I am super hesitant to take Entivyo...looking for success stories

So a brief background to start -
I’m a 38 yom, husband, father of 3, professional firefighter and paramedic. I have suffered with UC (which only effects my sigmoid/rectum) for 19 years. I am a former smoker/snuff user. My disease has occurred in a pretty predictable pattern- flare a couple of months followed by 3 years remission, flare 6 mos followed by 3 years remission, flare 9 mos followed by 3 years remission...you get the point each flare lasts progressively longer and is followed by 3 (almost 5 in one case) years of zero symptoms, restrictions, or meds. A few years back I discovered that tobacco has a direct influence on my disease. It seems that I can’t get better without it. I don’t want to be a smoker, and I have had a suspect place in my mouth biopsied. That said , my flares get so bad I’d do almost anything to make them stop. Additionally I have found that once I achieve remission I have been able to successfully quit tobacco without reflaring (I have even had a scope that showed no active flaring while not on tobacco). My wife however is very adamant that I not use tobacco and try other means. I have tried to accommodate her wishes during my last 2 flares, the last time trying 6mp when all else failed, which gave some relief but symptoms persisted and remission was never achieved until I gave in and went back to tobacco.

During my current flare I have tried the gaps diet and scd diet, I saw some success but I supplemented with tobacco, I recently quit tobacco again for her, and I might wind up in the hospital- I am anemic, lost 20lbs that I didn’t have to give, constant rectal pain, lots of lost blood.

My GI has been pushing remicade for sometime, and acts like I’m crazy for being hesitant to take it. I recently just saw someone else in his practice who treated me the same and says I need to be on entivyo. Neither dr can understand why I have reservations about rolling the dice on such potent and potentially harmful drugs. Or understand that I have hope to see another 3-5 year remission drug free as I have seen so many times in the past. Additionally neither doc has provided me with any success stories. If these drugs are such miracles I would expect to hear something like ‘ I have patients who have seen 10 year remissions on these drugs.” The literature I was given for entivyo says 40% of patients saw 1 year remission (20% had the same results with a placebo). So I just can’t see why I want to risk a brain infection, cancer, or contracting an infection from someone in the back of my squad at work. Additionally I worry about the effects that such a potent drug might play on the rest of my body over the course of the next 40 years of my life...will I wind up with liver, kidney, or cardiovascular problems due to years of infusions. And furthermore there is the cost... I have great insurance however I worry that I might become a liability to my department and cause insurance companies to drop our plan, then there is the issue of retirement and can I afford to continue on with the drug or find insurance when I retire (our health insurance industry is under constant scrutiny and no current safeguards are guaranteed to be there forever).

Part of me says just go grab some smokes and be done with it, at least smokers typically make it into their late 60s. And part of me says, “you’re being hypercritical of the medical system and worrying too much about the minority of incidents were people see harmful side effects.” Another part of me says “ you tried 6mp against your better judgement and still had to turn to tobacco to get better, what if you start entivyo and still need tobacco to heal?”

Now that you know my story, and my options...what are your stories? Who has seen amazing success with remicade or entivyo? Is it worth the risks? Has your success been better than what I described with tobacco? Any tobacco users find that they still needed tobacco on top of remi or entivyo for remission? Anyone on rem or entivyo wind up with an awful side effect or contract more illness due to lowered immune system?

Welcome to the forum, but sorry to hear you struggle with UC for so long, like many of us here do!

We've had many success stories for Remicade and Entyvio on the forum over the years. Red_34 one of the UC forum moderators has been in a remission for 8+ years on Remicade. Jub_Jub (another moderator) about 10 years on remicade? Entyvio is a bit newer and we've had some successes but it's too soon to say 8-10 years or more with it due to it's fairly recent release.

Remicade has given me the only remission I've ever known since having UC. I've been on remicade since 2012 and have yet to have a side effect from it. Prior to remicade, I was 9 months into a severe flare, steroid-dependent at 20mgs, having extreme urgency, multiple accidents, and more close calls then I could count. I was entirely off of the prednisone after 3 months of Remicade.

