- Location
- Victoria, Australia
My husband has just started pentasa 1 gram sachets. What do others think of it?
Thanks Purdue! I have inflammation in my ileum and I'll be needing it!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...
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 urinei 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.
Any reason your doc put you on steroid, 5-Asa and antibiotics, but not on any long term Crohn's meds (immunosuppresives or biologics)?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)?
Just to clarify, did he also try the two standard long term Crohn's meds: immunosuppressives (azathioprine or 6mp) and biologics (humira, remicade, cimzia...)?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.
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!!Just to clarify, did he also try the two standard long term Crohn's meds: immunosuppressives (azathioprine or 6mp) and biologics (humira, remicade, cimzia...)?
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.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
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.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.
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:heart:Silke are you in Australia. Buchanan caves make me think so. It a lovely place.
Of these meds only 6mp is an effective long term med that can help with keeping in remission. Entocort and Pred are corticosteroids for short term use that cannot help with long term remission. On the effectiveness of 5-Asa people have commented above.He has tried 6mp ( disastrous, put him in hospital for a week!) Entocort, Pentasa and Prednisone in emergencies.
In the illium. In 2000 he had 8 inches removed and the ileocaecal valve. He now has a stricture there but luckily nowhere else and a lot of that is probably scar tissue.Thanks Catherine for tagging me and also Aussie.
@Silke - Whilst there is no problem with controlling Crohn's with diet and Panadol the key word is controlling and by the sounds of it that is not happening with your husband.
Long term uncontrolled inflammation is not a good place to be in due to the damage that is done to the bowel and the high risk complications that can then develop. If he has/is failing steroids, 5ASA's and Immunosuppressives then he should have good clinical and objective markers indicating that an application should be made for biologics but Aussie would be able to clarify that better than I.
As to the Pentasa (5ASA/Mesalamine). It is a first line treatment and not one that I personally feel is suited beyond mild disease. David has a very good thread about Mesalamine and its role in Crohn's here...
http://www.crohnsforum.com/showthread.php?t=36292
The other thing to keep in mind regarding 5ASA's is the different preparations, whilst having the same chemical make up, have various modes of action:
Pentasa - Is targeted to be released along the length of the small and large bowel.
Asacol - Is targeted for release in the large bowel.
Salofalk and Mesasal - Are targeted for release at the end of the small bowel (terminal ileum) and the large bowel.
The effectiveness of 5ASA's whilst questionable do appear effective for some. In our own case, my son saw the GI yesterday and he has added Pentasa to his current therapy of Imuran. I spoke at length with the GI about 5ASA's and Ileal disease but he was able to pull up a couple of positive studies that relate directly to my son's case, that being maintenance of remission following ileocaecal resection. The fact that my son has no issue taking medication and Pentasa is relatively mild and inoffensive drug in the scheme of things then I am happy for him to take it.
Where is your husband's disease located?
Dusty. xxx
What do you mean by biologic?Of these meds only 6mp is an effective long term med that can help with keeping in remission. Entocort and Pred are corticosteroids for short term use that cannot help with long term remission. On the effectiveness of 5-Asa people have commented above.
I know you said you lst faith in conventional drugs, but if your husband has a lot of problems, I would still suggest he still tries out a biologic drug (remicade, humira, cimzia etc.). They are the standard and most effective treatment for Crohn's and help in the majority if patients long term. I know you are worried after his experience with 6-mp, but biologics are different drugs.
Thanks Catherine for tagging me and also Aussie
"Pentasa - Is targeted to be released along the length of the small and large bowel."
Unless I'm terribly mistaken, while the tiny coated spheres of mesalamine could potentially be being released throughout the entire length of the small and large intestines, once those spheres are encapsulated within the patented delivery system that PENTASA uses, (i.e, their distinctive, specifically designed pH RANGE SENSITIVE blue capsule) the mesalamine is normally only released from the dissolving capsule once that capsule is mostly already through the majority of the small intestine.
Of course, we as individuals have variations in the specific pH levels that are ipresent in our GI tracts at the same particular landmarks, and transit times for even the same ingested foods do vary tremendously between people, so one could logically expect a reasonably wide distribution range between where in the small or large intestine the capsules actually begin to release their contents, depending upon "local conditions" so to speak.
For example, if a person typically follows a relatively low fiber diet and has many daily episodes of watery diarrhea to boot, their small intestine may typically be nearly empty of contents when ingesting the Pentasa capsules so there may be little in front of them to slow the capsule's progress when being pushed rapidly along by the watery chime, so the capsules may not have enough time to dissolve properly until past the optimum point for which the mesalamine is intended to be targeted to be most effective.
Alternately if one usually follows a higher fiber diet plan and/or is severely constipated and/or if one or more significant constrictions is/are present, it might already be being mostly released well before that optimal point is reached.