Ulcerative Colitis Medication Survey Results

Over the past several months, there has been a sporadic option for people to fill out an ulcerative colitis medication survey on ihaveuc.  I apologize for not thinking out too well on how to compare and contrast and present this date, so I am just going to copy and paste what people have submitted with the hopes that it may be useful to others.  Everyone filled out information about the medications that they were initially prescribed, and how effective those were with treating and helping their respective ulcerative colitis.  It’s been quite some time since I reviewed some of these as they’ve been sitting in my inbox some of them for months, and I am sure some of you will find them really interesting, especially when comparing the medications results with your own.

Here are the results, and again I apologize for this not looking too Scientific.  (I barely passed my statistics class in high school as I remember.  But the need for some lengthy science is not really necessary with the data below.  Just by reading what happened with others and their colitis while they were taking prescribed medications should be very clear and many people entered in some great notes which will give you further insight into how the medications did or did not help the UC symptoms.)

Ulcerative Colitis Medication Survey Results Data and Comments:

Person #1:
What medication were you prescribed for your UC first?
Sulfasalazine
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 2nd?
Other
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Other
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 4th?
Prednisone or other Steroids
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Yes

 

Person #2
What medication were you prescribed for your UC first?
Prednisone or other Steroids
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 2nd?
Asacol or Asecol
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Other
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Yes
Additional Comments:

I was only prescribed the first two medications, and I am so fortunate to say they have really worked for me so far. i am almost one year free of any flare-up! June 17 of last year, I had a colonoscopy, during which the doc finally diagnosed me with UC. He had been saying I had IBS and there was nothing he could do for me, until he saw my colon was the size of MARS!! Trying to pass food through my colon was like trying to pass it through a “funnel of sandpaper,” he said! So he put me on the two meds, prednisone and asacol, and they had an immediate, lasting effect. From that point on, I could pretty much eat what I wanted without having a flare-up. I am still more careful than I was before, especially with fried foods and not eating too much red meat, which were definitely trigger foods for me).
I am now on Asacol only (I tapered off the prednisone last October), taking three pills twice a day, which is a total of 1200mg I believe.

Person #3:
What medication were you prescribed for your UC first?
Sulfasalazine
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 2nd?
Prednisone or other Steroids
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Other
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 4th?
Prednisone or other Steroids
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Yes

Person #4:
What medication were you prescribed for your UC first?
Pentassa
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Other
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 3rd?
Prednisone or other Steroids
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
No
Additional Comments:

I wish I had only been on four medicines. I’ve been on every single group pyramid-whatever drug possible.

From Pentasa to Flagyll (antibotic) to 6mp to Methotrexate to Remicade to Humira to
SCD!!!!!!!!!!!!!!!!!! (Lifesaver)

I’ve done everything. Name a drug and I’ve done that family of drugs. Name a treatment and my parents got it for me: Whipworms? check. Only NG feeds? Check. Only TPN feeds? Check. Massage? Check (I wish I still got that one…:D) Stand on your head and spin around three times? I would have…

Literally the only thing left was a permanent ostomy. At that point the doctors said there was no harm in trying SCD while we wait to schedule it. Thank goodness my Mom forced me to do it.

Person #5
What medication were you prescribed for your UC first?
Other
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Pentassa
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Prednisone or other Steroids
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 4th?
Prednisone or other Steroids
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Yes
Additional Comments:
My doctor wants me to do the remicade infusions before removing my colon. i have no money forthe drug and no coverage for it so at this point unless the Canadian government will cover it which they won’t unless you have Crohns I will not be using this drug.

Person #6:
What medication were you prescribed for your UC first?
Prednisone or other Steroids
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Rowassa (enemas)
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 3rd?
Asacol or Asecol
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
No
Additional Comments:
Allergic to Prednisone. At first i felt fine, and then became pretty much crazy (not really) but hallucinations, suicidal thoughts, couldn’t eat, threw up all the time. To me it was a nightmare. The Rowasa was okay but made my heart race and gave me anxiety. (doctors where stumped by that) And the Asacol didn’t seem to bother me that much but I did feel a little dizzy on it. I didn’t stay on it very long. That was three years or more ago and now I am having a flare for the first time since then. Gonna try the SCD.

Person #7:
What medication were you prescribed for your UC first?
Asacol or Asecol
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Lialda
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 3rd?
Prednisone or other Steroids
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 4th?
Rowassa (enemas)
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between

Additional Comments:
Also on Remicade since Jan 2010 – Have never been in full remission.