I believe you have misconceptions on the actual risks associated with Remicade and Entyvio. The safety profile of biologics is actually very similar to your 6MP (only rare side effects), so I am actually kind of surprised you are afraid of biologics when you are on the 6MP already. The short version is the benefits far outweigh the risks. First the odds of Remicade/entyvio helping improve your UC symptoms are about 65%. Side effects are actually quite rare with these drugs (less than 1% with the worst of them). The most concerning side effect of these medications is lymphoma which has odds of 6 in 10,000 (or 0.06 percent) assumming you are concurrently on immunomodulators (6mp/Imuran) compared to 2 in 10,000 ( or 0.02 percent) for the general population. So you're talking very long odds. What happens to those who get the lymphoma? 66% are able to get it into a remission. So the odds are even longer still. The Crohn's and Colitis Foundation of America is the source for these statistics, and give you a much deeper dive into what are the actual risks of specific side effects:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Remicade is a systematic immune-suppressant and it does increase your odds of system wide infections (sinus infections, bronchitis, UTI, etc.). Entyvio is a newer Site-Specific immunomodulator that suppresses only the gut-portion of your immune system, making it less likely you'd get the aforementioned infections. Insruance often requires you to have failed Remicade before trying entyvio though. You can ask.

There's patient copay assistance programs like RemiStart (entyvio has an equivalent program) from the medication manufacturer, that helps cover the out-of-pocket costs from copays and deductibles. Infact, you can pay $5 every 8 weeks for your remicade. /remicade.janssencarepathsavings.com/#/app/home

Everyone is always talking about how scared they are of these drugs, but no one wants surgery. If you're really that against drugs, have surgery. If you don't want surgery, then you have to accept that you will have to get lucky with some sort of alternative treatment plan, or accept that drugs will forever be a part of your life (whether it's tobacco or biologics). If you've gotten into 3-5 year remissions repeatedly without drugs, and think you can do it again, and again, and again, why would you even consider drugs for one second? I personally would imagine, eventually, you will run into a flare up that won't be fixed with whatever it is you have done in the past, and then what? It's bigger than today, or this flare up, or the next one. It's the one that hits you when you're older and less capable of healing, less of a candidate for surgery, and less tolerant of strong immune suppressing drugs, that's the one I wouldn't ever want to face. How about nicotine patches? Have you tried those? Are you on any drugs? Some people do well on the lowest level, very safe drugs for long, long periods.

Thanks for the responses and the genuine concern.

Just to clarify my rationale a bit...

Butthurt (btw I almost tried to choose that handle) I understand the dangers associated with tobacco , believe me, but also please understand that I have used tobacco for short periods of time to find lasting remission. This is not something that I would need to continue until the day I die. I understand that it is an addictive substance but I have quit several times in the past. I am also talking about a few cigs a day to get better, supplemented by dip. Once I’ve been better for some months I begin to experiment with quitting and see how my body reacts. I guess I’m just not as scared of tobacco because I’ve seen plenty of people use it and make it to retirement and beyond, those who I’ve seen suffer earlier effects typically have a host of bad habits like drinking soda, eating unhealthy, and poor hygiene. However from what I’ve seen in my job, I can tell you the sickest people are the ones who take every Rx under the sun, and dr’s just prescribe more and more.


Here are the drugs that I have tried that do not work for me:

Prednisone-doesn’t touch it, I once admitted my self to the hospital to do IV steroids for a week and I only got worse, this was while I was attempting to stay tobacco free during a flare
Cortenimas- absolutely nothing
Asacol- might as well eat candy
Rowasa- nothing
Canasa - nothing
6mp- may have showed some hope early on and then waned, that’s when I went back to tobacco , immediately got better, reduced 6mp, quit 6mp, quit tobacco again about 6-8 mos latter and had a 4.5 year remission including a scope towards the end that showed no inflammation, additionally I traveled to a third world country twice during that remission and didn’t see even a hint of gastric issues.

The reason I opted for 6mp over remicade at the time, was that my doctor presented them as equally safe/dangerous and I had the hope of possibly stopping the 6mp at some point. I ended up stopping way before my doctor was comfortable, but because of the tobacco and the fact that the 6mp was not working, I had no ill effects.

