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Which Drugs to Take and for How Long

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Ulcerative Colitis
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Posted 11/11/2010 3:56 PM (GMT 0)

Hi Everyone,

I've been lurking on this forum for a couple months.  Unfortunately, I'm a member of the UC club.

In July 2010 I was diagnosed with ulcerative proctitis up to 3 cm.  My only symptom was bleeding.  The doc put me on Canasa as needed.  It worked immediately, I'd take if for two or three days and the blood would clear up.  Then it would come back a week or two later and I'd take Canasa again for a few days.  This went on for a couple months.  In the meantime, I started having a slight numb/swollen tongue and I wasn't sure what was going on.  But it never seemed to last more than a day or two so I didn't think much of it.  Then one night before bed I took Canasa after being off it for a couple weeks.  I woke up in the morning with a swollen tongue and lips.  I thought it must be a reaction to the Canasa since I take no other drugs.  I called my GI doc and his assistant was totally rude and nasty to me, she claimed it couldn't be from the Canasa.  I talked to a pharmacist and was told it sounded like it was in fact a drug reaction.  So I called back the rude hag and insisted she talk to the doc and give me something else.  He prescribed cortenema so I called the nasty woman back and told her I'd rather have a suppository.  So the doc gave me a script for a six month supply of hydrocortisone supps.  I took those for a couple weeks and got no results.  So I started on vitamin e enemas and that helped but never totally cleared up the bleeding.

The couple times I've seen the doc he's been a jerk and after the nasty treatment from his assistant I decided to find another GI.  I made an appointment at our local teaching hospital.  This doc wanted me to go to an allergist to find out if I really am allergic to Canasa.  He said if I'm not, he wants me to take it daily for 8 weeks even if my symptoms clear up, he said it's wrong to prescribe it as needed.  After the 8 weeks he wants to put me on oral mesalamine for the rest of my life.  I have high deductible insurance so I decided not to pay to go to an allergist.  I talked to a pharmacist and he suggested I try it again during the day and make sure I have some benadryl on hand and someone around to call 911 if my tongue swells and affects my breathing.  So I cut a Canasa in half and stuck it up my butt.  I was fine, no reaction this time.

I can't afford Canasa (almost $500 for 30 supps) so I order Salofalk from Canada ($70 for 30 supps) but it takes two to three weeks to get them.  I finally got them yesterday.  So I plan on going back on Canasa but I have a few questions.  By the way, my only symptoms are blood and an occasional mucus ball.

- How long should I take the Canasa?  As needed?  For 8 weeks?
- If I take it for 8 weeks do I need to taper off or do I just quit after week 8?
- Will oral mesalamine be effective as a maintenance if my UP only goes up to 3 cm?
- If oral meds aren't a good choice for maintenance, any suggestions on what I should take and how often?

This forum is really great, I've learned a lot here.  Thanks for your help everyone.

    

Posted 11/11/2010 6:10 PM (GMT 0)
Sounds as if you need to find out if you're sensitive or allergic to the Canasa. Really, it's that cheap from Canada (I take it that you're in the US?) I have pretty good insurance but my co-pay for 30 Canasa is $120!

My experience is that inflammation anywhere in the colon, but especially in the rectum, takes a lot longer to really "heal" than we think. So, the Canasa stopped your bleeing in a few days.... but my guess is that the tissue would have taken another 3 weeks to really heal - or be on the way to healing. So.... my vote would be to go with taking them for 8 weeks.

I might be prone to tapering them at that point. A lot of us here, myself included, whose colitis goes throughout the colon, use the mesalamine enemas twice weekly as maintenance. Might there be benefit to doing that with Canasa.....?

Maybe someone with UP will chime in about oral meds. I was put on oral meds when I was first diagnose with UP, and.... it became pancolitis after several years. I didn't start rectal meds until after my UC was up the left side and into the transverse. Might some Canasa have helped prevent that....? Who knows!

Welcome to the forum! You are a rider.....(That's the imagine I envision, of jumping....)
:-)
Posted 11/12/2010 12:07 AM (GMT 0)
songlady - Yes, I'm in the U.S. and yes, Canasa really is that cheap from Canada (I get it from Universal Drug Store).  There's only one manufacturer of it so I think they're the same thing, just different names.  And yes, I ride horses!

Anyone else have any advice to offer?   

Posted 11/13/2010 3:41 PM (GMT 0)
I have UP and been taking canasa fo about 8 months straight with no luck. All i get is blood every morning not extreme urges to go to the bathroom like others. Im my eyes if the canasa doesn't fix the problem (stop the blood) then stop it which i did. I been off it for about a month and things are the same as before i started it. I am seeing a new GI in a few weeks.
Posted 11/13/2010 4:01 PM (GMT 0)
I have UC at rectum and sigmoid area.
When I was first diagnosed back to Oct 2008. Bloody stool is my only symptom. My GI told me to take Canase for 1 month, then switch to Asacol. I tried twice, as you can see from my signature, every time Canasa
stopped my blood in about a week and worked very well, But when I stopped Canasa and switched to Aascol, blood came again after around another 10 day!!
I think this may because the asacol can not reach my rectum effectively..

Then I changed my GI and he put me on rowasa enema every night. I was on rowasa for around 3 month every night and then slowly tapering to twice per week. I am in remission from Oct 2009 till now.
But today I saw some yellow jellish mucus on my stool........ Maybe not a good sign, thinking of doing enema 3 times a week to prevent possible flare.
I do not take oral medicine because I told my GI that I want to have a family next year. So he put my on enema only. I am also worry about the spreading of UC, so I may begin to take oral medicines when my wife gets pregnant.
but I;ll difinitely try lialda or other oral medicines but not asacol.

Hope this can help you a little bit.
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