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Crohn's Disease Forum » Treatment » 5-ASA/Mesalamine » Who is using pentasa?


 
05-29-2013, 01:45 AM   #1
Silke
 
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Who is using pentasa?

My husband has just started pentasa 1 gram sachets. What do others think of it?
05-29-2013, 02:17 AM   #2
Jennifer
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I used to take Asacol (mesalazine, same thing) for well over 15 years and never had any side effects from it. Not quite sure how well it worked honestly. I also took 6MP as well and was also given steroids during a flare (had two flares while on Asacol before my resection within 5 years from each other and continued Asacol and 6MP after my resection for about 13 years). I encourage you to give this a read: http://www.crohnsforum.com/showthread.php?t=50253 Do you have any specific questions about it?
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05-30-2013, 12:18 AM   #3
Caromel
 
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I have been taking Pentasa for 7 years and have had zero side affects from it. It did help my immflamtion however, I am currently weaning myself off of it because I think I'm ready for a more holistic approach.
05-30-2013, 12:26 AM   #4
lizbeth
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Hello and welcome to the forum .

I've been on pentasa for 6 months with no side effects, I don't think I it's enough on its own cos I'm still sore every day buy is better than it was. Hope your husband does well on it, good luck and best wishes.
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05-31-2013, 12:44 AM   #5
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Hi I have been on and off pentasa last 28 yrs,it is an antiflam,I've not had any side affects.i take omega3 and Vit D3 and cherryvite and am currently not on any meds for actual crohns,hope all goes well
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05-31-2013, 01:34 PM   #6
Axelfl3333
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I,ve been on pentasa for over a year not sure if it does much,I,ve cut my dosage
06-01-2013, 07:45 PM   #7
badbelly
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I've been on it for about 3months. I know it's helping at least a bit since I went without for a few days between refills and symptoms got a bit worse. It is not working to totally keep my Crohn's under control by itself though. I'm starting new medicine soon in addition.
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06-01-2013, 08:01 PM   #8
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I've been on Pentasa for 9 years. The dosage has varied. Right now I'm taking the pills (500mg each), 2 pills 3 times a day. I haven't had any negative side effects from it. And it seems pretty effective. It doesn't solve the whole problem, but it definitely helps a lot.
06-02-2013, 04:01 AM   #9
alex_chris
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I was on 5-Asa from 1999 to 2003. Didn't help me to get into remission. I ended up in surgery in 2003 with two strictures being removed from my smaller intestine (that had formed long term, not sure whether they had started to form even before I started with 5-Asa).

Having read countless articles on long-term management of Crohn's, I am always skeptical about a 5-Asa only therapy for Crohn's, even for people who have little in terms of symptoms. Of course there are always exceptions with people staying in remission for years with 5-Asa helping, but I don't think they are the majority.
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06-05-2013, 08:21 PM   #10
Fosterfamily2303
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I'm on Pentasa for about 2 months now. 4pills twice a day..Working well. The only thing I have had trouble with is developing gastritis from the medication. Just one more medication I have to take nw..woohoo lol. I also take entrocot 3 pills a day. Vit. d3 and B12 too
06-05-2013, 11:49 PM   #11
purdueCrohns
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It's a first line med. For many people, it'll work for a while and then stop. Keep using it while you can because it's probably one of the least harsh crohn's meds. I am on it as a maint drug while on remicade now
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06-19-2013, 08:40 PM   #12
Gcoupe
 
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I don't mean to jack this thread with my question but
when you're flaring pretty badly, does pentasa just come out even without being absorbed?

