Well folks, it's been a little over a week on 4.8 g of Lialda and I fear it might be making things worse. Started noticing more watery stools a couple of days ago, and now the frequency has increased, as well. This is even after upping my Imodium to 6 pills a day (from 4). I haven't been eating anything out of the ordinary or done anything else differently, at least not that I can think of. And stress levels are fine. Are there any Lialda users out there who got worse before you got better? Or should I just throw in the towel? One of the listed side effects is diarrhea, so I'm wondering if this is normal... Anyhoo, gonna send my doc a note to let him and know and see what he says. I'd like to give this drug a fair trial, but not if a negative reaction at first is a sign that it's not gonna work in the long run. Any thoughts? Thanks, guys and gals!
Lucy
Thoughts on Lialda?
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Lucy,
It is not likely to get better. Mesalamine is a derivative of salicylic acid, which makes it a close relative to NSAIDs. Because of that, MC patients who react to NSAIDS are very likely to react to mesalamine:
Many of us cannot tolerate mesalamine for that reason.
Tex
It is not likely to get better. Mesalamine is a derivative of salicylic acid, which makes it a close relative to NSAIDs. Because of that, MC patients who react to NSAIDS are very likely to react to mesalamine:
Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous EnterocolitisAlthough mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.
Many of us cannot tolerate mesalamine for that reason.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Good to know. Thanks! Haven't heard back from my doc yet but am hoping he agrees that this drug may not be the best solution. The ones I want to try next (before budesonide) are Allegra and/or LDN, if I can get him to prescribe it. I know he would be down with Rx'ing budesonide, but I'm really nervous about taking it due to a horrible experience with steroids in the past. Also, I am concerned about the cost (as it will be even more expensive than the Lialda, with my insurance). I feel like I'm hemorrhaging money at this point, lol. Finances are also what's holding me back from doing the Enterolab testing. Ah well, c'est la vie.
Budesonide is a Different Steroid
...read recently that only about 20% of budesonide acts as a systemic steroid. The rest of it is SUPPOSED to only affect the colon. I can shake the capsules & hear the little beads of medicine inside-- much like the old 24 hr Contact cold capsules. The little beads are manufactured to get past the stomach & liver too, I'm guessing, & reach the colon intact. I'm sorry I don't remember where I read about that 20% figure but it would have been an rx site listing side effects, dosage,description, etc of budesonide. In other words, Lucy, taking the usual 9mg of budesonide (3 capsules), would be only about 2mg of a steroid. Not much. As I said before, this mesalamine (Apriso) drug did nothing for me-- except cause a bad case of uncontrollable gas. I, too, was shocked when I read that one of the possible side effects was, goodness, diarrhea! Marsha/ponywoman
Thanks, Marsha! My doc wants me to reduce to 2.4 g for a bit and see how that goes. If things don't get significantly better over the next week, I will definitely ask for something else (and I'm sure he'll go for it). Am willing to give budesonide a shot if other options don't work. I'm very interested in LDN, having seen more and more about it recently. Especially b/c I struggle with anxiety/depression in addition to all this autoimmune/inflammatory stuff- two birds! ;) I still haven't tried an antihistamine, so that might be something to experiment with, too...we shall see. I've heard that budesonide has a much better SE profile than Pred due to its limited systemic action, but it still makes me nervous. Sounds like you haven't had any trouble with it, though? Thanks!
Lucy, the budesonide was the only thing last year that kept me from dying as I had to end up in the ER before my GI would prescribe it for me. Got down to 70#. Was 95-100# before CC began last spring 2014. I was already taking prednisone (5mg) daily for rheumatoid so maybe my GI hesitated to prescribe more steroids. But anything under 10mg is considered low dose steroid. Have no idea why regular prednisone won't stop colitis while budesonide did! I've been colitis free for several weeks now & down to 1 budesonide daily for a week. Am going to try cold turkey on it & see how I do without any budesonide. I have a rheumatologist who always wants to put me on these "new" biologic drugs you see advertised (Humera, Enberal,etc) that the drug companies now promote as cures for about everything. They are extremely expensive so big bucks are to be made on their promotion. But their side effects are worse than steroids! I think there is too much fear mongering over the steroid drugs like prednisone. The worst problem with steroids is they can promote osteoporosis as they interfere with the bone building/breakdown cycle of the body. My husband had a close friend who died from taking Enberal (liver cancer) for only a few months & these drugs are famous for causing lymphoma. At my age of 68, I am afraid to take one of these immune suppressing biologics as I believe we all have cancer cells-- somewhere-- but our immune system keeps these cancerous cells under control. These biologics are for young folks, not oldsters who might have cancer lurking in the body. So you see, I'm as fearful of biologics as you are of steroids! I wouldn't live a day without steroids so am biased, I guess.
