do all drugs eventually stop working???????

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Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 3/12/2009 7:30 PM (GMT -6)   
Hey all.
 
I was diagnosed with left sided uc in 1999. During my first flare asacol alone put me into remission. During my next few flares I needed increasing amounts of rowasa/pentasa enemas plus the original asacol tp put me in remission. For the past 3 years, mesalamine has stopped working to put me in remission and I have had to use vaious forms of steroids to achieve remission.
 
How have medications worked you all? Do you think that this disease eventually becomes unresponsive to ever escalating medicinal interventions? My doc says no, that it is an unpredictable disease but I am not sure I believe him given my own experiences. What do you think?

potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 3/12/2009 8:06 PM (GMT -6)   
I was dx in 2003 and only use asacol and canasa. I take 6 asacol a day, then when flaring normally bump up to 9 a day. so far that has worked for me.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/12/2009 8:14 PM (GMT -6)   

about 20-30% of UCers will have to opt for surgery.  The reasons are due to drugs no longer working, or a diagnosis of dysplasia or colon cancer.  The vast majority of people with UC will be able to manage their disease through the end of their lives. 

 

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


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 3/12/2009 10:12 PM (GMT -6)   
For me, so far, the Asacol tabs and Salofalk enemas is what I've used for 20 years. I hope and pray that the success continues for a long time yet.

Not all can take 5ASA meds unfortunately, but there are some topical options in the steroid department, There is going to be one that will be released in the colon rather than in the terminal ileum as is Entocort. I believe that will be out this year.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/13/2009 6:12 AM (GMT -6)   
On this forum, I have already read many peoples' accounts of having to opt for surgery due to the medicines no longer working. So the answer is yes. This disease does become unresponsive to ever escalating medicinal interventions. For how many people, I don't know.

You can't go by how many people have had surgery to determine how successful the medicines are, because many of us have given up on Colitis medicines and are managing our Colitis successfully with alternative treatments. Others of us are doing both.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/13/2009 6:27 AM (GMT -6)   
Yes, it's unfortunate. But it also comes with your diet and management system. Before I was diagnosed in 2008 Feb, I ate nothing but five carbonated drinks and cheesesteak/hamburgers/pizzas. So I think my intestinal flora changed significantly. Then I had a severe stomach flu then UC came in.

In June of 2008, Asacol stopped working for me during my first flare after being diagnosed but now somehow from all the supplements that I have been taking, my body's pH level is up and I'm not even on any meds anymore. I used to be on 6mp and prednisone for a couple of months but I also did detox as I went up and apparently I had Candida growth in my intestinal track from taking prednisone and 6mp due to lowered immune system. So what now?
I may start taking Asacol only because only my doctor recommends it.

I believe that listening to your G.I. doctor isn't the best thing to do. Trying alternative medicines helped me greatly even though I did spend a couple of hundred bucks on supplements but they put me to remission and taking no meds.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. still crapping out yeast.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, garlic, aloe vera

in semi remission


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 3/13/2009 7:07 AM (GMT -6)   

It does seem that some drugs work well in the beginning, but eventually the uc symptoms come back.  I don't know if it is from the drug stopping working or just because the nature of the disease is to circumvent the drugs and find a way to do damage despite being attacked by our meds.

For me personally, I also think that there is a little bit of the Placebo Effect when I start a new medication as I am usually sure "that this time the medication is going to work!"


UC diagnosed 10/05, first symptoms 1983
Starting remicade 3/24/09
* asacol 12/daily * rowasa pm * cortifoam  
 Culturelle Probiotic - prilosec - metamucil capsules
past rx: colozal, lialda, canasa, 6mp
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/13/2009 2:45 PM (GMT -6)   
I think one of the reasons the drugs stop working is that they don't solve the underlying cause of Colitis. As a result, the underlying cause worsens, and it becomes harder for the medicines to stop the symptoms.

For example, one of the reasons I have Colitis is due to consuming too much fructose. If I didn't stop consuming high fructose corn syrup and foods high in fructose, then my body would have an increasing harder time digesting the fructose, and my symptoms would get worse despite the fact that I was on medications (if I were on them).

Another reason I have Colitis is that I've been on antibiotics for too long for too many years. Fecal transplantation and Probiotics put good bacteria back into the colon. They resolve the issue of not having enough good bacteria. Colitis medicines do not do this.

One thing I've noticed is that I've heard doctors say that nobody knows why one gets Colitis. But is this really true? It's not that no one knows, it's that there are many different reasons why someone can get Colitis; so our doctors don't know why we have it. This is something we need to research ourselves. We shouldn't expect our doctors, who aren't with us every moment, to be able to figure it out.

Doctors have been very reluctant about their patients doing their own research and making their own decisions. But today we have a vast wealth of knowledge that is easily obtainable over the Internet. Okay. A lot of it is bogus and fraudulent. But we can usually weed these out. Times are very different than they were 20 years ago.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/13/2009 3:48 PM (GMT -6)   
I would say that my experience with my doctors is vastly different than yours. When I had UC both my GI and my internist were all in support of me trying new treatments and diets. They were both very interested in knowing if I had found relief in the many (see signature line) alternative treatments I found. I was sick before the internet was helpful but I did spend a lot of time researching UC at bookstores, libraries, and health food stores. I attended local CCFA meetings as well. There might be some doctors who aren't thrilled with their patients going against prescribed treatment but I would guess that they do really want their patients 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

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