My wife has just been diagnosed (Asacol, Canasa, etc.)

Hello all,

This is my first post to the forum. My wife (21) has just been diagnosed with UC 1-24-2013. Her symptoms started around October 2012. The only symptoms she has ever experienced is blood in her stools. That was the only thing that made us go to the doctor was when it did not clear up after a month.

Eventually she made it to the gastroenterologist. She had her colonoscopy a few weeks ago and her biopsy came back confirming she had UC. So, we are completely new to this. The colonoscopy revealed some (splotches, small red dots) in the signoid colon. This is where the worst of it is. Compared to what the images I have seen online look like, her UC looks very mild. There was also another spot found in the secum. This was a very small splotch. But the doctor said it can spread and become a lot worse.

Following the colonoscopy, the doctor wanted her to go ahead and start taking Canasa (suppository). She had a 30 day 1gm prescription. After 6 days of taking the suppository, she is back to normal stools, no blood. (is this considered remission?) She has continued to take her Canasa and has about eight more pills.

We went back to the doctor yesterday and she wants her to start on Asacol 800mg 3 times a day.
She said if she has not had any flare ups in a few months they will take her down to 2 pills twice a day.

As of right now she still has never experienced any symptom except the bloody stools and since the sixth day of Canasa this is gone as well.

From what I can tell (and what my pharmacist told me) there is not a generice version of this on the market. Do any of you know if there is, and if so, have you used it?

Also, have any of you ever had luck ordering prescriptions from Canada? it seems to be vastly cheaper there.

Thank you for the help.

Same experience as your wife, I'm 24. Recently diagnosed (22nd of Jan). I am encouraged the Canasa worked for her but why did the doc prescribe Asacol? If it's mild I don't see why increase in Rx?

I'm a bad patient - decided not to follow doc's orders. I'm sticking to my SCD diet because I can't afford these meds and feel they only solve symptoms versus the problem. However, yes, it is cheaper in Canada. From my experience, there is no generic vsn of the suppositories but doc implied there is one of Asacol. Asked for a second opinion yet?

Sorry your wife has this yucky disease. Please look at the sticky at the top of our forum. It has different links to prescription assistance programs that may help you.

Katherine-the canasa treats the rectum. The original posters wife has inflammation further up hence the asacol.

I am a little confused that since your wife's case was fairly mild and they just gave her Canasa only and no Asacol and then when she got better and went into remission they want her to do Asacol only and no Canasa. That seems to lack logic in my book. I'm a big believer in, "If it ain't broke, don't fix it." I do believe she should do some form of maintanence drug forever to avoid future flareups as future flareups often get harder and harder to treat, so the main goal is to never have another flareup. But, if I were the doc and Canasa only all by itself put her into remission, then I would stick with what worked and have her do a Canasa maybe once or twice a week for the rest of her life.

Thank you all for the replies.

I just got off the phone with her doctor's office. I spoke with a nurse who said she would ask the P.A. about any other prescriptions that might be slightly cheaper.

With our current insurance, the Asacol is $158 for 90, 800mg pills. I looked on canadadrugs.com and found 180, 800mg pills for 240, so that would save around $40.00 dollars per month.

Have any of you used mesalamine? I have read some about it. From what I am understanding, with her experiencing zero side effects after taking canasa, she is in a state of remission. The goal now being to keep her in remission as long as possible. Therefor needing to find a "maintenance" drug.

What are other maintenance drugs y'all are using?

Thanks,

Joseph

Joseph,

I had the exact same symptoms as your wife at the exact same age. I went on Asacol (400 mg 3x per day) and my remission started almost as quickly as hers. I'm willing to bet the additional use of Canasa sped it up even quicker.

I found myself at a point, less than a year into my diagnosis, where I was completely symptom free and actually started forgetting to take my meds (this was about 10 months - year after being told I had Colitis). I met with my GI doctor a few months after this and was told that my remission might be permanent and while there is no "cure," I may never experience another flare.

For the next 2-3 years, he was right. I felt no symptoms and went back to my "normal" life of eating whatever I want and never worrying about urgency or painful/bloody BMs. But then it came back. After a few months of wishing and hoping, I submitted and went to see a GI doctor again so I could get back on the Asacol. I did, and remission started right back up like it had before. The only difference between this remission and the first are IBS symptoms popping up often.

