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Thought experiment about UC drug prioritization

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Posted 4/15/2021 4:09 PM (GMT 0)
After 5 years of remission on Entyvio, it stopped working and I moved on to Stelara. Stelara began working well for me after my first self-injection, but has since regressed (just took my 4th self-injection this week).

Since my goal is to avoid surgery and since there are a limited number of medications available, the below is how I'm thinking about prioritizing next steps - I would love your feedback:

1 - Try a Stelara reinduction: since there are limited medications, and each one is precious, I'd rather try a reinduction before giving up on Stelara. Especially since it had started working for me earlier.

2 - Try Entyvio again: Entyvio worked SO WELL for me for so long. I realize that this is very unlikely, but maybe things have changed since I failed it (it's been over 4 months since my last dose) and perhaps my body will respond to it again. I think this is worth a hail mary shot. Especially since it is gut-specific and the risk profile is so favorable.

3 - Try Humira next: I have this in front of Remicade because 1) correct me if I'm wrong, but Humira doesn't tend to be given in conjunction with 6mp/methotrexate/azathioprine...which I'd rather avoid 2) I prefer self-injections

4 - Try Remicade next: I really like having Remicade in my back pocket since it has the highest success rate. I also have it lower because of the risk profile (cancer risk, and the need for combination therapy to combat antibodies). That said, I don't remember if this is precisely the case, but is there something about introducing Humira to the body before trying Remicade that lowers the likelihood of Remicade working? Or am I making that up?

5 - Try Xelganz last: It is last because it has the worst risk profile of them all.
Posted 4/15/2021 6:50 PM (GMT 0)
First I gotta ask why avoid surgery? If you've failed stelara and entyvio (two distinct classes of biologics) then why is that off of the table? Often that's at least when you start considering it. Given, you're most certainly not out of options yet and if your symptoms are mild then more reason to delay that. I'm merely curious.

All of the biologics have blood tests for concentration of medicine and presence of Antibodies. Have you had those for stelara or entyvio when you were on it?

Maybe stelara can be given more frequently. Some have more frequent injections and it helps. The blood test would backup that need.

I wouldn't retry a biologic you previously failed (entyvio) as higher odds of antibodies, meaning side effects and less likely to have a response to it. Maybe as a last resort, but not that high on your list.

Humira and remicade are very similar, ancedotally remicade a bit stronger and more effective. Personally, I'd try remicade 1st.

Not sure why the hate on xeljanz. It's pretty safe. There's the blood lot risk, but that's much reduced by going from the 10mg loading dose to 5mg maintenance dose. Certainly everyone's risk profile is different, and maybe you have a higher risk of clotting to begin with.
Posted 4/15/2021 10:01 PM (GMT 0)

iPoop said...
First I gotta ask why avoid surgery? If you've failed stelara and entyvio (two distinct classes of biologics) then why is that off of the table? Often that's at least when you start considering it. Given, you're most certainly not out of options yet and if your symptoms are mild then more reason to delay that. I'm merely curious.

I don't know what the OPs reasons for avoiding surgery are, but for myself I want to avoid it if there is any way possible. There are so many options now and more in the pipeline. I won't let myself get into really bad shape again, but surgery is very high risk for me and I just don't want to remove a major organ if I can avoid it. It is major surgery and unless you have a bad quality of life I don't see it as an answer.

OP -- I loved Entyvio and was sad when it stopped working. I went to Humira and it never really kicked in. Had to talk my doc into letting me try Remicade, but it's working -- not as well as Entyvio, but UC doesn't really affect my life now (was in bad shape after Entyvio stopped) so I am going to try to stay with it as long as I can. I am moving my infusions to every 4 weeks this Sat. BMs about 2-3x/day (occasionally 4-5), either diarrhea or only partially formed, no blood or urgency. Doc says maybe IBS but inflammatory markers are a little elevated so we are moving the infusions closer to see if that helps.

