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Are trying other mesalamines worth it?

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Ulcerative Colitis
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Posted 11/19/2014 2:14 AM (GMT 0)
Hey all,

So I'm talking with my family about Humira as the insurance company just called. My mom is a little scared about the side effects of Humira.

She asked if I should try other mesalamines before moving on. I figured it might be a little pointless, except for maybe rectal mesalamines.

I've been having diarrhea, going 7-8 times a day on average, some urgency, but worst of all is the fevers. I get random fevers and feelings that I am sick all the time now, and I figure I may need a more systemic drug to help me get rid of this.

What do you guys think?
Posted 11/19/2014 2:18 AM (GMT 0)
What about mega dose probiotics such as VSL? Almost all UC'rs benefit from very high dose probiotics, it's just a question of which one or more are best for you.
Posted 11/19/2014 2:23 AM (GMT 0)
I do think trying enemas could be beneficial. Have your symptoms improved since diagnosis? It took me close to a year to get things under control. I also switched to a different mesalamine, but it was due to a reaction vs improvement. However I do think there are others on this forum that have benefited from a different mesalamine.
Posted 11/19/2014 3:21 AM (GMT 0)
I would definitely try mesalamine enemas before Humira.

I would definitely try different oral mesalamines before trying Humira. I have been on 3 different oral 5ASA's and each one seems to have done better than the last. I started out with Asacol 400, switched to Asacol HD, switched to Lialda, and now I take Pentasa. It doesn't hurt to try.

I would definitely add mega dose probiotics to your regimen before trying Humira. Most all UC'rs benefit from probiotics as one of our biggest problems is lack of microbial diversity, the good guys in particular.

Some people with UC have problems with fevers but my opinion is that fevers are a response to a pathogen and that might be connected to your UC. Some here would argue that they get fevers also that don't seem to be connected to pathogens and feel that it is just part of the disease. We don't know enough about UC to know who is right or who is wrong or even if anyone is either right or wrong at all. Maybe we can also be both right and wrong. Also, if you actually do have a pathogen (C-Diff for one example), Humira could make it way worse.
Posted 11/19/2014 3:28 AM (GMT 0)
Thank you for your responses everyone :)

Gary - I don't think my insurance covers VSL#3, so I don't think it's a sustainable treatment given our finances. I will bring it up to my GI doc again just to be sure. I totally forgot about it, so thanks!

EDIT: I get fevers that are on and off, and I don't think that's consistent with having a pathogen. I was tested and treated extensively for c diff before I was diagnosed with UC, and all tests were negative. My GI says fevers are normal, and I would think with this being an immune system dysfunction, having random fevers wouldn't be out of the ordinary...

UCanMe - Asacol was working perfectly for a few months but then I randomly went into a flare and haven't really felt the same since. The worst of the flare was really awful. I'm out of that. My current state is manageable, but I have no appetite, I get a fever a few hours after meals, fatigued quite a bit, still have liquid diarrhea, blood maybe 5% of the time.

Post Edited (Tunnelvisionary) : 11/18/2014 8:32:18 PM (GMT-7)

Posted 11/19/2014 3:36 AM (GMT 0)
You may want to look into inexpensive over the counter probiotics. Normally I wouldn't recommend them as they are usually just too low of a CFU count but if finances are an issue some is probably better than none. There have been a few people who post here who seem to do quite well on small CFU count store bought probiotics. While some get fevers that don't seem to be connected with pathogens I respectfully disagree with your doc that fevers and UC is common. I guess it depends on your definition of "common" but I would say that more than 50% of UC'rs don't have a chronic problem with fevers. I know I have never had a fever that I would connect with UC.
Posted 11/19/2014 4:09 AM (GMT 0)
Yep, no fever here. Knock wood! Vsl3 is cheaper in pill form about 35.00 for month. But.... Take it a week straight to build up then take it every other day to stretch of? I use the packets, 80 a month and stretch as far as I possibly can. When I flare like now every day, when not in flare less. I actually stopped taking so maybe that why I flareing. Worth a shot to try them.
Posted 11/19/2014 4:42 AM (GMT 0)
Gary - yes, I suppose how common it is may be up for debate, but even if it was something like less than 50%, that would still be pretty high for the UC population. But, again, just semantics.

I know that since I've been flaring, I get random fevers usually a few hours after eating lunch. My meals generally contain the same major food groups, so it's strange that it doesn't happen to me after breakfast. I suspect it may have something to do with food finally reaching the colon before I start feeling feverish.