So my advice for you and your wife would be to stick with the 5-ASA (mesalamine medicines) as long as they're doing the job and helping her feel better. Do not discontinue them ever. I can't help but wonder how my health might have turned out if I didn't discontinue the Asacol for those 2-3 years even though I felt fine. This is a chronic disease and it is always better to err on the side of caution. The medications she's taking right now do not cause any serious or even noticeable side effects, so there's no harm in taking them while feeling fine. If her symptoms are as similar to mine as they seem to be, I would guess that daily, religious consumption of Mesalamines will keep her UC under control and/or in remission.

I wish I could help you figure out the financial aspect of all this, but unfortunately we live in a country where pharmaceutical companies are more concerned with profits than health and a government that is all too willing to comply with them.

Yes, I take balsalazide as the generic for colazal. It has worked fine for me.

I really don't understand why, with Canasa putting her into remission all by itself, that they want to use a different med for maintanence. If I were the doc I would have her do Canasa periodically as the maintanence med, even if it is just once per week or even twice per month. That's what worked, so why wouldn't they want to just stick with what worked? I'm scratching my head on this one.

Colazal didn't work well for me. I think since she has inflammation at the cecum, she may need to use Lialda or Asacol but Colazal may be worth a try since it's affordable with your insurance. I've ordered generic mesalamine from Canada (Asacol equivalent) and I've had good luck. I've also ordered Sallofalk suppositories from Canada -it's way less expensive than paying US prices.

Thank y'all for all the help. The inflammation at the cecum was very small. However, the Doc said the same thing as a lot of you, take the oral in order to try and keep it from spreading. I think we are going to try Colazal (generic version) and see what that does. I might ask the doctor about Rowasa as well just to have incase.

For those of you who (kazbern) use the oral and only the enema "as needed" do you just take this if you see blood in your stool or one ever two weeks? Basically what is your definition of "as needed"?

ihavequestions, it took me a looooong time to get rid of the rectal inflammation. Like years. I wasn't very good at using it daily, and so for a long time I did it every other night, or maybe every two nights. I got diagnosed a year after the birth of my 1st child and then got pg with my 2nd child a couple of months later, so most of those early years are lost to my memories, LOL.

I got scoped around 2008 and still had rectal inflammation so I got back on the enemas and kept them up for a few months.

I had a terrible flare in 2009/10 but it did not involve my rectum for some reason. I used an enema once this past summer - don't really recall why - but at my scope in October 2012 there was no inflammation anywhere. My GI was really excited, LOL.

"As needed" to me means seeing mucous and/or blood. And if I were to see blood, I would know that one enema is not the answer. More like 1 month of enemas.

ihavequestions said...
Kazbern and SFC - thank you for your responses.

Have any of you used Colazal?

I just got off the phone with the doctor. The three options they gave us were Asacol, Colazal, and Lialda.

Asacol with out insurance is 160 per month. Lialda is sky high and Colazal is not covered and costs 140 per month. These prices reflect 3 pills per day for 30 days.

My insurance company (BCBS) told me Colazal has a generic (Balsalazide Disodium) this medicine would only cost 22 per month with insurance and the the first month is free.

Have any of you used this generic Balsalazide Disodium or have any thoughts?


So far she has not taken anything but the Canasa sup. and it cleared her up after 6 days of taking it. She has another 8 or 9 sups. left.

Thank y'all!!!

Joseph

I have only ever taken Asacol or Asacol HD to treat my UC symptoms. I tried Apriso at first, but found that I was still having mild D with that.

It sounds like her symptoms are somewhat identical to mine. I've never used rectal meds (to the chagrin of many here), and have not experienced any issues aside from recurrent IBS, which I can handle with OTC remedies like Pepto, Tums, Miralax, etc.

I am new to this site, but noticed that quite a few individuals wanted to know if you could get canasa from a Canadian pharmacy. I have to take this medication as well and it is expensive. Talked to a few people and found a pharmacy in British Columbia. I actually put in an order for 3 month supply. That came to $203.13. Plus mailing and handling of $9.99. Major league savings in the amount of $1,600. Was I ever happy. I believe you will find them online at NorthWest pharmacy.