LIALDA - 5 ASA Causes Ulcerative Coltis??--According to Shire--- Has anyone had any REAL success?

Hello All, my 17 year old son was diagnosed with UC- whole colon last year.. He has been on Mezavante, steroids for a month as well as rectal doses of asa 5... His BMs occur 5-7 times a day and are pure Dia... I started him on VSL3 and he has had a couple, on off, normal BMs but only for a day here and there...

Has anyone had any REAL success with any anti inflammatory drugs??

I am also very concerned with what I was reading at the Shire Website that states:

"in clinical trials, common side effects reported with Lialda included ulcerative colitis, headache, gas, abnormal liver function test results, and stomach ache. Inflammation of the pancreas was reported which in some cases led to discontinuation of Lialda therapy. Other side effects may occur."

Can someone please explain why the drug lists a side effect the very conditions it is claiming to help??

Since the medical community claims total ignorance of the cause of UC and Crohns and the drugs they prescribe are known to cause the problem it is claiming to cure, doesn't this cause concern for all who are taking or considering these drugs??


Please comment...

Thanks and best of luck to all...

Thanks Sue for the reply... I am sorry to hear about your diagnosis and hope your J-Pouch Surgery has substantially improved your quality of life. :)

I have a big issue with my sons GI as he suggested that food has nothing to do with UC and never suggested Probios or anything other than what he is brainwashed to do...push pills. Needless to say I am looking for a new GI in Toronto, if anyone can offer a suggestion for an "out of the box" GI that looks beyond the magic pill, It would be much appreciated.

As for the side effects, Sure there can be side effects for anything that is ingested by the body, but when a drug lists as a side effect, the same symptoms it is claiming to treat, I have a really big issue with that and will take your advice when I find a new GI :)

Best regards,

Jon

UCDAD1- I'm sorry to hear that your son has to deal with this obnoxious disease! I was put on Lialda and Asacol and had a terrible adverse reaction, being put in the hospital with severe diaherra, blood and cramping. Many people do not respond well to Lialda, but doctors want/need to try this medicine first as it doesn't have nearly as bad of side effects as the other classes of drugs. If your son can stay on the Lialda as his maintenance drug, that would be awesome! Thought many people with UC take months/years to find what works best for you a remission. I hope this helps. You're son is in my thoughts and prayers.

I have been on Lialda for 3 1/2 years. The only side effect I get is looser stool when at the max dose of 4 per day. I also use Rowasa enemas. Doing well with both and hope it continues.

I have been on Lialda for a few years now, and I credit it with clearing the inflammation in my colon down to the sigmoid area.   I was prescribed the lialda because it is supposed to be helpful for pancolitis.  I credit the daily rowasa (over a year of DAILY) with clearing up the are in my rectum. 

I had pancolitis in 2008 (it was actually in patches throughout my colon)  but my latest colonoscopy showed just a 4 inch isolated patch in my sigmoid.  i feel like this is the part that lialda and rowasa cant reach.  I went on imuran 6/12 and i think i can say that after 4 yrs i am finally going into remission.

i think that saying that lialda causes uc makes no sense, i mean why would you take it if you dont have uc????

as far as alternate stuff, i have tried almost everything with no luck, but there are alot of ucers that do have luck with diet mod etc.  so trying diff stuff is worth a try.  If it means anything, after my first flare up when i was 21 yrs old, i had a 15 year remission, so know that remission is possible, and hopefully your son can get there!  Good luck to you and your son :)))

There have been discussions of food and colitis here. Search some up. We have also discussed some of the miscommunication that may be going on when patients and doctors talk about food. Also, there is the question of diet/nutrition "on the radar" via its effect on the gut microbiota, versus diet as any kind of "standard therapy" physicians might be trained to use.

I think you are oversimplifying the issue, possibly being unfair to your doctor, and taking a biased view towards 5-asa. For example you could have said "trained" instead of "brainwashed", but you seem determined to denigrate and reject. If you want experimental therapies, cutting edge treatments, go find a medical researcher who also has a clinical practice. If you see the majority of physicians (who are not researchers), you are going to be offered standard therapies and medications that have a consensus in the medical community as effective. Any physician not using established standards of care is wide open to lawsuits.

I have benefited from Lialda, with only some minor leg pain when at the highest dose. Some (I understand a small percentage) do have some allergic-type intolerance or develop some kidney concerns over time. Standard of care is yearly tests to check kidney enzymes, and problems are generally reversible. I have read study after study that concludes 5-asa are safe and effective for the majority of people. Their primary action is topical and there is only limited systemic absorption.

I think you see things like the possible side effects listed on the Shire website because their lawyers advise them to list everything reported - even if there is no proof that Lialda was the cause. Not disclosing can lead to lawsuits. But even when they say "common" side effects, this has to be taken in the context that only a small percentage of people get side serious effects, and then there are some things that are more commonly reported.

