- Location
- Victoria, Australia
My husband has just started pentasa 1 gram sachets. What do others think of it?
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Who is using pentasa?
- Thread starter Silke
- Start date
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?
- Location
- New Zealand
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
I,ve been on pentasa for over a year not sure if it does much,I,ve cut my dosage
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.
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.
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.
- Location
- York,
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 
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
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!
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.
- Location
- York,
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)?
- Location
- York,
They said if this don't work they will in August? I honestly have no idea
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.
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.- Location
- Victoria, Australia
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...)?
Glad to hear that Pentasa is working for some of you! :smile: 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!
- Location
- Victoria, Australia
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
- Location
- Victoria, Australia
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.
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.
- Location
- Victoria, Australia
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.
- Location
- Victoria, Australia
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:
Catherine
Moderator
Silke, Sarah going well for the most part she doesnot have any Crohn's symptoms. She is starting training to come a swimming teacher tonight after school;
What medications has your husband tried?
What city is his specilist in?
Have you tried one of the big Crohn's clinic?
Not we have used it, The Alfred Hospital is suppose to have some great Crohn's specialist.
What medications has your husband tried?
What city is his specilist in?
Have you tried one of the big Crohn's clinic?
Not we have used it, The Alfred Hospital is suppose to have some great Crohn's specialist.
- Location
- Victoria, Australia
He has tried 6mp ( disastrous, put him in hospital for a week!) Entocort, Pentasa and Prednisone in emergencies. Our specialist comes to Bairnsdale and we see him there. No we don't know of any Crohns clinics but we have seen a Dr Connell? in St. Vinnies at their IBD Clinic and it was he who suggested the Balloon Dilation Procedure. I would love to know who this Crohns specialist is at the Alfred?
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.
DustyKat
Super Moderator
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
@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
- Location
- Victoria, Australia
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
- Location
- Victoria, Australia
What do you mean by biologic?
DustyKat
Super Moderator
Biologics are at the top of the table when it comes to treatment.
There are two schools of thought when treating IBD. The step up and the top down. This refers to long term treatment of the condition.
The step up is when you start with something like Pentasa, when that fails you step up to the immunosuppressives like 6MP, when that fails and you then move to the next class of drug which is the biologics.
The top down approach is the opposite. You start with the biologics. The idea being you hit the disease hard and fast and hopefully gain full mucosal healing remission before lasting damage is done. In countries like Australia where the biologics are subsidised the step up approach is normally what is taken due to Medicare requirements, paediatric patients may be an exception though.
A biologic isn't a synthetic drug as such, it is made from either human or animal protein, and is like an artificial antibody. The two available on the PBS at present for Crohn's are Remicade and Humira. Remicade is given intravenously at about 8 week intervals. Humira is an injection (sub cutaneously, like insulin) that you administer yourself at home and is normally given every 2 weeks.
Dusty. xxx
There are two schools of thought when treating IBD. The step up and the top down. This refers to long term treatment of the condition.
The step up is when you start with something like Pentasa, when that fails you step up to the immunosuppressives like 6MP, when that fails and you then move to the next class of drug which is the biologics.
The top down approach is the opposite. You start with the biologics. The idea being you hit the disease hard and fast and hopefully gain full mucosal healing remission before lasting damage is done. In countries like Australia where the biologics are subsidised the step up approach is normally what is taken due to Medicare requirements, paediatric patients may be an exception though.
A biologic isn't a synthetic drug as such, it is made from either human or animal protein, and is like an artificial antibody. The two available on the PBS at present for Crohn's are Remicade and Humira. Remicade is given intravenously at about 8 week intervals. Humira is an injection (sub cutaneously, like insulin) that you administer yourself at home and is normally given every 2 weeks.
Dusty. xxx
Hi Catherine, there a quite a few excellent IBD specialists in Melbourne - the two hospitals you mentioned (St Vincents and The Alfred) both have dedicated IBD clinics.
At the Alfred, Peter Gibson and Miles Sparrow, and at St Vincents, Bill Connell and Michael Kamm just to name a few.
Best wishes.
At the Alfred, Peter Gibson and Miles Sparrow, and at St Vincents, Bill Connell and Michael Kamm just to name a few.
Best wishes.
I've been on it for 24 hours now. Im on 1000mg 4x a day. Is it supposed to drop your diarrhea from 8-12 times a day to Zero? I'm rather nervous at this point. I had 6 months of 8-12 episodes before this. Today feels bizarre needless to say. I'm also on Flagyl as well. I was just diagnosed with Crohn's yesterday.
I am on Pantasa 3g, have been since I was diagnosed in Feb. It didn't really help me by itself and I had to keep going back on steroids. I am on Imuran and Pantasa now and things are looking up! Oh and no side effects what so ever when I was just on the Pantasa
I wish your husband good luck with PENTASA, and that it will be all that he will need to resolve his current issue. The jury is still out as far as I'm concerned......
Having been free of serious Crohn's flares for 46 years until Fall of 2012 (ever since bowel resection surgery removing a couple of feet of small and the first section of large intestine at age 14), I've been taking Pentasa 500mg x 8 daily for about 4 months now.
Obviously with that sort of track record my Crohn's case has been a mild one up to this point.
Post surgically I'd been at the near diarrhea end of the spectrum my entire adolescent and adult life, so a sudden change towhat ended up being months of almost constant constipation was hard to ignore (pun intended), and of concern.
