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03-10-2014, 07:47 AM   #1
dave13
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Pentasa

My GI wants me on pentasa.He feels it will help me stay in remission.I was diagnosed 11-13 and had a resection.I read stories of crohnies going med free and doing well.I read stories of pentasa working wonders.I recently found a source that makes pentasa affordable for me.I initially was floored to find it would cost me $97 a week.This would be my co-pay!This new source is $23 a week,from Canada.My GI is fine with this source.

I want to do what will keep me in remission.I'm not sure what stage of remission I am in.I'm just happy to be told I am currently in remission and I want to stay here.It's going on four months since my resection.I seem to have a handle on my food,what I can and can't eat(so far). I'm using diet and exercise as tools to fight CD.I read crohnies have been in remission for years on pentasa and than have a flare or it stops working.Would remission have been shorter if not for the 5-asa? Would it have been the same? I know we are all different with individual needs. I'm unsure of what to do.

I pretty much gave up on fighting this with meds because there was no way I could scrape together $97 a week.I would do it with diet and exercise alone because it was my only option. Now I have a more affordable source,the med option is open to me again.What if that closes up too? Can you start pentasa and abruptly stop it? What would that do to my body?

I would appreciate any input.I need to make a decision and follow it.S**t or get off the pot,so to speak.A good IBD metaphor for my situation.

Thanks
03-12-2014, 10:59 PM   #2
fozheart
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I was wondering if you had resolved the med issue, and here you are! I am glad you and the doc found an affordable drug. Sorry that I do not know anything about Pentasa, (just a steroid girl), but I am praying that it keeps you in remission. Wait a minute.... are you Military/Armed Forces? I would think that would be your ticket to getting it for free, or at least cheap?

You sure have done your homework, and have very valid questions!
03-12-2014, 11:41 PM   #3
vivaelbirdo
 
Join Date: Mar 2014
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I was on Pentasa when I was first diagnosed. I was on it for about 3 months, then went into remission for 7 years...subsequently, my new Doc thought the doc that diagnosed me was nuts, that I had just had a viral infection or something, and took me off it(turns out he was wrong!). I had zero side effects after being taken off it.

Pentasa is really one of the lightweights as far as IBD medications go, so I wouldn't worry too terribly about any withdrawal effects from it (I would worry about what not taking needed medication is doing to your body though).
03-13-2014, 07:54 AM   #4
dave13
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I was on Pentasa when I was first diagnosed. I was on it for about 3 months, then went into remission for 7 years...subsequently, my new Doc thought the doc that diagnosed me was nuts, that I had just had a viral infection or something, and took me off it(turns out he was wrong!). I had zero side effects after being taken off it.

Pentasa is really one of the lightweights as far as IBD medications go, so I wouldn't worry too terribly about any withdrawal effects from it (I would worry about what not taking needed medication is doing to your body though).
I'm not on pentasa yet.I do worry about what's happening the longer I go without it.I hope to be on it soon.

Hi Fozheart,I wasn't in the military.Now I have been back to work for a little while I should be able to start pentasa soon,though.Thanks for the good thoughts!I'll keep you updated.Hopefully it will be soon.I don't want any more strictures.I'm sad that it's money that is keeping me from meds I need,there so needlessly expensive.I won't give up.
03-13-2014, 09:20 AM   #5
lbligh
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My husband calls the Pentasa "a $6,000 a year placebo." Our daughter is on Pentasa and we are skeptical that it does anything. But we are afraid to take her off it. I have read that it is more effective for UC than for Crohn's.
03-13-2014, 08:16 PM   #6
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I'm new here but was on Pentasa along with imuran and bentyl and was pain free and very happy. My insurance company decided not to cover Pentasa at all and paying out of pocket is not happening - it was over $900 a month. For me the Pentasa worked wonderfully and if I can ever find a way to afford it I'll go back. I also had no side effects with the Pentasa. Hope it works well for you too
04-01-2014, 01:35 PM   #7
dave13
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I just thought I would post an update.I have been taking 500mg twice a day for 12 days.I definitely feel better.I would say I felt a significant difference within three days.

I was skeptical...was I really feeling better because of the pentasa?I have to say yes.It was the only change I made in my diet/lifestyle.

My appetite is back,my bowels seem to have settled down,I have more energy and just a general sense of feeling better.My diet has been the same as before pentasa.I was going to the gym before as well.

I forgot what it was like to feel so well.I know CD can knock me down tomorrow but...today I feel good and I will enjoy it.

I'm thankful pentasa helps me...I'd be more thankful if it meds would help everybody.I get so frustrated how CD may be kept in check for some,but not others.Even if each crohnie is affected in the same area in the same way with the same degree...moderate,sever,etc.The response to a medication will most likely vary quite a bit.

anyways...before I really go on a rant...thanks for the support!

