Pentasa

November 16, 2009

I've been reading a lot of the archived posts here and have discovered that

apparently Pentasa has illegals in it. I take 4000 mg/day. So here I am being

rediculously anal about this diet only to find out I take illegals twice a day.

I'm thinking about quiting pentasa cold turkey but I promised my wife I'd stay

on my meds and I know my GI wouldn't support stopping. If I understand the

science behind the diet correctly it seems sort of pointless to continue unless

I'm willing to loose the pentasa. I know the pentasa isn't doing anything since

for the last month everytime I have a BM the toilet is full of little white

undisolved pentasa granuals. What to do?????

November 16, 2009

,

Elaine recommended taking whatever medication you need. She was not an MD and

did not suggest people stop taking meds on the diet. Some people have decided

along the way to stop medication. It is an individual choice, generally not

supported by MD's. Many people have also continued on medication on the diet,

and it has worked for them.

PJ

>

> I've been reading a lot of the archived posts here and have discovered that

apparently Pentasa has illegals in it. I take 4000 mg/day. So here I am being

rediculously anal about this diet only to find out I take illegals twice a day.

I'm thinking about quiting pentasa cold turkey but I promised my wife I'd stay

on my meds and I know my GI wouldn't support stopping. If I understand the

science behind the diet correctly it seems sort of pointless to continue unless

I'm willing to loose the pentasa. I know the pentasa isn't doing anything since

for the last month everytime I have a BM the toilet is full of little white

undisolved pentasa granuals. What to do?????

>

November 16, 2009

Elaine considered original azulfadine/sulfasalazine to be the most

effective for Crohn's/UC

because it has an antibacterial component within it. And some of the

newer

modifications of the drug, resulting in formulations like Pentasa,

were only promulgated to keep the drug on

copyright - and therefore actively making money. And they lost that

component,

and therefore the efficacy of the drug.

So I'd tell your doctor you want a prescription for good old fashioned

sulfasalazine/azulfadine instead

of pentasa.

http://kenya-portals.com/colitis/asacol-vs-azulfidine/

http://www.breakingtheviciouscycle.info/knowledge_base/kb/azulfidine_and_asacol.\

htm

http://en.wikipedia.org/wiki/Sulfasalazine

http://en.wikipedia.org/wiki/Mesalazine (Pentasa)

Also, you might want to check out LDN to use initially with

sulfasalazine and

then without it once your health progresses.

http://health.groups.yahoo.com/group/lowdosenaltrexone/

Mara

> I've been reading a lot of the archived posts here and have

> discovered that apparently Pentasa has illegals in it. I take 4000

> mg/day. So here I am being rediculously anal about this diet only to

> find out I take illegals twice a day. I'm thinking about quiting

> pentasa cold turkey but I promised my wife I'd stay on my meds and I

> know my GI wouldn't support stopping. If I understand the science

> behind the diet correctly it seems sort of pointless to continue

> unless I'm willing to loose the pentasa. I know the pentasa isn't

> doing anything since for the last month everytime I have a BM the

> toilet is full of little white undisolved pentasa granuals. What to

> do?????

>

> ------------------------------------

>

November 16, 2009

Azulfadine has sulfa in it. It's not as good as pentasa imho. It's a lot cheaper because it's not under patent. Some people have extreme reactions to it. You can have the active ingredient for Pentasa compounded if you have a pharmacy willing to do it and a doctor willing to write it that way.

SCD is a lifestyle change that can take a long time to get results. You shouldn't stop your meds until you no longer have symptoms and your doctor tells you it's ok to stop. You may not realize how much it helps until you stop.

The shells you see in the toilet are empty. The delivery system is different than Asacol (colon only), Pentasa covers stomach on down. I've been prescribed Pentasa since 2004. You should take a folic acid supplement with it according to ccfa.org.

You have to go sooo slow with everything or you'll keep finding yourself redoing the intro ;-). It may depend on where you start--how bad off you are but why take the chance.

Talk to your doctor and see if you can get it compounded instead of stopping cold turkey. It's worse than a prednisone taper if you are new to SCD and stop your meds all at once, at least in my experience.

Debbie 40 cd

scd 12/05 originally--working in new foods slowly

November 16, 2009

I took 16 pills of Pentasa a day for 3 years, pre-SCD. As far as

I could tell, they did nothing to improve symptoms of my CD. I read the drug

literature that comes with every gigantic bottle of Pentasa and it states that

only 30% of the drug gets absorbed. But what was not clear in the drug

literature was the condition of the colon in those studies, i.e., since my

colon was shot to h*ll, was I actually absorbing 30% of the dose I was taking? When

I told my doc the Pentasa was doing nothing for me and that I was stopping

taking it, his recommendation was to continue taking it and increase the dose

to 24 pills a day. I said no, thank you. I never did try any of the other ones

so can’t advise you.

