Visit the Microscopic Colitis Foundation Website
When reseaching Imuran, I found this on a forum:
"So sorry you have the poop-a-doops! Yikes, what you are going through is hard enough without worrying about a Moment of Looseness!"
I think I found Natty there, too.
5 ASAs
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
5 ASAs
I never tried any 5 ASAs. I think I might like to try one of those (w/o lactose) before I think about taking Imuran. Do you think I could propose that to my GI? She did offer one of them or Entocort when I was first diagnosed.
When reseaching Imuran, I found this on a forum:
"So sorry you have the poop-a-doops! Yikes, what you are going through is hard enough without worrying about a Moment of Looseness!"
I think I found Natty there, too.
When reseaching Imuran, I found this on a forum:
"So sorry you have the poop-a-doops! Yikes, what you are going through is hard enough without worrying about a Moment of Looseness!"
I think I found Natty there, too.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Joan,
I was on Lialda (one of the 5ASA drugs), and did pretty good for a while. The problem I had was that I did not know about the "diet". After 8 weeks and still eating gluten here and there, I relapsed completely. I then ended up on entocort, found this board, completely fixed my diet....and I am doing well.
I would bet that had I been eating GF DF SF EF, it would have worked. If I relapse again, that would be the drug I would try first. No side effects, which was a relief. Entocort was very difficult for me, but it did the trick, and I am grateful.
It couldn't hurt to try 5ASA drug, and doctors tend to like prescribing drugs. Let us know what you decide.
Lori
I was on Lialda (one of the 5ASA drugs), and did pretty good for a while. The problem I had was that I did not know about the "diet". After 8 weeks and still eating gluten here and there, I relapsed completely. I then ended up on entocort, found this board, completely fixed my diet....and I am doing well.
I would bet that had I been eating GF DF SF EF, it would have worked. If I relapse again, that would be the drug I would try first. No side effects, which was a relief. Entocort was very difficult for me, but it did the trick, and I am grateful.
It couldn't hurt to try 5ASA drug, and doctors tend to like prescribing drugs. Let us know what you decide.
Lori
I'll be very interested in your experience with the 5ASA drug if you decide to try it.
The cost difference would be considerable if I switched to Pentasa. It is a tier 4 medication, which, at a cost of $85-95 per month, is cheaper than $930 for a 3-month supply of Budesonide, a tier 5 medication.
The unknown for Pentasa is the dosage I would need to achieve remission. I'm presently able to achieve stability with 3 mg. of Entocort per day, but am also a diet which is too deficient in nutrients for long-term maintenance. Resolving my MC without medications no longer seems attainable, but I'm not sure if Entocort should be used for this long.
My other concern is whether Pentasa is a sulfa drug. I'm highly allergic to sulfa drugs. I broke out in a rash and and I had difficulty breathing after my second round with Bactrim. It sounds like Pentasa isn't a sulfa drug after reading Tex's explanation below, but I'm not positive. Maybe he'll clarify it for me/us.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12360
I see my GI at the end of the month and I think I'll discuss a 5ASA drug with him, too.
Gloria
The cost difference would be considerable if I switched to Pentasa. It is a tier 4 medication, which, at a cost of $85-95 per month, is cheaper than $930 for a 3-month supply of Budesonide, a tier 5 medication.
The unknown for Pentasa is the dosage I would need to achieve remission. I'm presently able to achieve stability with 3 mg. of Entocort per day, but am also a diet which is too deficient in nutrients for long-term maintenance. Resolving my MC without medications no longer seems attainable, but I'm not sure if Entocort should be used for this long.
My other concern is whether Pentasa is a sulfa drug. I'm highly allergic to sulfa drugs. I broke out in a rash and and I had difficulty breathing after my second round with Bactrim. It sounds like Pentasa isn't a sulfa drug after reading Tex's explanation below, but I'm not positive. Maybe he'll clarify it for me/us.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12360
I see my GI at the end of the month and I think I'll discuss a 5ASA drug with him, too.
Gloria
You never know what you can do until you have to do it.
Hi Gloria,
Pentasa shouldn't carry any sulfa drug risks. Here's some background information on the sulfa issues with sulfasalazine (Azulfidine), and how the problem was resolved with the development of mesalamine:
Is Mesalamine Safe?
You may find the article at the following link to be helpful, also:
Tex
Pentasa shouldn't carry any sulfa drug risks. Here's some background information on the sulfa issues with sulfasalazine (Azulfidine), and how the problem was resolved with the development of mesalamine:
Is Mesalamine Safe?
