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Symptom Control Vs. Mucosal Healing

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Ulcerative Colitis
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Posted 11/5/2021 12:39 PM (GMT 0)
Hi! You guys are always so helpful so I figured I’d reach out to you again. I’ve had UC since I was 13. It started with Pancolitis but I’ve seemed to manage it well with mesalamine products. I had a short stint on 6mp after a flare, but weened off of it. Only 2 significant flares and have always been able to get off of prednisone with mesalamine.

I had a bout of CDiff a year ago and my stools have been looser, but I only go once a day. My June colonoscopy showed inflammation in rectum and a bit in the sigmoid colon. Fecal Calprotectin of 380. My doctor wants me to go on a biologic (Entyvio but I doubt my insurance will cover it). I’d probably have to go on Humira.

If I had life altering symptoms and felt bad, I’d be all for it. But I’m feeling very good and just can’t get on the biologic train without improving symptoms. The side effects (increased infections, hair loss, skin issues, too many to list) are majorly discouraging when I won’t feel any better than I already do. The only reason I’d be doing it is to prevent cancer, which we aren’t sure it will do.

Just wanted to get some thoughts.
Posted 11/5/2021 1:55 PM (GMT 0)
i changed my diet and my brain when the mesalamines were falling short of my colons expectations - a few blips here and there, but i have been med free for the last 10+ years - my GP doc kinda thought i should have someone take a look up my butt , but things are obviously pretty wonky these days, especially medically speaking and our local GI isn't doing routine scopes until sometime next year ...... maybe - so for now, life is good -

TT
Posted 11/5/2021 3:02 PM (GMT 0)
Are you on rectal medications?
Posted 11/5/2021 3:06 PM (GMT 0)
You said you were diagnosed at 13, how old are you now?

Do you use rectal meds? If not, the rectal meds in combination with oral mesalamine work for many people and definitely worth a try before moving to a biologic.
Posted 11/5/2021 3:42 PM (GMT 0)
I agree with the other posters. It's probably worth trying oral and rectal meds first.

You could also see if any of these possible ways of blocking TNF naturally might work for you:

https://selfhack.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/

(obviously not suggesting you take cocaine or thalidomide!)

However, if all else fails, I wanted to mention that I had no side effects while on Humira for almost 6 years, other than my hair regenerating quickly (I thought at first that it was falling out but it was regrowing as fast as it was coming out. I never got any bald patches).

Notably I didn't get sicker more often, probably because Humira is an anti-TNF, and therefore acts on a specific part of the immune response, ie it doesn't suppress your whole immune system.

Post Edited (UCyousee) : 11/5/2021 9:50:36 AM (GMT-6)

Posted 11/5/2021 4:41 PM (GMT 0)
According to her earlier posts the OP is around 30.

For the OP: simmering inflammation is not good and usually becomes a flare sooner or later. Whether or not biologics are required to control it is a different question, but whatever the risks they are much safer than repeated courses of prednisone.
Posted 11/5/2021 5:48 PM (GMT 0)
I was at a simmer for a while on mesalamine only until I was hit really hard by a terrible flare up. I ended up on high doses of pred for 4 months and then a two month taper but what really helped me turn a corner was adding Imuran to the mix. Later on I had to switch to Colazal because the generic lialda and I didn’t get along and my insurance would not cover name brand. I still use canasa 3 days a week, but I found the Imuran to be a game changer. Was there a reason you came off of 6mp and don’t want to start it up again?
Posted 11/5/2021 5:52 PM (GMT 0)
If it helps at all, the supplements and vitamins that I've found most helpful are:

Grape seed extract (not grapefruit extract)
Slippery Elm
Turmeric
Boswellia
Vitamin D3
Omega 3
Probiotics

But like I said, I didn't have side effects while I was on Humira for 6 years. I only wish it had worked indefinitely!
Posted 11/5/2021 5:53 PM (GMT 0)
Thanks for everyone’s replies. Yes, I’m 30 now. I’ve always taken some sort of rectal meds, either suppository or Enema while taking the max doses of oral mesalamine. I seem to have exhausted the mesalamine route. But I really do feel good and healthy minus some small amounts of blood/mucus. I rarely go more than once a day.