I can't say for certain how much of the credit for resolving this single flare up should be credited to Pentasa though, because by the time that I got in to see the Dr. and had the colonoscopy scheduled and then had it analysed a couple of months had already gone by, and by that time the problem had significantly lessened-likely from a series of dietary changes that I'd instituted myself. (although the 'scope exam still showed a lot of inflammation and some ulceration at and adjacent to the anastamosis-to the point of what appeared to nearly complete obstruction in one photo)
The dietary steps included initially ADDING dietary fiber (which didn't help at the time but which definitely DOES help me now) switching to an even lower carbohydrate diet than I had been previously following due to borderline type 2 diabetes issues (which also did not help), then finally following a very low RESIDUE, mostly liquid diet-which did seem to help. My theory is that this last step basically gave my GI tract so much less work to do that it had time to rest/start healing.
His advice had also included stopping the NSAID I'd been taking as needed for pain for about the last 15 years (naproxen), and to not take ANY NSAID's at all, which was a problem as I'd been using that for arthritis/back pain relief. He suggested acetamenophen (which has it's own safety concerns and was almost useless by comparison with naproxen for pain relief). Nonetheless, I took acetamenophen for about 2-1/2 months as it was better than doing nothing for pain.
Interestingly I hadn't realised how much antiinflammatory impact the naproxen had actually been having until I stopped taking it. At first I wasn't sure if Pentasa or acetamenophen was causing the newly started lower leg edema I began to experience almost immediately after having started them both the same day, but after stopping and restarting them individually, determined that it was not Pentasa-and may not have been the acetamenophen either, but the cessation of naproxen.
Next he suggested substituting a couple of different popular name brand pain meds, each with loads of bad side effects (and no antiinflammarory properties) or steroids which I was not confortable doing as I'd had previous bad side effects from prednisone while treating a serious poison ivy eposode that had gone systemic.
(Started taking tramadol 100mg total daily dose about a month ago for pain and for me that seems to be a good match for pain relief to 2-4 220 mg naproxen sodium daily.)
While researching NON-Rx, NON 'labelled as such" NSAID's, but natural compounds and assorted antiinflammatories, including certain spices on my own, I came across an NIH study about omega 3 which showed a strong correlation to it and reduced inflammation (within the limits of the study), so I increased what I'd already been taking of that to a daily rate of about 3600mg daily-about a week after starting PENTASA.
Have a second followup visit coming with the GI Dr shortly, and am anxious to see if he thinks it's advisable to stop taking Pentasa. If so, at least I'll be able to tell if the omega 3 is actually what's been helping with inflammation and especially working on the peripheral edema issue or if it's been a spillover effect from taking Pentasa.
Having been free of serious Crohn's flares for 46 years until Fall of 2012 (ever since bowel resection surgery removing a couple of feet of small and the first section of large intestine at age 14), I've been taking Pentasa 500mg x 8 daily for about 4 months now.
Obviously with that sort of track record my Crohn's case has been a mild one up to this point.
Post surgically I'd been at the near diarrhea end of the spectrum my entire adolescent and adult life, so a sudden change towhat ended up being months of almost constant constipation was hard to ignore (pun intended), and of concern.
I can't say for certain how much of the credit for resolving this single flare up should be credited to Pentasa though, because by the time that I got in to see the Dr. and had the colonoscopy scheduled and then had it analysed a couple of months had already gone by, and by that time the problem had significantly lessened-likely from a series of dietary changes that I'd instituted myself. (although the 'scope exam still showed a lot of inflammation and some ulceration at and adjacent to the anastamosis-to the point of what appeared to nearly complete obstruction in one photo)
The dietary steps included initially ADDING dietary fiber (which didn't help at the time but which definitely DOES help me now) switching to an even lower carbohydrate diet than I had been previously following due to borderline type 2 diabetes issues (which also did not help), then finally following a very low RESIDUE, mostly liquid diet-which did seem to help. My theory is that this last step basically gave my GI tract so much less work to do that it had time to rest/start healing.
His advice had also included stopping the NSAID I'd been taking as needed for pain for about the last 15 years (naproxen), and to not take ANY NSAID's at all, which was a problem as I'd been using that for arthritis/back pain relief. He suggested acetamenophen (which has it's own safety concerns and was almost useless by comparison with naproxen for pain relief). Nonetheless, I took acetamenophen for about 2-1/2 months as it was better than doing nothing for pain.
Interestingly I hadn't realised how much antiinflammatory impact the naproxen had actually been having until I stopped taking it. At first I wasn't sure if Pentasa or acetamenophen was causing the newly started lower leg edema I began to experience almost immediately after having started them both the same day, but after stopping and restarting them individually, determined that it was not Pentasa-and may not have been the acetamenophen either, but the cessation of naproxen.
Next he suggested substituting a couple of different popular name brand pain meds, each with loads of bad side effects (and no antiinflammarory properties) or steroids which I was not confortable doing as I'd had previous bad side effects from prednisone while treating a serious poison ivy eposode that had gone systemic.
(Started taking tramadol 100mg total daily dose about a month ago for pain and for me that seems to be a good match for pain relief to 2-4 220 mg naproxen sodium daily.)
While researching NON-Rx, NON 'labelled as such" NSAID's, but natural compounds and assorted antiinflammatories, including certain spices on my own, I came across an NIH study about omega 3 which showed a strong correlation to it and reduced inflammation (within the limits of the study), so I increased what I'd already been taking of that to a daily rate of about 3600mg daily-about a week after starting PENTASA.
Have a second followup visit coming with the GI Dr shortly, and am anxious to see if he thinks it's advisable to stop taking Pentasa. If so, at least I'll be able to tell if the omega 3 is actually what's been helping with inflammation and especially working on the peripheral edema issue or if it's been a spillover effect from taking Pentasa.