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Crohn's Disease Forum » Books, Multimedia, Research & News » The Role of Mesalamine in Crohn's Disease


 
08-15-2012, 10:02 AM   #31
Dutch941
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We did metabolite tests.....remember my other post about liver enzyme issue. Hls 6tgn is 365... My concern is that it's too effective....WBC down to 2.9. Which seems too low to me..
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Matt age 13
Dx dec 2011. UC
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6mp from dec 11 to oct 12(stopped after liver enzyme issue)
08-15-2012, 10:06 AM   #32
David
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Ah yes.

I'm not sure what is considered too low for WBC and thiopurine meds. Has your GI commented on it?
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08-15-2012, 10:40 AM   #33
Dutch941
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Planning to ask in a week at next appt
08-16-2012, 09:48 AM   #34
David
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Another hit for Mesalamine. One of the things I did like about it was it was shown to possible help reduce the risk of colon cancer. Well...
NEW YORK (Reuters Health) Jul 20 - A new meta-analysis indicates that 5-aminosalicylic acid (5-ASA) may not protect against colorectal cancer in inflammatory bowel disease.

Dr. Geoffrey C. Nguyen, who led the study, told Reuters Health by email, "5-ASA is very effective as first-line therapy for mild-to-moderate ulcerative colitis. What is more debatable is whether we should use it solely to prevent colon cancer in someone who is already on a different drug to treat the colitis."

...
Source
08-31-2012, 09:48 PM   #35
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I was initially diagnosed with possible UC in May and was put on Mezavant to treat it; it didn't work. I got worse and ended up in hospital and was diagnosed with CD.
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09-01-2012, 01:19 AM   #36
Paddy Holmes
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Someone mentioned that Asacol turned up whole in their faeces. This probably isn't the case, the capsule is designed to release the ingredient faily early on and depending on the area of the colon affected, can then release the casing apparently whole. I studied one after being told this and sure enough there was ahole in the casin and it was empty. I can't take Pentasa as it gives me horrendous migraines so Asacol is my medication of choice. I have an Ileostomy as the main damage is at the join between the colon and Ileum. The main problem I have is due to adhesions( lots of surgery...short bowel syndrome), its very easy to develop blockages and have been hospitalised more than once. Almost easier to give birth LOL!
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09-01-2012, 02:35 AM   #37
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I haven't had a lot of look with Pentasa either - the doctor changed it from Asacol because apparently he said asocol was for the colon only. But taking 2g twice daily made no difference and ended up back on steroids. I presented with symptoms in the small bowel originally but now its mostly sigmoid colon and rectum which is causing me to bleed almost everyday but currently on steroids which has stopped it for mean time.

I am also taking the pentasa suppositories now and i am interested to see if i fair better with these. Maybe it could be better option long term.
09-01-2012, 05:41 AM   #38
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Does anyone have any experience or information about Asacol suppositories for peri-anal Crohns? I would be most grateful for a reply. First post!
09-01-2012, 06:06 AM   #39
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I was given Pentasa 8 years ago but didn't really take it as I felt no benefit what so ever. May be a little constipated from time to time but put that down to my diet.

Now on SaloFalk and Budesonide which I don't think is working at all. Been on both for about 2 months.

I want to come off them and go au natural but guess i will need my GI to agree to this.
09-01-2012, 06:19 AM   #40
ellie
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Does the site of the Crohn's disease affect the effectiveness or otherwise of Mesalamine?
I get the impression that it seems to work mainly in the colon - so if the diagnosis is Crohn's colitis, and not involving other areas of the GI tract, then there is probably a better chance of Mesalamine being helpful? (compared to small bowel involvement?)
Also, strictures seem to be more of a small bowel phenomenon, am I correct..? Don't think I've heard of large bowel strictures from CD... ?