If Remi stops working then I will likely try xeljanz next
Posted 4/16/2021 4:05 PM (GMT 0)
Have you considered options outside of modern medicine? There are so many alternative approaches available to treating UC now. Nothing is surefire but a lot of people really find relief and even remission by exploring those different avenues. Biologics don't have a great track record statistically speaking. Their failure rate after 5 years is higher than 60%. Once you've failed one biologic, statistically your chances are higher of failing the next one. So if you don't start considering alternative approaches, modern medicine will corral you into getting surgery, which nobody really wants.

If you're wary of alternative approaches, then you could at least consider the alternative modern medical approaches being researched. There are entire communities of GI doctors around the world who don't think UC is auto-immune, but is caused by other factors like dysbiosis, infection, SIBO, gut nervous system damage, etc. I enjoyed 2 years of medication free remission after getting a fecal transplant. I enjoyed another 18 months of remission from just doing low dose naltrexone therapy. These may or may not work for you, I'm just saying... there are other things out there.

If you only rely on modern medicine yet it's not working for you, you're going to lose your bowel. You should be at least supplementing with alternatives. Things like curcumin and boswellia come to mind. Have you had any gut microbiome mapping done? Thyrve and CosmosID do really good ones. You can find out which bacteria are overgrown and modify your lifestyle to starve them. Modern medicine doesn't do those investigations, they just do basic stool tests to look for parasites and obvious pathogens. They are way behind on the importance of gut mapping techniques.

Pursue your biologics schedule but I would seriously look into other alternatives if you want to avoid surgery.
Posted 4/16/2021 6:34 PM (GMT 0)
Very curious about some of these responses, thank you!

Can you clue me in on the communities of GI doctors that don't believe UC to be autoimmune? I would love to explore that route.

Curious how you got your fecal transplant since it's only approved for C Diff and not for Ulcerative Colitis?

Also curious how you got your hands on Low Dose Naltrexone? Did your GI prescribe it?

Thryve looks really awesome, have you tried it? Was their formulation really personalized enough to help you?

Thanks again!

VanJordan said...
Have you considered options outside of modern medicine? There are so many alternative approaches available to treating UC now. Nothing is surefire but a lot of people really find relief and even remission by exploring those different avenues. Biologics don't have a great track record statistically speaking. Their failure rate after 5 years is higher than 60%. Once you've failed one biologic, statistically your chances are higher of failing the next one. So if you don't start considering alternative approaches, modern medicine will corral you into getting surgery, which nobody really wants.

If you're wary of alternative approaches, then you could at least consider the alternative modern medical approaches being researched. There are entire communities of GI doctors around the world who don't think UC is auto-immune, but is caused by other factors like dysbiosis, infection, SIBO, gut nervous system damage, etc. I enjoyed 2 years of medication free remission after getting a fecal transplant. I enjoyed another 18 months of remission from just doing low dose naltrexone therapy. These may or may not work for you, I'm just saying... there are other things out there.

If you only rely on modern medicine yet it's not working for you, you're going to lose your bowel. You should be at least supplementing with alternatives. Things like curcumin and boswellia come to mind. Have you had any gut microbiome mapping done? Thyrve and CosmosID do really good ones. You can find out which bacteria are overgrown and modify your lifestyle to starve them. Modern medicine doesn't do those investigations, they just do basic stool tests to look for parasites and obvious pathogens. They are way behind on the importance of gut mapping techniques.

Pursue your biologics schedule but I would seriously look into other alternatives if you want to avoid surgery.

Posted 4/20/2021 1:14 PM (GMT 0)
@VanJordan would love your thoughts!
Posted 4/20/2021 5:34 PM (GMT 0)
I had a somewhat similar response until I started doing the injections every 4 weeks instead of 8. It has made a huge difference and I am finally mostly in remission. You will need to get insurance approval but your doctor should be able to go to bat for you. My insurance initially denied and then approved in only a few weeks after my doctor countered them. Hope you can try it.
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