Carol

CD 21 yrs SCD 5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of

I've been reading a lot of the archived posts

here and have discovered that apparently Pentasa has illegals in it. I take

4000 mg/day. So here I am being rediculously anal about this diet only to find

out I take illegals twice a day. I'm thinking about quiting pentasa cold turkey

but I promised my wife I'd stay on my meds and I know my GI wouldn't support

stopping. If I understand the science behind the diet correctly it seems sort

of pointless to continue unless I'm willing to loose the pentasa. I know the

pentasa isn't doing anything since for the last month everytime I have a BM the

toilet is full of little white undisolved pentasa granuals. What to do?????

November 16, 2009

I also took 16 (a total of 21 pills per day with the Pentasa) pre SCD. Now they make it 8 pills per day. The latest Gastro doc switched me to Asacol--I haven't opened it yet.

Until you hit a certain point, it does help even if you don't realize it. I just hope I never have to go on prednisone again. You could ask about the Sulfazine--some people do great on it but go slow.

If you don't follow doctors orders and get worse, don't get better, etc. they will say you are non-compliant ;-). That will cause you problems down the line.

Debbie 40 cd

scd originally 12/05

I took 16 pills of Pentasa a day for 3 years, pre-SCD. As far as I could tell, they did nothing to improve symptoms of my CD. I read the drug literature that comes with every gigantic bottle of Pentasa and it states that only 30% of the drug gets absorbed. But what was not clear in the drug literature was the condition of the colon in those studies, i.e., since my colon was shot to h*ll, was I actually absorbing 30% of the dose I was taking? When I told my doc the Pentasa was doing nothing for me and that I was stopping taking it, his recommendation was to continue taking it and increase the dose to 24 pills a day. I said no, thank you. I never did try any of the other ones so can’t advise you.

Carol

CD 21 yrs SCD 5 yrs

From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of

I've been reading a lot of the archived posts here and have discovered that apparently Pentasa has illegals in it. I take 4000 mg/day. So here I am being rediculously anal about this diet only to find out I take illegals twice a day. I'm thinking about quiting pentasa cold turkey but I promised my wife I'd stay on my meds and I know my GI wouldn't support stopping. If I understand the science behind the diet correctly it seems sort of pointless to continue unless I'm willing to loose the pentasa. I know the pentasa isn't doing anything since for the last month everytime I have a BM the toilet is full of little white undisolved pentasa granuals. What to do?????

November 16, 2009

I think the reason I was prescribed Pentasa is because I have an

allergic reaction to sulfa drugs. So perhaps Pentasa was my only choice. The CD

symptoms just got worse and worse until I found the SCD. Probably the pred.

& Pentasa cocktail kept me alive until I stumbled upon the SCD! So for that

I am grateful!

Carol

CD 21 yrs SCD 5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Tex

Debl

Until you hit a certain point, it does help even if you don't

realize it. I just hope I never have to go on prednisone again. You

could ask about the Sulfazine--some people do great on it but go slow.

November 16, 2009

> I took 16 pills of Pentasa a day for 3 years, pre-SCD. As far as I could> tell, they did nothing to improve symptoms of my CD. I read the drug> literature that comes with every gigantic bottle of Pentasa and it states> that only 30% of the drug gets absorbed. But what was not clear in the > drug> literature was the condition of the colon in those studies, i.e., since > my> colon was shot to h*ll, was I actually absorbing 30% of the dose I was> taking? When I told my doc the Pentasa was doing nothing for me and that > I> was stopping taking it, his recommendation was to continue taking it and> increase the dose to 24 pills a day. I said no, thank you. I never did > try> any of the other ones so can't advise you.>> Carol>> CD 21 yrs SCD 5 yrs>Pentasa did nothing for by Crohn's either, and it's mightly expensive.n

November 16, 2009

I can only speak to my experience and I'm a bit of a rebel. I was on the

diet for a about 6 months and my only remaining symptom was a small about of

blood - regular, formed stools though, no mucus, etc. I read that lactose was a

filler in my Asacol and decided to experiment. I was down to 4 pills a day

anyway so I stopped them, figuring if things got worse I'd go back on them

quickly and probably be fine - I knew I was taking a risk, though. My bleeding

stopped within 3 days and I've been symptom free since (aside from symptoms

telling me I've gotten too advanced with foods, like too many nuts in one day,

for example. These clear up when I stop eating the offending food and do not

progress into a flare).

I have to admit that I did not consult my doc until the next month when I had an

appt with him. He then prescribed Lialda for me, which I have yet to fill and

take. This is my own personal choice, given my specific disease history (I've

only had the one major flare in 2008 and felt that significant healing had

occurred).

We are to take medications if we need them - regardless of illegals (in fact, I

take certain OTC drugs as needed without issue). Seeing as you are on a high

dose, perhaps tapering down slowly will help you to experiment in a less drastic

way, if you so choose.

UC since 2005

SCD since Nov 08