Imuran/6MP- I've been taking a pretty hefty dose for a few years now, & it works pretty well. Every now & then I freak out a bit, thinking my immune system is about to just quit on me. But so far, so good! For the most part. I guess the 5ASA's are the first maint. drug- I was fine on them for years then lost it. Then you can add the immune modulators, & do well on those for years too- think of the transplant patients who take gigantic doses every day for the rest of their lives. I think even the biologics can be used as a sort of maintenenance drug- granted, there's no evidence to show that long-term use is a problem, because there's no long-term use yet! But I know myself & my GI aren't too ready to quit the Remicade just yet. The concept of a maintenance med is NOT a scare tactic- it's no different than a diabetic needing insulin, or the transplant patient needing immune suppressors, etc.

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


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/27/2009 2:59 PM (GMT -6)   
     Been a UC sufferer for almost eleven years.  First drugs prednisone and Asacol.  After the prednisone taper, stayed on Asacol but since I was in remission, decided to stop taking it after a year....big mistake.  Suffered a flare two years later and place on Colazal because my UC is located in the rectum.  Been on Colazal ever since.  Suffered another flare in 2003 which is when my doctor put me on 6MP along with the prednisone.  Make a long story short....still suffer yearly flares.....this is my second flare in less than a year though.  Now on 100 mgm of 6MP, 30 mgm of prednisone (weekly 5 mgm taper), Colazal, Cort enemas nightly and Canasa suppository in morning.  Also on Benicar for high BP, probiotics, Fish oil supplement, calcium.   Prenisone has left me with osteoporosis, insomnia and mood swings...ugh, I hate this disease.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/27/2009 4:03 PM (GMT -6)   
I will take the risk of a strong drug, if it works.
I'm not trying to live forever, nobody does.
I'm trying to finally have a quality life that is not burdened with UC.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/27/2009 6:35 PM (GMT -6)   

Probably those of you who can tolerate strong drugs should be happy.  I failed them all - or they failed me!  Anyway,  my new gastro doctor took me off 6 MP - could not take strong enough to do any good without getting so sick.  I have been on rectal drugs only for over a month while tapering from 20 mg. of prednisone and a week ago stopping.  Doc told me I am too old for Remicade, etc. as there is too much risk!

NOW - symptoms of UC returning - blood, mucous and low pain and cramping. No diarrhea - YET!  No sure what to do next.  Have to call doc I guess - such a fun disease!!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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