"Deep" Remission - Worth it?

I hear you. Yeah, it's a much easier choice when you're prednisone-dependent and suffering badly in a flare to make the jump to stronger medications (like I was). These meds were offered earlier, as I was simmering with mild inflammation but I turned them down. I then flared like all ungodly hell and ended up taking those meds.

Deep remission means the longest possible remission, least frequent and mildest flares. So there's a big quality of life advantage to it. It lowers your colorectal cancer odds as well.

What does long term untreated inflammation mean? Highest odds of flaring again, soon. Often it impacts quality of life in many (maybe not so much for you with 1-2 bms a day). The bigger issue is it increases your odds of a colorectal cancer, which is something you should factor in as part of your equation. Inflammation is a precursor to dysplasia which is a precursor to cancer.

As you have only mild inflammation with minimal quality of life impact, you could consider the thiopurines (azathioprine/imuran/6mp) at a lower dosage and see if that's enough. They might take 3-months to work, but you aren't in dire-straights, so it would be fine. The routine blood monitoring is a bit of a pain in the butt, but is only every 3-months after a while (more frequently at 1st).

Well remicade has been on the market since 1999, 20-years so it's long term track record is pretty well know. Biologics are blood-born proteins, similar to the many we're routinely exposed to as part of our environment. Our body has many protein antibodies (created to protect against various things we're vaccinated against or exposed to) that circulate in our blood stream for our whole lives. Biologics themselves are antibodies.

And the whole "for life thing" doesn't have to be wielded like an executioners ax above your head. For as long as it works for you is best. Same thing goes for your mesalamine, it's for life, or as long as it works for you.

And if you're dead-set-against immuno-suppression, and your inflammation is only mild then there's a more unconventional case for just throwing more mesalamine at it. Doc had me take 4.8-grams oral mesalamine, and 8-grams rectal-route (two, 4.0 gram rowasa enemas a day) for a grand total of 12.8 grams of mesalamine a day. It's really hard to overdose on mesalamines at UC dosages. You could try a similar larger mesalamine dosage for a couple months and see if it gives you a remission, and then taper down. Always takes more meds to initially achieve a remission then to sustain it and all. Some sense in treating mild inflammation with only mild meds (just maybe a whole lot higher dosage of them).

I never elected to move up the medical ladder myself. I was left with it being my only option because things had gotten so severe. I can see both sides. It sounds like you're doing quite well as is, but the other side of the coin is that maybe you can add something to get things to 100% and really eliminate the possibility of things progressing. The problem with #2 is, you don't know that it will work out like that. You could add something and end up flaring sooner than you would have if you had done nothing - it's probably unlikely but I don't think there's really any way to know what the future holds. Can you try other rectals? Maybe an addition of steroid enemas every other night for a while would help. Imuran/6mp might be a good option for you too since things are mild. Maybe try adding more rectals and recheck FCP.

VERY helpful input everyone. I have a few detailed questions I want to ask the Doctor on Monday based on her experience and then hopefully I can make the best possible decision with the information available to me.

Thanks iPoop, I will read through that this weekend.

I have no advice to give, just wanted to give my opinion/experience with Entyvio. I've been on it for 2+ years now and am in clinical remission. I only had UC for 1 year before going on Entyvio, but it was a pretty severe flare and I was prednisone dependent. And the lingering inflammation did end up giving me some dysplastic polyps. My last 2 colonoscopies were clean though (had to repeat them every 6 months).

Except for the cost, (which doesn't affect me as Medicare (so far!) pays out of the Medical side and not prescription because the infusion is administered in the hospital) I am really happy. The infusion is short, only 30 minutes. Entyvio is supposed to me less immunosuppressant than Remicade because it's supposed to only affect the gut. I haven't had any problems with infections or getting sick more often than normal. I did not try Remicade as my GI thought I would do better on Entyvio, and insurance did not require me to try another cheaper drug first. I've never felt Apriso has helped me that much, but have never tried another mesalamine.

I'm so glad you found a path that works for you aguywithuc. I am always experimenting with supplements, and can largely control symptoms, even got my CRP down to 2 from 12...but my FCP and colonoscopy biopsies are stubborn.

Qing Dai was magical for me for the brief time I took it, but I became allergic to it after a few weeks and couldn't take it any more.

