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What would you do if you couldn't tolerate mesalamine?

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Ulcerative Colitis
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Uniform Charlie
Veteran Member
Joined : Jul 2015
Posts : 1095
Posted 2/2/2020 6:40 AM (GMT -7)
I've had a difficult time over the last few years figuring out some nerve issues. In the last several weeks, they have gotten bad enough that they are interfering with my everyday life. Burning pains and urinary discomfort are the main issues. This has caused me anxiety and difficulty sleeping. A neurologist I've been seeing suspected fibromyalgia, but I have always suspected a connection with mesalamine.

As an experiment this week, I stopped taking lialda for 4 days (had to cut out coffee too) and the pain disappeared. Last two nights, I have taken 1 lialda and have had minor burning sensations the next morning.

I will be experimenting over the next few weeks to make sure this wasn't a fluke but I don't know what I will do if I find out I'm intolerant to mesalamine. I am in remission (have been for a long time). My case has generally been mild. What would you do? I may be able to limp along on a low dose but this strikes me as a bad idea. I am afraid of long term nerve damage. I have been on cymbalta to help with the pain but it is not doing the trick anymore.
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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 2/2/2020 10:55 AM (GMT -7)
Bottom line...no pun intended...if you are sensitive to mesalamine, you may be sensitive to salicylates in general. That can include foods that have them naturally occurring. Maybe do your experimenting across the board instead of only mesalamine. I don't see the point of using it low dosage....because of needing to increase during a flare.

Is LDN an option to try?
q
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suchatravesty
Regular Member
Joined : Dec 2017
Posts : 322
Posted 2/2/2020 11:37 AM (GMT -7)
Lialda gave me terrrrrible migraines. One of them lasted four days, and only broke when I went to urgent care and got an injection. I have no issue with salicylates at all. Because I could not tolerate the mesalamine, my GI put me on Humira. I would discuss this with both your neurologist and your GI and figure out a plan of action to see if this is the case.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16194
Posted 2/2/2020 4:03 PM (GMT -7)
If you cannot tolerate mesalamine, then there's either:

1.) Thiopurines: azathiopurine/imuran/6-mercaptopurine

2.) Biologics: Remicade/humira.
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IamCurious
Veteran Member
Joined : Jan 2010
Posts : 3555
Posted 2/2/2020 5:06 PM (GMT -7)
I am allergic to mesalamines and that turned out to be a blessing in disguise because it forced me to manage my disease thru diet and supplements.

Monitoring my diet wasn't so bad because for the most part those foods that inflame my gut are the junk and processed foods that I should avoid anyway, (see my signature). God knows how many donuts I have refrained from eating in the past 10 years. Forgoing beer is a sacrifice but red wine seems OK for my gut. Of course everyone is different so you should see what food triggers apply for yourself.

The effectiveness of supplements varies from person to person. For example some people swear by boswellia and there are many good studies vouching for it. But boswellia gives me IBS symptoms. There must be dozens of posts here at HW discussing supplements that some of us have found effective.

My signature summarizes some of the effective supplements that work for me. One advantage of taking a supplement such as curcumin, for example, is that it is an effective treatment for many other conditions besides IBD.

I think we can consider the National Institutes of Health as a reliable source for research on curcumin.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3535097/
Extensive research over the past half century has shown that curcumin (diferuloylmethane), a component of the golden spice turmeric (Curcuma longa), can modulate multiple cell signaling pathways. Extensive clinical trials over the past quarter century have addressed the pharmacokinetics, safety, and efficacy of this nutraceutical against numerous diseases in humans.

Some promising effects have been observed in patients with various pro-inflammatory diseases including cancer, cardiovascular disease, arthritis, uveitis, ulcerative proctitis, Crohn’s disease, ulcerative colitis, irritable bowel disease, tropical pancreatitis, peptic ulcer, gastric ulcer, idiopathic orbital inflammatory pseudotumor, oral lichen planus, gastric inflammation, vitiligo, psoriasis, acute coronary syndrome, atherosclerosis, diabetes, diabetic nephropathy, diabetic microangiopathy, lupus nephritis, renal conditions, acquired immunodeficiency syndrome, β-thalassemia, biliary dyskinesia, Dejerine-Sottas disease, cholecystitis, and chronic bacterial prostatitis. Curcumin has also shown protection against hepatic conditions, chronic arsenic exposure, and alcohol intoxication.

Dose-escalating studies have indicated the safety of curcumin at doses as high as 12 g/day over 3 months.

Curcumin’s pleiotropic activities emanate from its ability to modulate numerous signaling molecules such as pro-inflammatory cytokines, apoptotic proteins, NF–κB, cyclooxygenase-2, 5-LOX, STAT3, C-reactive protein, prostaglandin E2, prostate-specific antigen, adhesion molecules, phosphorylase kinase, transforming growth factor-β, triglyceride, ET-1, creatinine, HO-1, AST, and ALT in human participants. In clinical trials, curcumin has been used either alone or in combination with other agents. Various formulations of curcumin, including nanoparticles, liposomal encapsulation, emulsions, capsules, tablets, and powder, have been examined. In this review, we discuss in detail the various human diseases in which the effect of curcumin has been investigated.
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Uniform Charlie
Veteran Member
Joined : Jul 2015
Posts : 1095
Posted 2/2/2020 7:29 PM (GMT -7)
I did not consider salicylates. I haven't had an issue with any foods in the past but that doesn't mean anything. I love all the foods with salicylates. That would be a shame.

Thanks for all the replies.
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chikinnooodle
Regular Member
Joined : Oct 2017
Posts : 125
Posted 2/5/2020 10:31 PM (GMT -7)
So weird, I just posted a topic about Lialda and B12. I’ve been on Lialda for 2.5 years and I’ve began suffering from nerve type pains and bladder issues the last 6 months. No idea if it’s a coincidence or not.
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