That is a very astute observation, and I definitely agree with you. The Anti-TNF drugs (IMO) are for gamblers who are willing to spin the wheel of fortune with the hopes of cheating the devil to win a few years of instant gratification, against the odds of losing the ultimate bet, in the long run.ponywoman wrote:At my age of 68, I am afraid to take one of these immune suppressing biologics as I believe we all have cancer cells-- somewhere-- but our immune system keeps these cancerous cells under control.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Ponywoman,
Again...just a thought.....listen to your body.
Brandy
Just a thought but I wanted to share board members generally have good results getting off of budesonide with a slow taper. Consider something like several weeks every other day, several weeks every third day and then cold turkey.I've been colitis free for several weeks now & down to 1 budesonide daily for a week. Am going to try cold turkey on it & see how I do without any budesonide.
Again...just a thought.....listen to your body.
Brandy
ponywoman wrote:My husband had a close friend who died from taking Enberal (liver cancer) for only a few months & these drugs are famous for causing lymphoma. At my age of 68, I am afraid to take one of these immune suppressing biologics as I believe we all have cancer cells-- somewhere-- but our immune system keeps these cancerous cells under control. These biologics are for young folks, not oldsters who might have cancer lurking in the body.
Funny you should mention TNF-a blockers. When my husband and I were on the merry-go-round of autoimmune-related pregnancy loss, a fertility clinic tried to push Humira on me because it was found that I have a high level of TNF-a circulating in my blood. However, I refused for the same reasons you cite. I am young, I guess, but cancer still scares the hell out of me. And people with autoimmune/inflammatory problems are automatically at higher risk. I'm especially afraid of lymphoma. I don't blame you one bit for not going in that direction!
I see no reason why the use of that class of drugs is much safer for younger people — starting younger just allows more time for cancer to develop, and at an earlier age.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I agree, Tex. In other news, the past few days have been horrible. I went from having 2-4 semi-formed stools daily a couple of weeks ago to 10-15 totally liquid ones on Lialda. My doc suggested cutting the dose in half for awhile, but I'm way too spooked by this experience to go any further (unless somebody on here thinks I should give it a shot). Seems like it's definitely exacerbated the inflammation cycle for me. Damn it. :( Can't say I wasn't warned, but I figured it wouldn't hurt to try. I was wrong, haha. Wish there was some way I could donate all these Lialda pills! $100 worth of meds is a lot to waste. I would be MORE than happy to ship them (for free) to anyone with a prescription, but I don't know if that's legal...Tex, do you know? Anyway, onward and upward. My next trial will probably be with Allegra. Sill very interested in LDN, though. And of course Entocort is not to be ruled out if other options don't work. Man, going backwards is so frustrating! Ugh.
That's like cutting a dose of poison in half. What's the point of that?Lucy wrote:My doc suggested cutting the dose in half for awhile
Shipping meds is illegal, but it happens all the time, and even Customs looks the other way, as long as it's no more than a 3-month supply. Any more than that is assumed to be going to an unlicensed dealer, so they are confiscated (at least that's Customs' policy at ports of entry).
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I don't know, I guess maybe he was thinking the higher dose is too much for my system but that a lower dose might work better? I'm not sure. I do trust him, but in this case, I really don't feel comfortable going any further, and I'm sure he'll understand that. When I checked in with him last week, I don't think I was clear enough about how much worse things have gotten- I just said that I'd noticed more frequency and wateriness, but I didn't go into detail (and honestly, it hadn't gotten quite so bad yet at that point). Now I just need to decide what happens next, and what I can afford. Thanks for the info re: med shipping! I figured there were probably all kinds of laws preventing that kind of thing. MAN I hate to waste a medication that could help another person, especially one that's so expensive. If anyone's interested, let me know...I'd probably be willing to risk it. :)