HD
09-01-2012, 09:08 AM   #41
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I was diagnosed with UC and Crohns this past April and I also have an ulcer. I also have Anklyosing Spondylitis. I am presently on Lialda, Budesonide and Omeprazole plus Remicade. Since the UC and Crohns is all new to me I am not really sure how I am supposed to feel but the meds seem to be doing their job. I take the Lialda 4 tablets once a day.
09-02-2012, 12:43 AM   #42
LJoy
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I've been on Pentasa for years but have recently been moved up to Methotrexate and Remicade. The doctor discontinued the Pentasa. So now I have almost 2 bottles of the 1 gram capsules. I think they were expensive and wish I knew someone to give them to.
09-11-2012, 02:53 PM   #43
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Hi Im taking Pentasa 2mgs twice a day , I cant say it works as such , but since i had the granules, the flare ups are not as painful , ive been on it since diagnosis in 2003, Crohn's that is , but i did have to have major emergency surgery , and a hemicolectomy while i was on it , but not on azathioprine, will go back on that as soon as my surgery is done , in the belief that strictures can develop more activly at the site of surgery . im not sure if its habit , taking the Pentasa or it does help , but i will study it a bit more now , seeing the surgeon on Thursday , hopefully with a date for reversal and removal of my gallbladder , i have been waiting such a long time , and considering i have a huge prolapse and a massive hernia under my stoma , i wish it was sooner rather than When ? fascinating reading though , thankyou .
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09-11-2012, 03:39 PM   #44
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Thank you all for this thread!
09-12-2012, 03:55 AM   #45
karj
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My pentasa doesn't do me that good either but there were a few occasions where i ran out of them (was waiting to get paid!!) and I always found i was worse those days, so that makes me think it is helping some little bit.
09-12-2012, 05:50 AM   #46
KWalker
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So Asacol, Pentana AND Mesalmine are all no good?
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09-12-2012, 11:47 AM   #47
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I take pentasa, I do not exactly know how effective it is. I also think it's hard to tell, no it's not as powerful as other medication, but it theory it should work on some level, it works in vitro, it's really hard to judge if it works in vivo I feel.

Considering the really good safety profile, and perhaps the placebo effect that could lead to a clinical improvement, I believe it's still useful for crohn's disease.
09-12-2012, 11:51 AM   #48
kiny
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Someone mentioned that Asacol turned up whole in their faeces. This probably isn't the case, the capsule is designed to release the ingredient faily early on and depending on the area of the colon affected, can then release the casing apparently whole.
that's right, same with pentasa, it can release it's content while staying whole from what I understand
09-20-2012, 05:32 PM   #49
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I've been on both Pentasa and Asacol Hd in the past year. Pentasa worked or a week or two, in helping me have semi formed bms, but after the first coup,e of weeks all I noticed was significant hairloss and no relief in my bowels. I just started Asacol HD about a month ago, and it has the same results. Starting week three a little bit more solid bms, but within a week or two I've gone back to my wonderful watery bms, and fun hairloss. My doctors have been quite conservative in treatment, wanting to try the 5-Asa's before jumping right into the big guns. I already have some health issues due to having a traumatic brain injury. I go back to my GI today thank god, and see what our next plan of action is. I can see from a medical standpoint why physicians want to try melasamine first since technically it has the least amount of side effects, but on the other hand in my opinion it's like putting a bandaid on a compound fracture haha. Plus I have suffered severe hairloss from both which I wouldn't have minded if the actual meds had worked
I had a similar experience with Pentasa. My Crohn's is in the small intestine, but I also had extremely bad hair loss while taking the medicine. It worked for a few months along with the prednisone, but as soon as they weaned me off the prednisone the Pentasa didn't seem to do much. And I agree, as awful as the hair loss was it may have been worth it if the meds worked!
09-20-2012, 09:44 PM   #50
Emily
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Mesalamine (in Pentasa form) exacerbated my symptoms and as soon as I went off it I went into a 10 year remission. Obviously I'm not totally sure if that's cause and effect and this is based on guesswork by my doctor, but just sayin'.
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09-27-2012, 09:47 AM   #51
Dutch941
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Ok...just an update.....regarding the WBC reduction that I mentioned before...my doctor was not concerned about it falling to below 3..... He stated they watch the absolute neutrophils more closely than the WBC.....when they drop below 1 ...they become concerned and will halt 6mp.
That being said the dr did take my son off the 6mp due to liver enzymes refusing to normalize. He wants to make a go of it with just the full possible dosage of pentasa.....any thoughts? He says this may hold things off for 6 months....a year...2 years...who knows. So as much as I worry about 6mp....I am now worrying Bout not having 6mp. Anyone have any suggestions as to nutrition and or supplements that will make this treatment go smoother? Something that isnt impossible for a 13 year old?