Regardless, pre UC and pre-diagnosis, I never had random fevers like this. What made me finally see a doctor after months of continuous bloody stool was that I had a random fever that cleared up in the middle of the day all of a sudden. That got me worried. While mesalamine was working great, no fevers and I could eat my usual foods without any fevers at all. So I believe the fevers are connected with my UC flare up. I will ask my doctor what else could be causing it though, thank you.

DMC2011 - So VSL#3 is $35 a month in pill form? I thought it cost way more than that?

Post Edited (Tunnelvisionary) : 11/18/2014 11:27:39 PM (GMT-7)

Posted 11/19/2014 5:09 AM (GMT 0)
Asacol HD is more of a local, topic mesalamine, right? What if I were to take something with systemic absorption like lialda or pentasa to help tackle the portion that asacol might not be affecting, in addition to mesalamine enemas? Would this be a reasonable plan to try?
Posted 11/19/2014 5:20 AM (GMT 0)
Yep about that price, pills way cheaper! But still need to be refrigerated.

I should try Lailda or pentasa. Are they mesalamines?
Posted 11/19/2014 5:35 AM (GMT 0)
Yes, I believe so, or some sort of derivative of them.
Posted 11/19/2014 1:28 PM (GMT 0)
All mesalamines are designed to be topical and not systemic. Approximately 10% of any of them, including Asacol, wind up being systemic because they get absorbed into the system through the intestinal walls, where they work topcially. Asacol, Lialda, Pentasa, and some others are all the exact same medicine with different enteric coatings to get past the stomach. Since their coatings are all different they release at different parts of the colon so if one isn't working at releasing in the correct area another may help. Personally, I think it may be beneficial to some to actually take more than one kind of mesalamine at once to cover a wider area but no doctors or insurance companies seem to be into that idea.

There are VSL capsules that have 112.5 billion CFU's in each capsule and you can get a bottle of 60 for around $60. That's what I do and order them directly from VSL. You can even get a little bit cheaper prices by buying in quantity. The packets of powder have considerably more CFU's (up to 450 billion CFU's per packet) and those can cost up to four times the price. Many take full packets but you can take partial packets if you want.
Posted 11/19/2014 6:38 PM (GMT 0)
Thanks Gary.

I went to my appointment today and my doc and I talked a lot. He said he had no problem with me trying another mesalamine, so he gave me lialda twice and day and told me to start the rowasa enema. We'll see if that makes things any better. I also said i'll call my insurance and see if VSL #3 is covered, though if a bottle is $60, I might just buy a bottle and try it out.

He was also willing to refer me to Mayo Clinic (there is one nearby where I live - totally lucky!) to get a second opinion about my condition, which I think I may take him up on. He said he was happy to refer me to other people if I felt that my care wasn't sufficient. This made me super happy, because I was originally worried that he would kind of be a stubborn old man and think his opinion is the only one, but he has actually been super compassionate, understanding, and not arrogant at all.

So we are giving different mesalamines a shot and see how things progress from there. If not, I think I may get a second opinion at Mayo, see what they say, and then continue the normal path we were going to go from there.

I asked him to write a letter of medical withdrawal for me, so I have a lot of time to see what works and what doesn't. Fingers crossed things work out sooner rather than later...
Posted 11/19/2014 8:45 PM (GMT 0)
Hi, A couple of things, and of course I may be wrong, but I am sure I read that fevers are a sign of active inflammation, meaning that maybe your dosage of 2,400 mg a day is not enough, that maybe your dosage needs to be higher, or changed to another Mesalamine.
Posted 11/19/2014 9:29 PM (GMT 0)
I am sure you are still having inflamation and I am one to also get fevers. Usually worse during flare. There are times however when I feel feverish but take my temperature and I don't have one. Also I have been noticing with a long hot shower my body hold onto the heat for many hours and I feel feverish. It's like my body can't cool itself. I thought maybe from the medicine. I know I don't tolerate the heat of summer anymore either. Oddly, I had a follow up apt. With a doctor today and had a temp. I also get night sweats sometimes too. I can't say I had these problems prior to UC. I do feel there is a connection.

I hope your new meds work well for you. Keep us posted.
Posted 11/20/2014 1:40 AM (GMT 0)
I'm hoping your new pills work better for you. I was on asacol hd and it worked well, in combination with enemas and suppositories, but then slowly, out of no where I noticed more and more whole pills...then symptoms worsening...then because I was pooping so often again all the asacols were coming out whole. My Dr switched me to pentasa which releases much higher up, but for me, my system moves so fast it seems to be working better.
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