Newly Diagnosed CD - Pentasa

[rbp3072]

Hey Everyone. Looks like some good info here. Glad to be a part of the board, (well, if you can be glad to have to be here..hehe). After years of bowel trouble, a new GI doc finally started to be a little more agressive in testing. Trying to make a long story short, Colonoscopy short irritation in upper bowel, but xray series came back good, as well as initial bloodwork. She then sent off that really expensive blood test to Calif., and it apparently said I have the marker for Crohn's.
She feels that even though the majority of physical tests were normal, the combo of irritation, the marker, and my symptoms, (primarily dirrahrea 3-7 x daily, bloating/pain, and random bleeding), are enough for her to consider a good possibility I do have CD. (Even though she wouldn't say for sure).

Sooooo, she has given me Pentasa 500mg, wanting to take 2 twice daily for a few days, then get up to "a normal dose" of 2 four x daily. She did not believe that I needed to be placed on steroids. I go back to see her in 6 weeks.

Since I've only been on it for a couple of days, I'm still waiting to see any improvement, (which I expect will take a while), as well as side effects. I am having to make trips to the restroom, but I'm hoping it's just my body getting used to it in the first few days). Nothing was listed about flushing though? Today on the way to work, about 630pm, I started burning up. Lasted for a couple hours. (Co-workers wanted to have EMS look at me...lol). Is this normal reaction?

For reference, other drugs :

Niacin ER (for Cholesteral) - 500mg x1 daily - causes flushing, but I take in mornings before I go to sleep
Veralan PM (Blood Pressure) - 200mg x1 daily
Nexium (GERD) - 40mg x1 daily
Topamax (Migraines) - 50mg x3 Daily

Any one have any insight that wanna share w/a newcomer? Anything I should expect/hope of the Pentasa? And if it doesn't do anything, what I might expect from my GI?

Thanks again folks. I look forward to swapping stories and having a place to vent at times.

 

[Shane]

Pentasa

Hi, I personally feel that in my case the Pentasa doesn't seem to make alot of difference. Been on 1000mg 2x daily for seven months along side Prednisolone (upto 40mg daily then reducing by 5mg every seven days). When I come off the Prednisolone I get really ill again. Spent a week trying just Pentasa at 2000mg 2x daily and it didn't help at all. Don't feel as though I get any side effects from Pentasa though.

Hope that is of some use. Best of luck.

Shane.

 

[Kev]

Hey Shane.. Welcome to the forum. If I've already said hi before, just chaulk this off to brain fart.
I've been on Salofalk (just another form of 5 ASA, the family Pentasa falls into, in fact, if you translate it, pentasa = 5ASA) for a couple of years now. I take 4g a day.. Originally, I was taking 2 500mg tablets 4 times a day, but I developed migraines late at nite. I took these as directed by a pharmacist, with meals. But the Dr Falk website suggested I take them 1 hr after eating. Switched, and I stopped getting migraines. That's the only side effect I've ever noticed. The 5 ASA family is more or less just a 5 times stronger aspirin with a coating designed to get it past the stomach into the gastrointestinal system. It's purpose is to reduce inflamation, swelling and localized pain. It isn't a treatment for the disease per se, it just alleviates the symptoms of it. Bear in mind that this is just my untrained opinion, I am not medically trained or qualified... just another IBD sufferer who is sharing their rudimentary info. As for what your GI may do next, that pretty much depends on how your IBD responds, progresses, and to what extent the symptoms impact your life. The disease is so different, treatment pretty much has to be custom tailored case by case.

 

[mle]

From what I've heard from my doc is that Pentasa is more of a maintainance drug and shouldn't be relied on to put you in remission if you've been experiencing bad symptoms. I've been on 4g a day for about 6 months and honestly I haven't noticed any real difference one way or another....however, I wasn't experiencing any bad symptoms to begin with even though they saw active inflamation and ulcerations but I guess they were mild at the time. At this point though I think it's definitely worth taking if it's going to help me stay in remission. I'm also on mercaptopurine (6mp) and I think that's the drug that really helped to nip the Crohn's activity in the bud. Everyone is different though but don't wait too long if you're still suffering in a couple of weeks. I hope you're feeling better soon!

 

[Mazen]

I've been on Pentasa for 7 years now. No side effects.During those years I had ups and downs, took prednisone a few times, and now also taking Imuran. Don't know if it's doing anything but my doctor keeps me on it for maintenance, and says I may have to take it all my life.......

 

[Shoeless]

I took Pentasa for years no side effects. I took 5 pills 3 times a day. I eventually had to move to 6MP, done ok with that so far.

 

[Trsora1]

i am on 6 pentasa a day, 12mg of sol medrol and humaria injections. I get really sick every time i try to come off steriods end up in hospital 5 times already this year. So far for the past 2 monhts i have felt good. Good enouch to eat italian beef, and all kinds of stuff i havent been able to eat in i cant tell you how long.

 

[MarkyB]

I've had a similar experience to Mazen. Been taking 1000mg x2 daily for over 10 years now. (NO side effects) I don't think it makes any difference to the Crohn's. When I flare I have to take Prednisolone and now I am also on Imuran (shortly to also have Infliximab). But was always told that Pentasa is used for long term maintenance....