It feels like this is what's happening to me right now.
06-19-2013, 09:23 PM   #13
purdueCrohns
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Yes, that is normal. You do absorb some though. Keep on taking it unless your doctor says otherwise. I have been on pentesa for 13 years. Even when I'm not flaring there are times when I don't absorb it all. It's designed to be absorbed in your ileum so there's a good chance you'll see the little white balls in your poo...
06-19-2013, 09:25 PM   #14
Gcoupe
 
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Yes, that is normal. You do absorb some though. Keep on taking it unless your doctor says otherwise. I have been on pentesa for 13 years. Even when I'm not flaring there are times when I don't absorb it all. It's designed to be absorbed in your ileum so there's a good chance you'll see the little white balls in your poo...
Thanks Purdue! I have inflammation in my ileum and I'll be needing it!
06-19-2013, 10:13 PM   #15
Amy2
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Son has been using Pentasa since early March and says he can feel it when he's late taking it, so he thinks it's doing something for him. Thankfully, he hasn't experienced any negative side effects. He takes 2 pills 3 xs a day.
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06-20-2013, 12:02 PM   #16
matty
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i have been taking it for about 4 months and it does help but not enough for remission, so my gasto dr. added entocort 1 month ago. Still the same, but then my monthly's mess everything up and am also on antibiotics right now which i think are causing more stomach aches, so i don't know if my entocort is helping or not rightnow.
06-22-2013, 06:29 AM   #17
Fosterfamily2303
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i have been taking it for about 4 months and it does help but not enough for remission, so my gasto dr. added entocort 1 month ago. Still the same, but then my monthly's mess everything up and am also on antibiotics right now which i think are causing more stomach aches, so i don't know if my entocort is helping or not rightnow.
I'm in the same boat!! Now on Pentasa, entrocot , cipro , flagyl and one other med for spasms and reflux. All I noticed was worsening of stomach pain , nausea, dry mouth, dizzyness and dark urine
06-22-2013, 06:49 AM   #18
alex_chris
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I'm in the same boat!! Now on Pentasa, entrocot , cipro , flagyl and one other med for spasms and reflux. All I noticed was worsening of stomach pain , nausea, dry mouth, dizzyness and dark urine
Any reason your doc put you on steroid, 5-Asa and antibiotics, but not on any long term Crohn's meds (immunosuppresives or biologics)?
06-22-2013, 07:20 AM   #19
Fosterfamily2303
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Any reason your doc put you on steroid, 5-Asa and antibiotics, but not on any long term Crohn's meds (immunosuppresives or biologics)?

They said if this don't work they will in August? I honestly have no idea
06-22-2013, 04:58 PM   #20
xxjemmamxx
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Been on the Pentasa sachets for 3 months now Started off on 2gs a day and then doubled to 4gs a day. Not really sure if it is working or not as I'm not symptom free but I would much rather take my Pentasa than nothing at all.
06-22-2013, 08:33 PM   #21
Silke
 
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Well , my husband gave up on the pentasa. Didn't help and possibly made him worse. Ento cort didn't work for him either. So far he hasn't found a single drug that works except for cortisone in an emergency but it has been years since he has had to resort to that. The only drug he is on is Nexium for his hiatus hernia that was recently discovered and this seems to help with his upper stomach pains. He controls his crohns with diet and panadol. When it comes on he stops eating and has a glass of sustagen and 3 panadol and goes to bed. He then gets a full night sleep and he's fine in the morning.
06-23-2013, 02:36 AM   #22
alex_chris
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Well , my husband gave up on the pentasa. Didn't help and possibly made him worse. Ento cort didn't work for him either. So far he hasn't found a single drug that works except for cortisone in an emergency but it has been years since he has had to resort to that. The only drug he is on is Nexium for his hiatus hernia that was recently discovered and this seems to help with his upper stomach pains. He controls his crohns with diet and panadol. When it comes on he stops eating and has a glass of sustagen and 3 panadol and goes to bed. He then gets a full night sleep and he's fine in the morning.
Just to clarify, did he also try the two standard long term Crohn's meds: immunosuppressives (azathioprine or 6mp) and biologics (humira, remicade, cimzia...)?
06-23-2013, 02:30 PM   #23
matty
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i've been onpentasa for 4 months and its helping, but not completely so started intocort 1 month ago. If my crohns is relativelymild, why is this not completely helping
06-23-2013, 02:57 PM   #24
Stardust_Fiddle
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Glad to hear that Pentasa is working for some of you! I've been on it, along with Entocort, since April but neither is working and my Crohn's is severe so I'm supposed to start Humira or Remicade in late August or September. Fun, fun!
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06-24-2013, 01:09 AM   #25
Silke
 