You may find the article at the following link to be helpful, also:
All About Pentasa ( mesalamine )Since it lacks the sulfa-like properties of Azulfidine, most patients intolerant or allergic to Azulfidine and other sulfa drugs can be safely treated with Pentasa.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Yeah, exactly why is that the case? Those ingredients are obviously better suited for the cleanout solutions used to prep patients before a colonoscopy exam. Are drug manufacturers totally devoid of brains? Is no one at the FDA capable of reading labels and making logical judgments? Pharmacology leaves a hell of a lot to be desired.Joan wrote:No lactose but caster oil (laxative)!
Some of the others have polyethylene glycol.....yum.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for the information, Tex.
Joan, those ingredients are disturbing. I don't think we can rely on our GIs to be educated about the drug. They will only tell us what the pharmacy reps tell them, and you know how impartial the reps are.
I expect that my GI will again try to convince me to have a colonoscopy so he can "go fishing." If I submit to another colonoscopy, it will be with a GI that knows what he/she is looking for, mainly mast cells. And I don't need a colonoscopy to tell me I have a mast cell problem.
So is it better to stay on Budesonide for years, which on the surface hasn't caused me any problems, or experiment with a different drug, which may? I'm going to get a DEXA scan order from my PCP in November, which should tell me whether the strontium I've been taking for 2 years has helped my osteoporosis. That will help me decide about the Budesonide.
Gloria
Joan, those ingredients are disturbing. I don't think we can rely on our GIs to be educated about the drug. They will only tell us what the pharmacy reps tell them, and you know how impartial the reps are.
I expect that my GI will again try to convince me to have a colonoscopy so he can "go fishing." If I submit to another colonoscopy, it will be with a GI that knows what he/she is looking for, mainly mast cells. And I don't need a colonoscopy to tell me I have a mast cell problem.
So is it better to stay on Budesonide for years, which on the surface hasn't caused me any problems, or experiment with a different drug, which may? I'm going to get a DEXA scan order from my PCP in November, which should tell me whether the strontium I've been taking for 2 years has helped my osteoporosis. That will help me decide about the Budesonide.
Gloria
You never know what you can do until you have to do it.
I got my dx over five years ago. I am sure my GI said colonoscopy in 5 years but she keeps telling me not until 2014. I'd like a stain for mast cells. I'm really quite surprised she wants to wait.
I'm canceling/postponing the consult in B'ham and going to ask for a 5ASA first. Do I need to taper the Entocort since I have been on it since Aug. 23 which is about 8 weeks. Appointment to see her Nov. 7th. I want to know if she personally knows either of the doctors she recommended.
I am darn tired of talking to her through her staff.
I'm canceling/postponing the consult in B'ham and going to ask for a 5ASA first. Do I need to taper the Entocort since I have been on it since Aug. 23 which is about 8 weeks. Appointment to see her Nov. 7th. I want to know if she personally knows either of the doctors she recommended.
I am darn tired of talking to her through her staff.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
That's a good question and I'm wondering the same thing. I'm on a 3 mg. dosage, but the difference between 3 mg. and none is still huge for me.Joan wrote:Do I need to taper the Entocort since I have been on it since Aug. 23 which is about 8 weeks.
Gloria
You never know what you can do until you have to do it.
Theoretically, no. But in the real world, it never hurts to play it safe.Joan wrote:Do I need to taper the Entocort since I have been on it since Aug. 23 which is about 8 weeks.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
When I first wrote on this thread 10/12/13 things were fine, but tentative. It fell apart shortly thereafter, even while I was very carefully eating. I guess I had not had enough healing time in yet. On 10/21/13 I started back on Lialda and I am feeling good. I think the 5ASA's work differently for me than entocort. And, most importantly, I do not have side effects, like I did while taking entocort. I would like to stop taking them one day, but for now I am happy to enjoy the holidays without shaking things up. 
Lori
Lori
The 5-ASAs don't work for everyone, but when they do, they have the advantage of not messing with your adrenals or your immune system, so the risk of serious side effects is much lower, especially with long-term use.
They might be comparable to a bullet rather than a bomb, but a bullet will kill a victim just as dead as a nuclear-bomb, any day of the week.
Tex
They might be comparable to a bullet rather than a bomb, but a bullet will kill a victim just as dead as a nuclear-bomb, any day of the week.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.