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I’m sick and tired of this!

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Ulcerative Colitis
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Posted 4/10/2019 7:25 PM (GMT 0)
Right...

But not about what you probably think (my illness).

I’ve just realised that I’ve been on Entyvio for ... wait for it ... two years.

Now that shocked me! Why?

Because I’ve been saying the entire time that I’m really not convinced I’ve noticed ANY changes as a result of being on it! (I genuinely believe it has almost definitely done NOTHING).

Any time I’ve thought this way and spoken to people, the response has been “wait and see”...”give it time”...”but it has to be doing something, because you’re doing better than the times you were hospitalised!”

Yes I am - but I’m just NOT sure the Entyvio itself has done anything. I still have daily symptoms of UC - not terrible but bad enough to be symptoms (going multiple times a day often not formed with urgency).

And I’m pretty sure I started at least one other drug at the same time I last left hospital, and had been on high dose steroids for a few days.

So this is a bit of a rant. Two years of a biologic drug that I’ve questioned the efficacy of for me personally the whole time I’ve been on it. And I am concerned about, what if there are side effects? I’ve not noticed any. But what about in 5 years? 10 years? 20 years? 40 years? Beyond that? (I’m young!)

I know I won’t be on it much longer, I’m sure. But what I’m saying is, even if I come off it now, who knows what the long term side effects could be. Think about steroids. When they were first introduced for long term use, you didn’t notice side effects at first. Decades later and your bones are falling apart and so on!

Sorry - this is a rant and a vent on my part. To be honest I don’t feel good at all about this. Maybe I’m just being a bit of a hypochondriac. But still I will make sure I come off it. In the meantime, I’m rather shocked this has happened!

Please pitch in. Give your advice, stories and let’s discuss this. Tell me I’m crazy and overreacting enormously, or actually that this situation is crazy. Let me know what you think! smile

Ah, that felt better. (Sorry I had to vent XD )
Posted 4/10/2019 8:24 PM (GMT 0)
Sometimes we all have to vent, and that does indeed feel better smile

Surprised you've been on Entyvio that long, if you think it's not working. I'd have called it quits after 14-weeks, if I was unsure. I forget everything you've tried, but xeljanz is out there as are the remicade/humira if you haven't tried those yet.

Remicade is out best indicator of the long-term effectiveness and side effects of a biologic, since it came out first, in 1999 (20 years ago) with FDA approval and was in clinical trials for multiple years prior. Generally no long term issues with it. You're talking low risk stuff that's documented on the package insert.

Entyvio is a large molecule, monoclonal antibody as is remicade. They are similar in most regards, but differ in what part of the immune process is targeted. I would not expect a much different long term, safety profile with it. In fact it should be safer and better, as it only suppresses the gut side of the immune system.
Posted 4/10/2019 9:01 PM (GMT 0)
I gave entyvio 16 weeks. My dr was already pushing me to quit with it for several weeks before that, but i wanted to have the 4th infusion to be sure. A couple on this forum suggested waiting a bit longer. One of the deciding factors was not only my symptoms (i was crying most evenings because of the pain, although i couldn't remember what life was like without it) - but my calprotectin did not budge below ~1000 from start to finish.. I have no regrets since switching to xeljanz. My current situation is still not a remission but much better than before. You don't have to suffer the rest of your life like this, there are options (including surgery).
Posted 4/10/2019 10:41 PM (GMT 0)
I spent many years in denial, not willing to admit that my RX meds were doing very little to help my very bad symptoms. I would tell my GI's my symptoms and then they would change to something new then 6 months later try another RX. Nothing worked for me that they had to offer. I never went on biologics, offered by my GI's but my decision was no. Ultimately my remission was hard-ass diet modification, after trying it several times previously and getting some minor improvement. I also tried almost every supplement people mentioned here, some helped most did not. My remission may be luck but I worked really hard to get here.

You have to be the one who says "this is not working, my life as it is is not acceptable" because a GI will (generally) not. I broke down crying in my GI's office once and she fled the room rather than deal with it.

Go talk to a surgeon, maybe that will give you insight on another possibility.
Posted 4/11/2019 12:30 AM (GMT 0)
Hi,
Been in a flare for 2 years now and am still currently trying to find medicine that works.

Tried humira and entivyo for 6 months each and believed that it wasn't working. Same thing everyone told me I had to wait and see.

Point is only you know your body...u know if it is time to move on. I'll be starting Xeljanz shortly so fingers crossed!
Posted 4/11/2019 1:05 AM (GMT 0)
After prednisone, remicade, sulfasalazine and tacrolimus being unable to snap me into remission or help me at all, my doctors put me on Entyvio. It kind of had me all over the place. Certainly took a long time. While I'm not in remission, my inflammation went from being severe and life threatening, to just slight, at the moment. However, it took a year of receiving the infusion EVERY FOUR WEEKS...

Next week they'll confirm their plan to determine my remission potential...I feel Entyvio has helped me but in SUCH a slow manner.
Posted 4/11/2019 11:55 AM (GMT 0)
I don't understand what you're frustrated about if it's not your illness? I'd be pissed to still have symptoms but no one is forcing you to be on entyvio......if you don't want to be on entyvio then it's your choice to not be on it.....get off it and find something else.
Posted 4/11/2019 12:55 PM (GMT 0)
A significant number of IBD patients have GI symptoms even after inflammation is gone. Entyevo will not touch those symptoms. So, nail down the inflammation. If it is gone (maybe confirmed by scope and biopsy), then you can continue Entyevo or try and see if mesalamine can manage to keep inflammation away. But, you have to find something else to address the GI symptoms.

IF inflammation is not gone, you can try some other med to address inflammation. Hopefully all GI symptoms will go away when inflammation goes.

If it is gone, and it comes back, then I would get back on Entyevo.

Bull101 is right, nobody is forcing you to take the drug. ... and no drug promises there wound be 30% to 40% of people who do not respond.

good luck
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