I had been put on 6mp after a larger flare that I just stopped taking after skipping it for several months and not seeing any real side effects. My doctor claims the biologics are better than 6mp now, but I do love the convenience of a pill.

The doctor admits I’m in this gray area where my symptoms are minor most of the time, but he thinks Mesalamine will never put me into full remission. The question is if biologics are worth getting the possible mucosal healing. Most people who end up on them head there also for symptom control and mucosal healing.

It’s hard to change routines when I won’t feel the benefits. It’s more for avoiding potential future complications.

I think I might try supplements/diet/probiotics first
Posted 11/5/2021 6:31 PM (GMT 0)

OP said...
I’m feeling very good...
The only reason I’d be doing it is to prevent cancer, which we aren’t sure it will do

I am not sure what you are saying, that biologics may prevent cancer? Biologics may lower the risk of cancer by lowering inflammation but mesalamines help prevent cancer on their own and not just because they lower inflammation.

I can understand if your flares are intractable and biologics are the only way to manage them. But biologics have their own drawbacks including risk of cancer and may not be the best choice if you are already “feeling good”.

https://www.ncbi.nlm.nih.gov/pubmed/23470503
There is evidence that use of thiopurines and anti-tumor necrosis factor (TNF) agents is associated with an increased risk of lymphoma, particularly non-Hodgkin's lymphoma in patients with IBD. Hepatosplenic T-cell lymphoma, although rare, also occurs with increased frequency in patients treated with thiopurines and anti-TNF medications, and young male patients with Crohn's disease appear to be at greatest risk.
Posted 11/9/2021 6:59 PM (GMT 0)
UCyousee...could you give us the daily dosages of the natural antiTNF supplements you take as listed above? Do you try and take these above the RDA to overcome bioavailability issues?
Posted 11/9/2021 9:29 PM (GMT 0)

damo123 said...
UCyousee...could you give us the daily dosages of the natural antiTNF supplements you take as listed above? Do you try and take these above the RDA to overcome bioavailability issues?

To be honest I didn't do much research on the bioavailability of the herbal supplements I take, partly because I was initially just looking to add more anti-inflammatory ingredients to my diet, but here goes:

Boswellia - the one I'm taking has 75% Boswellic Acids and 10% AKBA Acetyl-11-Keto-Boswellic Acid. They're 300mg tablets and I take one a day. I started on Boswellia this summer, and I think it's making a difference.

Turmeric - The supplement I take is actually 80mg of turmeric dry root (curcumin) and 50mg artichoke dry leaf (cynarin). I take one a day. (It's called Thisilyn Turmeric Xtra).

Grape seed extract - I've bought different brands but the one I'm currently taking is 100mg of grape seed extract per tablet. I started taking grape seed extract around 2015 when there was a lot of discussion on the forum about the microbiome, but I tend to forget to take supplements while I'm in remission so it was a bit on and off, more off than on. The recommended intake on the bottle is higher, but as I'm taking a variety of supplements, to aim for for an anti-inflammatory diet in general, it's fine for me.

Slippery elm powder - I make a drink out of 1 teaspoon of the powder. I find the trick to avoid it going too gloopy (blurgh) is to use a flat or slightly rounded teaspoon, add cold water, then top up with a little hot water, so it's warm.

Vitamin D3 - I've had this on prescription in the past, and I currently take 800iu per day (2 tablets),

Omega 3 -To be honest, the supplement I'm currently taking is ALA (a gummy aimed at children!), and I should probably switch to something with EPA and DHA. I'm thinking of switching to an algae based supplement. I tend to avoid having high doses of omega 3 as a supplement because if I take loads I go off eating oily fish, like salmon.

Post Edited (UCyousee) : 11/9/2021 2:49:08 PM (GMT-7)

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