Person #8:
What medication were you prescribed for your UC first?
Asacol or Asecol
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 2nd?
Rowassa (enemas)
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 3rd?
Prednisone or other Steroids
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
No

Additional Comments:
I was prescribed more than 4… None helped, which is why surgery is being planned right now.

Person #9:
What medication were you prescribed for your UC first?
Asacol or Asecol
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Prednisone or other Steroids
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Other
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between

Person #10:
What medication were you prescribed for your UC first?
Sulfasalazine
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 2nd?
Asacol or Asecol
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 3rd?
Colazal
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Yes

Additional Comments:
Imuran (azathioprine) helps me stay in remission, but if I am off of it for more than 1 week, I have a flare-up.

Person #11:
What medication were you prescribed for your UC first?
Asacol or Asecol
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Prednisone or other Steroids
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Sulfasalazine
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
No

Additional Comments:
My 4th medicine is Remicade, however that is not helping my symptoms at all, so I will probably be trying my 5th medicine, Humira in the next week or so.

Person #12:
What medication were you prescribed for your UC first?
Asacol or Asecol
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Prednisone or other Steroids
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 3rd?
Prednisone or other Steroids
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 4th?
Prednisone or other Steroids
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
No

Additional Comments:
After 13 years with U.C. I ended up being disemboweled. I now have an ileostemy. Now trying to decide on whether to stick with that to get reconnected.

Person #13
What medication were you prescribed for your UC first?
Pentassa
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 2nd?
Pentassa
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Other
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 4th?
Prednisone or other Steroids
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between

Additional Comments:
sorry just a comment: not sure it is the correct place to post.

I am not 100 % sure the medicine is the same, in Italy it is called Pentacol and then the steroid Topster…I will have to check the name of the steroid.

Quite amused to find out that doctors are the same all over the world…When I first asked if there was a connection with food..the answer has always been “No”…but by experience I can tell some food is like poison to me: wheat for example…and living in the country of pasta and pizzas..and I am not celiac.
Ciao
Laura Italy

Person #14:
What medication were you prescribed for your UC first?
Pentassa
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Prednisone or other Steroids
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Asacol or Asecol
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 4th?
Sulfasalazine
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Yes

Additional Comments:
Sulfasalazine had some negative side effects though. I had nightmares and decreased libido…along with pee that looks like I drank a gallon of hi-lighter fluid.

I started taking Mesalazine which is the same class of drugs and no more side effects. I am having a flare up now and am resorting to steroids (prewhatsamacalllit). I hope its not from the new meds, we’ll see.

Person #15:
What medication were you prescribed for your UC first?
Asacol or Asecol
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 2nd?
Rowassa (enemas)
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Colazal
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 4th?
Prednisone or other Steroids
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Yes

Additional Comments:

I also tried sulfazine along the way — no real difference from Asacol and its friends.

Ultimately, I was unable to come off prednisone without a flare, so we tried 6-MP. I didn’t tolerate it at all, coming close to acute pancreatitis. From there we circled back through Asacol-like drugs and enemas to no lasting avail. I then tried Remicade, and it was a miracle. Within a couple of days, I felt “normal” for the first time in years — no symptoms whatsoever. I continued Remicade at 8-week intervals and it worked great with no apparent side effects for about 8 months. After 8 months, I started getting symptims 6 weeks after treatment, then 4 weeks.

I’m now trying the SCD diet.

Person #16:
What medication were you prescribed for your UC first?
Prednisone or other Steroids
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 2nd?
Asacol or Asecol
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 3rd?
Other
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
No
If you have additional comments you would like to post about your medication experiences, or if there was a medication missing from the lists above, please write that below. Also, if you would like to share a story about your medication experiences, please write your story below and we could include it as a post on the site. Once there is enough input from other UC people, I will share the results via the site’s newsletter. You can join that at the top right of any page. Lastly, if you would like me to reply to you, please include your email, otherwise I won’t know who you are.
6-mp

Person #17:
What medication were you prescribed for your UC first?
Pentassa
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
No
What medication were you prescribed for your UC 2nd?
Colazal
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 3rd?
Prednisone or other Steroids
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 4th?
Lialda
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between

Person #18:
What medication were you prescribed for your UC first?
Pentassa
Did your 1st medication end your symptoms or at least have a big positive impact on helping you out?
Somewhere in between
What medication were you prescribed for your UC 2nd?
Prednisone or other Steroids
Did your 2nd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 3rd?
Other
Did your 3rd medication end your symptoms or at least have a big positive impact on helping you out?
Yes
What medication were you prescribed for your UC 4th?
Other
Did your 4th medication end your symptoms or at least have a big positive impact on helping you out?
Yes




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