One of my major concerns is that in hopes of staying tobacco free I will give in and begin entivyo only to find that it doesn’t work or the results or less than what I would consider a good quality of life. At that point I’m stuck on entivyo, and if I still feel awful or am unable to perform my job then I will turn to tobacco anyways.

Ipoop you had some very encouraging things to say regarding the dangers of remi and entivyo, however I still have reservations about commiting to infusions for the rest of my life when the efficacy is 65%. And even if I’m in that 65% I’m not sure that I’ll see the same results that I have seen time and time again throughout the course of my disease.

Not only that but sinus infections, utis, and bronchitis are all treated with antibiotics, something that almost always destroys my bowels whether I am in remission or not.

Additionally I asked my doctor what happens when you have flares on remicade and was told that we supplement with the drugs I mentioned above, all of which were not efficacious for me. So I hate to make such a commitment for a possible temporary fix.

Jkingfrt, I am glad to hear of your success. I hope you continue to see improvement .

Thanks again everyone, I am continuing to prayerfully consider my options and I am seeking a second opinion.

Yes I’ve always been required to do stool tests every flare, and they have always been negative. I feel like for me there is an absolute direct link to my UC and tobacco ... this summer I thought my flare had run its course so I attempted to quit tobacco , it was too soon and I immediately got sick, I started dip again and issues resolved in a week. This October I quit again and my flare is back and raging worse than ever. I’m a mystery but I think I’m a mystery with a solution , just one that nobody likes

Ipoop thanks for your response. I have tried patches in the past, unfortunately it did not work . I’ve had a dr tell me that only smoking would work, however I’ve seen great things from dipping as well.

I can only tell you what I have experienced.

I think I have just been so tore up for so long right now that I need instant relief.

Ipoop- any thoughts on why my mucous thins out every three to 4.5 years?
Until that last remission (4.5 years) I flared like clockwork- 3 years late August or early September...it’s insane

Aguywithuc- thanks for your response and encouragement. You sound a lot like me. My current doctor’s seem to only be concerned with following a protocol and putting full faith in the drug companies. I often joke with my wife about their kickbacks and free vacations. They are also very put off by patients doing their own research or having suggestions. I have an appointment with another dr who I saw long ago, i recently found that he came out of retirement, he had a great bedside manner, and approached things more wholistically , and incrementally. I doubt he’s on board with tobacco , but he may have some other options for me.Fingers crossed.

Max Power- thanks for sharing your experience. I seem to read a lot of stories that are similar to yours, I guess that’s why I’m so skeptical about the drugs. I hope that something works for you soon.

I have been on Entyvio for two years this month. It did not relieve all my symptoms by itself. But I previously had loose bloody stools many times per day, and I now generally have formed stools 2-3 times per day and have not seen blood in over a year. Only side effect was a slight rash on my forehead for several months, which I think was from Entyvio, but it went away. No increase in infections. I wish I had started Entyvio sooner, as I had a couple of tough years trying other remedies. The infusions are no big deal.

Since I have seen a few smokers die of cancer, I would not consider tobacco as treatment unless there was nothing else that worked. The statistics on smoking are grim.

The small risks of side effects and serious problems with Entyvio seem well worth it. If i take it for the rest of my life, i will consider myself lucky.

Hi,
I don't blame you...I think it is always scary to move up the med latter. Just a thought...I don't know if it has been mentioned--but have you tried the nicotine patch? If not, it may be worth a try. I will say that if I had to move up the med latter, I would be most "comfortable" (and I definitely use that in quotes) with Entyvio because it is gut specific--meaning it shouldn't really impact the rest of the body such as Remi or Humira etc... so that is something to consider. In the meantime I hope you feel better and can get back to that long term remission again. Such a frustrating disease.
Be well,
B

I am about to change over to Entyvio as I have been on Humira and it seems to have stopped working for me now. Hopefully it will be with as few side effects as Humira but maybe work a little better for me.
I am a 77 year young male