 

[Kev]

Hmmm, seems to be a wide range of daily dosages. Assuming, despite variety of brand names AND the nature of the enteric (sp?) coatings that the 5-ASA base product is pretty much consistent in potency (yea, a big ol assumption).
Let's assume that a 500 mg pill in the 5 ASA family is equally potent as others with differing names.. (i.e. Pentasa, Asacol, Salofalk).. then it begs question why some are on 2 grams (i.e. 4 X 500mg or 2 X 1000mg) while others take 4 grams..(8 x 500mg or 4 x 1000mg).. Anyone any ideas? Or, better still, hard and fast info on the discrepancy in dosages? Body weight? Extent of disease? Location of the inflammation? Any or all of the above?

 

[Mazen]

I take 3 grams (500 x 6). I read on the leaflet that for Crohn's you can take up to 4g per day. Don't know how the doctors determine the dose????

 

[Kev]

Hey Mazen. Thanks for posting. So, if you hadn't noticed any benefits at 3gr, I wonder if your doc would increase the dosage? Have you improved on 5ASA?

 

[Mazen]

Hi Kev. I have no idea, as it seems I'm OK for a while then suddenly I flare; I've had 4 major flares since I was diagnosed with Crohn's Oct 2000(all while taking Pentasa) and had to take Prednisone and antibiotics each time. So I don't know if the Pentasa is doing anything, but the doc insists that I should always take it.

I asked my doctor about uping the dose of Pentasa to 4g, but he said it will not make any difference!!!

 

[rbp3072]

Thanks for all the info folks. Sorry I haven't posted. Been kinda hectic at work and all.
Interesting point Kev brings up about so many ppl being on different dosages of the ASA's. Course, I suppose it's like any other med, trial and error. But w/what seems like no obvious benefit, (at least on the surface), how can the Dr's judge what to give? Hmmmm..

Anyway, after 6 weeks on the Pentasa, no changes. Still having the 'D', mild gas, as well as occasional bleeding. So, she decided to start me off on Prednisone. Will be doing 40mg x1 week, then 30mg x1 week, 20mg x1 week, and finally 10mg x2 weeks. I go back and see her in a month, (so while I'm jsut about finished w/the 10mg), and see what happens. (Staying on the Pentasa during the Pred.).

Guess it's time to keep a journal, again. Sigh...lol (Which, btw Kev, thanks for doing your online journal. I'm sure it's helped many anxious newbs like me in starting their 'adventures'...lol

 

[Kev]

Hey rbp3072.. Thanks for the kind words. If it helps anyone out there, newbie or otherwise, then it was well worth it. Found it personally beneficial too, as it literally gave me something to do that took me out of myself, so to speak. I think we all get so wrapped up in ourselves and this disease, that we begin to lose perspective. Writing or re-reading those posts help me put me back into perspective, if that makes any sense. to anyone considering doing similar, I heartily recommend it as theraputic. (sp)

As for the whole 5-ASA thing, I presume it's intend to work along the lines of putting Anbesol (or similar) on a toothache. It won't fix the tooth, but it mildly alleviates some of the pain. A persons IBD condition can flare up or settle down, and the ASA doesn't play a role in that. Just a little relief...I can only presume the inflamation present would feel worse without the ASA

 

[Mazen]

Yeah Kev. That's what my doctor told me. That without Pentasa as maintenance meds my IBD would be much worse. And that it's a mild med , tolerated for long term treatment, and keeps continous antiinflammatory effects...

 

[drew_wymore]

I took Pentasa for 6 weeks without any effect at all, along with Entocort. So I've been bumped up to Prednisone which seems to finally be putting me into remission.

I read somewhere and I hate to hijack the thread a bit, but does Pentasa cause hair loss?

 

[Kev]

Hair loss? I dunno... What does the literature that came with the Pentasa say? Or have you checked the drug manufacturers website for side effect info? I learned an important lesson from the Salofalk website re side effects. Anyway, I've been taking 5-ASA for years (essentially 5 times stronger form of aspirin buffered to make it thru to the intestinal tract before disolving) and its' not caused me any hair loss. Wish that it had. All I need is just one more hair to be swinging from my family tree. Believe me!!

 

[Jvstin]

when I was first diagnosed with Crohns' I was on Pentasa, but after a year or so, I think it stopped having an effect. 6MP seems to do alto more for me, but that's me.
Nexium I've heard that a lot of kronnies don't take well to it. I think Protonix is the best, in my experience anyways. it's expensive unless you have good insurance, I usually get mine from samples from my G.I.
as for the hair loss, I researched that and found pretty much nothing. doesn't mean that there is nothing though.

 

[Kev]

I think I very vaguely recall a crohn's related skin condition that affected the hair folicles (sp?).. sometimes... I also know that some of the drugs we use can cause hair loss in higher doses (typically the immuno suppressors in doses more typical of cancer).. Shame that Old Hat or D Bergman aren't posting on this thread. They do tons of research on this disease, and are both extremely well informed. if anyone had heard of this, I'm betting they would have..

 

[Jvstin]

okay, I actually spoke with someone who had the same concern about loss of hair.
the common ground I found in it was doing 3g of Pentasa a day and having remicade.
that's all I got as a connection. but I'm more interested now because my hairline started to recede shortly after I started remicade but seems to level off when I stopped taking Pentasa.
I'm going to continue to look into this a bit, see if there's something or if I'm just chasing a white rabbit down a rabbit hole that looks like a colon.

 

[Kev]

Any male pattern baldness in the family tree? That's the 1st thing to check..