Dave
04-01-2014, 01:50 PM   #8
Essieluv
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I am so happy for you Dave, that really is great news!
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Meds that failed me: Remicade, Humira, Cimzia, Entocort.

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04-01-2014, 05:18 PM   #9
fozheart
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Yay, Dave!
04-01-2014, 05:28 PM   #10
fozheart
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Sorry- I did not mean to post right away. What a blessing that the Pentasa is working for you, and that is so cool that you felt it just within 3 days! What a great way to start your Spring- with an appetite, energy, and bowels that are behaving. My fingers are crossed that this medicine continues to work well for you!
05-11-2014, 03:36 PM   #11
goodolboydws
 
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I just thought I would post an update.I have been taking 500mg twice a day for 12 days.I definitely feel better.I would say I felt a significant difference within three days.

I was skeptical...was I really feeling better because of the pentasa?I have to say yes.It was the only change I made in my diet/lifestyle.

My appetite is back,my bowels seem to have settled down,I have more energy and just a general sense of feeling better.My diet has been the same as before pentasa.I was going to the gym before as well.

I forgot what it was like to feel so well.I know CD can knock me down tomorrow but...today I feel good and I will enjoy it.

I'm thankful pentasa helps me...I'd be more thankful if it meds would help everybody.I get so frustrated how CD may be kept in check for some,but not others.Even if each crohnie is affected in the same area in the same way with the same degree...moderate,sever,etc.The response to a medication will most likely vary quite a bit.

anyways...before I really go on a rant...thanks for the support!

Dave
If you are seeing that much of a difference at 500mg 2x daily, you're doing VERY well at a level that's considerably under the average dosage, at least from the literature and package inserts that I've read and what my GE says, with 4,000mg/day being the "most common recommended dose" . Congratulations.

Some studies seem to show equivocal results for Pentasa, especially when used long term, but if it's working for you, I'd recommend sticking with it, taken at as low a dose as gives you the results you seek.

I too was floored when I heard what it would cost per month, but our pharmacy is really on the ball and they told me about the limited reduced price/no price program from the domestic manufacturer/packager of Pentasa. It depends on household income, but it's possible for some people to get 3 months worth of the drug at a time from them for free-or at a much reduced price, and qualified for a year of the drug following approval of the original application.

By way of comparison, I had a resection at 14 and started on Pentasa last year (age 60) during the waning of a flare-as the first Crohn's-specific medication I've ever had to take after that surgery. I was started at the full 4000mg/day dose and contiued at that level for about 4-5 months before the GE thought it time to step down to 2,000mg/day. Started seeing more occult blood again at that level when solid stool was present and went back up to 3,000mg/day for a couple months, then down to 2500 and now at 2,000 again.

Diet monitoring is always a good tool for helping to narrow down or track what foods might be a problem for you specifically, as we're all different in that regard. Eliminating all NSAID usage is a common step to reduce the possible number of "significant irritants/causes/triggers for bleeding"-one that's sometimes overlooked.

I take several drugs for different conditions (depression/T2DM, hypothyroidism/DVT), plus calcium and other supplements as well as daily eating foods that can strongly impact iron absorption in particular, so I track interactions pretty carefully on DRUGS.COM Calcium (in dairy products from milk to cheese), and tannins (in tea) are among the more common iron blocking dietary substances many of us do not avoid. However, the most recent change was starting XARELTO late last year and that is a known suspect for increasing any intestinal bleeding that almost certatnly had already been taking place. And that is equally likely to have been what led to a gradual drop in my iron stores.

So, take my experience as a cautionary example.
If you're not already being monitored AT LEAST EVERY 6 MONTHS with a CBC or similar bloodwork and that INCLUDES possible inadequate B12& folate and iron levels-as those those are quite capable of causing a gradually developing iron deficiency/anemia, it would be smart to put those on your list. Depending on what particular section/s was/were removed and how much length is left, absorption of these can be affected-ranging from practically no impact to being dramatically different than how well your gut had been functioning previous to the surgery. In my case I was anemic going into the surgery and for a short time afterwards.

More recently, my once again dropping iron level was confirmed a full year after starting Pentasa although the symptoms in hindsight had been present for at least 6 months. (For reference, a number of symptoms are shared between low iron anemia stemming from IBD and untreated or UNDER-treated hypothyroidism-my thyroid medication had been increased earlier in that same 6 month period).

Having HAD a bowel resection recently, it should not be too difficult in YOUR case to get your PCP or GE to consider these as being "medically necessary" for you during at least the first year or 2 afterwards.
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