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Just to clarify, did he also try the two standard long term Crohn's meds: immunosuppressives (azathioprine or 6mp) and biologics (humira, remicade, cimzia...)?
His specialist put him on 6mp and he had such a bad reaction to it that it put him in hospital for a week with the shivers (really, really bad ones) hives, painful joints etc...one night he felt like someone was putting a red hot poker in his eye! And because of the trauma it bought on a crohns attack. So the poor man is never going on that drug again!!
The others that you mention he has not tried but we follow the specialists advice and he obviously doesn't think Dave is suited to the others. Interestingly our GP told us not to get talked into any more drugs and just manage it the way we always have without drugs.
We do everything we can to ensure that our lives are as stress free as possible. We live in our mudbrick house in the bush and he has a lovely job at the Buchan Caves. We have a good relationship (been together 36 years with 2 beautiful daughters) We grow a lot of our own food, don't smoke, rarely drink and generally have a peaceful country life. I know Dave cannot handle stress at all and if his emotions are disturbed...hello crohns attack
06-24-2013, 01:17 AM   #26
Silke
 
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i've been onpentasa for 4 months and its helping, but not completely so started intocort 1 month ago. If my crohns is relativelymild, why is this not completely helping
I have noticed that a lot of people have said that Pentasa alone doesn't do much. Dave tried both pentasa and entosort to no avail but not at the same time. Read my reply to alex chris. I can't stress enough our new regime of ..when it comes on, stop eating, have sustagen instead of a meal, then go to bed with 3 panadol and get a deep sleep. It works every time for him.
06-24-2013, 01:48 AM   #27
alex_chris
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Silke, as long as he can manage Crohn's without regularly having problems, your doc is absolutely right that he really should take any meds. However, if he is flaring every few months or so or otherwise has problems, then despite his history of not taking meds, he could try biologics. Having a bad reaction on 6-mp doesn't preclude the possibility that he as no problems with e.g. humira. Bu again, you are right that any long term meds should only be used if really required.
06-24-2013, 04:02 AM   #28
Catherine
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Silke are you in Australia. Buchanan caves make me think so. It a lovely place.
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Has previously taken Multi B, Caltrate, B12 & Iron

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06-24-2013, 07:41 PM   #29
Silke
 
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Silke, as long as he can manage Crohn's without regularly having problems, your doc is absolutely right that he really should take any meds. However, if he is flaring every few months or so or otherwise has problems, then despite his history of not taking meds, he could try biologics. Having a bad reaction on 6-mp doesn't preclude the possibility that he as no problems with e.g. humira. Bu again, you are right that any long term meds should only be used if really required.
alex chris thankyou for your reply...maybe I should clarify - He does regularly have flare ups, in fact it really affects his life on a daily basis if nothing else but almost constant fatigue and almost always loose bowels - but what I am trying to say is that every time we try a new medication it fails so we are rapidly loosing faith in drugs. I even bought serovera from America at a huge cost and he was on that for 6 months and it just made him worse and that is a natural anti inflammatory based on aloe vera. It's like his body just doesn't like anti inflammatories.
He had a bowel resection in 2000 and numerous emergency trips to hospital over the years and now his new therapy is 6 monthly balloon dilations to keep his stricture open and of course dietary changes. Oh he also has an almost constant ache where the stricture is and intermittent cramps but these seem to have eased since taking magnesium.
06-24-2013, 07:46 PM   #30
Silke
 
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Silke are you in Australia. Buchanan caves make me think so. It a lovely place.
Yes Catherine we live in Buchan, Australia and Dave works at the caves. So sorry for your poor daughter, I can't imagine how the poor young girl handles it, it's bad enough watching your partner suffering and asthma too! Feeling for you both
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