It is also very unfair and inaccurate to say "the medical community claims total ignorance of the cause of UC". They claim SOME uncertainty about the causes and SOME uncertainty about some of the mechanisms. In most cases it is narrowed down to a few possibility and it is unclear which is necessary, which is sufficient, which happens first ... etc. The histological changes that occur with IBD are fairly well understood. Also, over 100 gene loci have been identified that predispose to UC or Chrons or both. There is clear understanding that there is an interplay of genetic and environmental factors. The role of epigenetics and stem cells in addition to genetics is increasingly understood. It is also understood that the "environment" includes diverse things such as dysbiosis of the gut microbiota, to perceived chronic stress, to tobacco cessation, to heavy antibiotic use, to food allergens in the modern diet. In addition to 5-asa there is increased understanding of the potential benefits of immunosuppresants and newer biologics. All this is not even in the same world as TOTAL IGNORANCE. That you so readily accept and assert this TOTAL IGNORANCE viewpoint suggests you are just looking for reasons to reject everything the medical community has to say on the matter. To me, this speaks of pre-formed conclusions and a closed mind.

It is understandable to be concerned, confused, disturbed, angry - a child has a serious chronic, sometimes debilitating, disease ... and it is not clear exactly what to do. Yikes. But, I think the best path forward - either with traditional medicine or with alternatives or with both - is to avoid sweeping generalizations. Learn and keep learning. Give professionals some credit even as you note the flaws in established practices. Give some credence to the many researchers publishing studies about the effectiveness of drugs - even as you consider the mixed agenda of for-profit big pharma.

There are choices to make, there is a lot of recognition that what works for some does not always work for others. There is information about nutrition, probiotics, homeopathic anti-inflammatories, and alternative therapies like LDN. The science is not complete on these things yet, but you might be able to make some choices and see if anything helps in your son's case. You can also keep an ear out for the latest announcements and research, as well as anecdotal accounts of others who have made choices about (or beyond) standard therapies.

I hope the best for your son.

Everyone is so different which makes this a hard disease to treat for the professionals. about med side effects, I have noticed pretty much all of my life that doctors often prescribe meds for a particular thing and you read the side effects and they state the very same thing as the condition you are being treated for. I don't think that the doctors are actually doing anything wrong, I think that that's just the way it is sometimes. I think the truth is that these meds can often help conditions which list the very same condition as a side effect of the meds. Go figure. No wonder there's no cure.

I've been in remission for about 3.5 years now, only with the mesalamines (oral + rectal). I did have to use pred to gain remission, but it was a relatively quick course. So yes, they are working wonderfully for me.

As for Lialda causing UC, I bet that's a "side effect" they had to list. I doubt it actually causes it. For those intolerant to meslamine or to one of the inert ingredients, it could very well worsen UC symptoms, but that's very different than actually causing it.

FYI-- RE fecal transplant: there was a recent post to this forum citing Dr. Lawrence Brandt, a gastroenterologist on the faculty at Albert Einstein Medical College of Yeshiva University in Bronx, NY, USA. Dr. Brandt does FT at Montefiore Hospital there under a protocol he developed. Apparently he considers it most likely to help UCers who are within 3 yrs of diagnosis. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

UCdad1,

Welcome to the forum.

Sorry aout your son's diagnosis.

The warning on the label also serves to tell those who may be sensitive or intolerant of the mesalamines, which some of us are and therefore get worse symptoms. And it's good that the warning is there, because not many docs share the possibility of the intolerance reaction with you when they prescribe the mesalamines.

As far as finding a route around Big Pharma, you'll have to find a doc who is inclined that way - probably holistic, or integrative.

I can tell you that regular meds failed me, and when my GI gave me a choice of remicade or colon surgery - I balked at both and had to find my own way.

And for me, that turned out to be a combination of diet modification, certain supplements like L-Glutamine amino acid, slippery elm powder, lots of probiotics, and LDN, low dose naltrexone.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

"In clinical trials of active ulcerative colitis comparing mesalamine with placebo, the fraction of patients with adverse events ranged from 13% to 73% with mesalamine vs. 22% to 61% with placebo (Loftus et al 2003). The most commonly reported adverse events with the 5-ASA formulations include headache, GI symptoms such as diarrhea, bloating, nausea. Other rare side effects include interstitial nephritis, hepatitis, pericarditis, pancreatitis, pneumonitis, dermatitis, "

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2376091/


As per the studies - 13-73% experience the most common side affects listed above... More people taking 5-ASA got the sides affects vs the placebo group----Very Suspicious indeed!


Once again, I am pointing out a huge inconsistency with Big Pharma and their so called "treatments"

Am the only once concerned about the side affects of the drug meant to treat what it causes???

How does one know if their disease was a short term phenomenon, when the drug prescribed could cause it to be chronic???

uCdad,

I quite agree with you.