That's my ticket to freedom VIEW IMAGE

It does not hurt being on the strongest statin. I avoided them since 2017 because of concerns I had. Since my Total cholesterol was only 77 when the Feb/2019 blockage required a stent in the LAD the heart surgeon agreed that I could be on the 'weakest' statin. My cholesterol numbers actually got worse than no statin on the weakest statin. I asked them to switch me back, I think there is some anti-inflammatory effect of Atorvastatin. However I was on that for all of March and I was barely keeping my gut together. I changed everything when I switched back to Atorvastatin. I won't take any vitamins with Titanium Dioxide, and I try to limit consumption of C-4 which has Silicon Dioxide. I dropped all the steamed veggie meals and went back to prepared salmon from WF and grass fed burger from WH and Boars Head Italian Roast Beef, Wallaboy yogurt, eggs, butter olive oil.
Frankly the idea of submitting to the functional docs limited FODMAP diet made me determined to find a way out of this.
1-So I did go back on the strongest statin. There is some evidence this helps UC.
2-Mastic Gum overnight did something amazing, I continue 2 weeks on, 1st thing upon waking with C4, 2 weeks off
3-I went to old bottles of apple pectin, one worked the other made things worse, So I experimented in the kitchen and knew the solid pills were better, but was concerned my success hinged on breaking those down so I picked up Solgar powder and about that time due to widening diet or something else those pills began passing right through me zero magic, the Solgar powdered pectin was phenomenal. I poured it into my PLAIN Wallaby greek yogurt shakes with honey and protein isolate, but the pecting threw off the taste enough for me to graduate to the 000 giant pills. Since taking those steps I have had consistent lack of urgency, formed stools and the bloodwork 6 weeks apart is roughly the before and after time frame. CRP plummeted, LDL plummeted. My UC doc did not want to give me belladona for lingering overnight urgency without testing for CRP high sensitivity test. 1st one was 23 but low end of range was just '< 10' while this one gave an exact amount of 2.3 so she does not know how inflamed I was because most of my bloodwork is self-pay. I was surprised with the H.pylori revelation ( Mastic Gum overnight change ) that she was not curious so I included that on my labs during same visit to hospital and I do not have the anti-bodies so either Mastic Gum wiped it out or I never had it and Mastic Gum is just really helpful. I had even halted all fish oils so those are the only things I can think of that resulted in my reduced inflammation. I recently ended another Qing Dai 8 week run early, old school suflasazaine those two are hit or miss but usually work immediately or not at all. I bought plane tickets, able to travel again and will pre-load several hunder pectin and pysllium-seed capsules for the entire trip. 2-4 before every meal, about 15 per day, works out to about 100 per week. I did my Sunday load so I have 100 for this week.

Well, I was just approved by my insurance company for Entyvio. I guess I am on one of the lucky plans where you don't have to fail immunomodulators, Anti-TNF or Corticosteroids first before starting Entyvio.

TB test still needs to come back clean and I need to get hep A/B shot...but I should be starting in the next week or two. Kind of excited to try to get to "deep" remission while still somewhat concerned about side effects. We shall see.

Slightly OT i have been having difficulty getting the new shingles vaccine (shingrix) in Europe. None of my doctors have heard of it but my gp is looking into it.

I would never add another medication if I was having basically no symptoms, and I've never had a doctor who would recommend I do so.

I never took any biologics only prednisone/Uceris/Suflaz before getting on Entyvio which seemed to work for 1.5 years before failing to do anything and the doctors blame the unmanaged inflammation for the blockage that formed in the LAD. I know Entyvio had an effect because I would be tired after infusion for 1-2 days and I would get red blotch across my nose that looked almost exactly like the Lupas butterfly if I spent even one minute in the sun and no sunblock could prevent it. I was bleeding like crazy since October and I reported to my GI that it was not working we should look for antibodies and what about the next one to try. I requested Uceris again while on Atorvastatin the first time in March but it took so long to get approved that when it arrived I had just switched back to Atorvastatin and only this time there has been zero blood because I began consuming lots of apple pectin pills. I did forget to consume it before eating a large meal followed by a wallaby plain shake with honey and whey protein and with a banana. I can eat either but not together without pectin. I was feeling so much inflammation it kept me that night. I wont make that mistake again. However no blood and stools are formed and completely normal. Thus I am quite certain I have mucosal healing. Natures plus solid pectin pills, Solgar powdered pectin that I make into 100 "000" capsules plus morning wheatgrass, plant protein and psyllium seed is all that I need. Bonus is it further reduces cholesterol beyond what Atorvastatin alone can do. I have regained 20 lbs and my goal is to gain another 20 this summer. We are getting all new AC and steam humidifier today so they cutoff the water main in the house just as I sat down to eat a large grass fed beef burger with cheese and salsa on buttered toast. I was stuffed but hey no running water for at least another hour. Just a couple months ago a mere 'sip' of water would trigger the gastro-colic reflex and I would race to the bathroom. Now I have no urgency after that huge meal and can easily wait for the plumbing to be turned back on. The difference is solid and powdered apple pectin in large amounts, several grams before each mail and mastic gum. I cancelled my next Entyvio appointment as all it offers at this stage for me is more risk. I am grateful for the 1.5 years of remission it brought but it is now time to disconnect from too many doctors and too many prescriptions. I have worked hard on this disease for 13 years now and its about time I found a cheap effective solution that addresses UC and HD. Good luck with your Entyvio. The problem is most people's bodies will at some point adapt, that is why TV commercials say 'time for a change' and the companies are all trying to steal each others patients. So Glad I tried one more thing before going on Humira/Imuran or Remicade etc.

Statins reduce use of steroids in IBD
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3213287/

Atorvastatin as an anti-inflammatory treatment in IBD
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc2597264/

Pectin has protective, anti-inflammatory effects on inflammatory bowel disease
https://pubs.acs.org/doi/abs/10.1021/jf103262s

Apples Can Suppress IBD
https://www.clinicaleducation.org/resources/abstracts/apples-can-suppress-ibd/

Mastic Gum for Acute Colitis
https://www.ihaveuc.com/mastic-gum-for-acute-colitis/

Mastic gum for IBD
https://www.jillcarnahan.com/2017/12/27/cure-inflammatory-bowel-disease-ibd-without-medication/

Post Edited (aguywithuc) : 6/5/2019 4:05:34 PM (GMT-6)