Last edited by Dutch941; 09-27-2012 at 09:49 AM. Reason: Typo
09-27-2012, 10:04 AM   #52
David
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I'm not a fan of just Pentasa. How severe is your son's disease? If memory serves, your son won't do total enteral nutrition and I know you're aware of LDN. Maybe try a combination of supplemental enlemental nutrition, curcumin/tumeric, and paleo diet or SCD.
09-27-2012, 10:10 AM   #53
Dutch941
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His disease was labeled as "severe"..but I'm not sure what classifies it as such....upon discovery he had ulcers and damage in his entire colon and it was a hot mess......cleared up quickly with prednisone...followed by the 6mp and it has been a non issue since. Anything diet wise is a bitch. He is extremely moody and resistant......it's hard to even get him to eat a standard healthy diet along with the family....my wife has looked into the SCD and thinks it would be a challenge...I'll have her look again.we did get his folate and b12 levels checked and I'm waiting to see the results. Had to talk the dr into it because he says they are not a concern unless other specific lab levels seem off......he says if the inflammation creeps back up we will discuss starting 6mp at a very small dose or remicade.....I think we would opt for. LDN first though.....
09-27-2012, 10:45 AM   #54
David
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Be sure to get the exact levels of the B12 and folate when the results come back.

Your doctor is likely looking for signs of megaloblastic anemia which just plain aren't always present with B12 deficiency. That 6-MP he was on? That however is known to cause B12 deficiency. In addition to Crohn's interfering as well. In my opinion, not testing B12 levels for someone on 6-MP who has Crohn's is like not doing a CBC. Good job fighting for it!
09-27-2012, 04:08 PM   #55
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diagnosed with Crohns in June.
Was put on Assacol 9 pills a day
I am now normal. The pain has gone away
only going to the bathroom 2 times a day
Even started to by the drugs from Canada to save
money. They work just fine.
09-27-2012, 04:48 PM   #56
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I want to warn everyone who is on/ taking pentasa. I was hospitalized twice last spring with pancreatitis and I am only 20 years old. I'm not a drinker so that was not a factor. I have come to find out that sometimes medicines such as pentasa can cause pancreatitis. I used to think it was the entocort but found out today that entocort causing that is almost unheard of. Pentasa does seem relatively safe I used to think it was harmless. Just keep in mind that it can cause pancreas problems!!
09-27-2012, 07:05 PM   #57
Dutch941
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Chelsey.....follow up questions.....did u learn of your pancreatitis via your lab work? Did they discontinue pentasa and then see an improvement in your pancreatitis?
Also..what was the treatment other than stopping pentasa? How long we're you taking pentasa before having a problem? How much pentasa?

Last edited by Dutch941; 09-27-2012 at 07:32 PM. Reason: Adding text
09-27-2012, 08:34 PM   #58
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I was hospitalized with svere pancreatitis . The drs that had me on pentasa kept ignoring my pancreas and kept saying it was (from my crohns) which I was only diagnosed in February and had been on pentasa for about a month and a half. Today I saw a dr who works at one of the best research hospitals in the country and he informed me that he has never seen a case of pancreatitis w entocort but several w pentasa. I don't drink and have no gallstones so he pretty much said 99% of his guess would be the mesalamine. He said its not common but it happens. I was on 8 capsules a day 500 mg capsules. And I began noticing pancreas pain about 3 weeks after taking pentasa. Every morning really sharp pain that felt like a really strong muscle cramp right where my pancreas is
09-28-2012, 07:04 AM   #59
Dutch941
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Thanks Chelsey....sorry to Hear that......we were informed of the possibility....currently my son is on 5 a day..2500 mg. I believe that his labwork includes several tests to ,watch for pancreatic issues..can't remember which ones....was your dr not reviewing the enzymes that would have indicated an issue?
10-22-2012, 02:38 PM   #60
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My husband's doctor has recently seconded the opinions shared here by David (thank you David for all of the info). He said there is no clinical evidence that Pentasa does anything... And dangerously it's hard to see in a colonoscopy if it's working- there could be inflamed tissue behind the walls.

We are now looking at starting 6mp. On this site there was a wiki article stating that "...azathioprine has many of the same benefits and side effects as 6MP. Azathioprine is less toxic."
Is this true? Should we ask for Azathioprine? David, or anyone, in your research is it just as effective but less toxic?
Of course, we will also check with his doctor...

Thanks,
Tanya
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