Next option-Votes?

Hi Hugo18, could you list all of the JAK inhibitors and biologics you've tried before, in order?

I'm going from Humira (biologic) to Xeljanz (Jak inhibitor), then if Xeljanz doesn't work I'll probably try Entyvio or Stelara (back to biologics), so it sounds like I'm a step behind you in the quest for the next drug that works.

I think my gastro is switching me to Xeljanz after Humira because I've never tried a JAK inhibitor before. If it doesn't work I've got a few biologics to try before going down the road of surgery.

I've been on Cyclosporine once before. It worked within a couple of days, but it's strong stuff and I had very shaky hands.

Post Edited (UCyousee) : 5/9/2021 6:13:31 AM (GMT-6)

I've just come across an interesting article about returning to a biologic that worked in the past:

https://www.gastroenterologyandhepatology.net/archives/november-2019/restarting-biologic-agents-after-a-drug-holiday/

I didn't know that thinking had moved on from the old advice that once you stop a biologic you can't return to it due to risk of producing antibodies.

In the article there's an interesting explanation of a possible reason for why we become unresponsive to biologics after a while:

DR: The reason that doctors can now have discussions with patients about cycling back to a treatment that was tried previously is because of the theoretical concept that the inflammatory pathways in an active IBD patient may change based on the treatment and time. For example, if a doctor treats a patient with an anti–tumor necrosis factor (TNF) drug such as infliximab, and the patient responds and does well initially but then loses response, the presumption is that his or her inflammation may have been driven by TNF, and, therefore, the anti-TNF drug treats it. However, if the loss of response is not due to antidrug antibodies, it may be due to a change in mechanism, or what some doctors call mechanistic escape. That principle, in theory, means that the patient had a different inflammatory pathway become activated. This may occur because the human body has many collateral and backup systems. If one inflammatory pathway is blocked, and whatever is driving the patient’s Crohn’s disease or ulcerative colitis has not been addressed, the body will try to find a new pathway to keep driving the disease forward. When a new pathway becomes dominant, the patient loses response to the current treatment and the doctor tries a different therapy, and perhaps that works for a while, but at some point, the patient may lose response to the new therapy.

What we have started to see is that doctors can cycle back to the drug that the patient lost response to in the first place. Researchers have now demonstrated that this can be done safely in many patients as long as the loss of response was not due to antidrug antibodies. That is the one exception where it is not possible to go back to the original drug.

Remicade was LOR that had nothing to do with anti-bodies.

Xeljanz was similar. Both put me in perfect remission but the disease eventually overrode the mechanism.

Interestingly most of the specialists are more concerned about being steroid refractive then a LOR to the various biologics. I think Stelera makes sense but it would sure be nice to find a bridge over the next few weeks. I am also worried the severity of the disease will inhibit the new medication.

If it's rectal, are you using anything topical? I suppose trying humira would be easy enough but I'm not too hopeful it will work considering your past. I know we all want to try everything so we know we've covered all of the bases because, really, there aren't 100 options. The problem is that everything you try takes a long time to verify whether it's working. Of you're not responding, you can lose a good amount of time figuring it out, getting tests, and adjusting doses. I feel like each failed med is 6 months plus. With that said, is probably try jumping to something with a different mechanism. Humira would still be an option if needed.

I agree with the doctors, getting off steroids is essential. Steroids can cause long-term irreversible damage to your health.

There are also some trials coming down the pike that you could start looking into if you don't have luck with anything you've been offered. Try not to stress.

Also, get stool tests to ensure there's nothing pathogenic causing additional difficulty in treating your condition.

Are you on delzicol or anything similar? Even uceris is an upgrade from pred of it works for you... Have you tried aza or mercaptopurine?

For what it’s worth,

My husband started with Remicade and it worked, but never got full remission. He developed antibodies to it fairly early on.

Then tried Humira which did nothing. Same with Entyvio which did nothing. Then you know the story with the Xeljanz which worked immediately. He was also on 6MP and Asacol which seemed to do nothing. Throughout he was on steroids which was awful but kept him out of hospital and moderately functional. Are you sure that steroids won’t work at all? As bad as they are they can be a useful bridge to see what works next. He did develop osteoporosis as a result of being on steroids for 4 years but that is being managed now.

If it’s a coin toss, which is what it sounds like it might be, I would try a mechanism untried and go the Stelara route. No downside really. There are no right or wrong answers and I hope you can get some relief in the interim.

My GI determined I go Stelera and got in yesterday for my first infusion.

Anyone with experience with Stelera have a time frame when they felt some benefit from it? My GI says it isn’t as fast as remicade generally but faster then entyvio.

Can anyone tell me the specifics of their first dose of Stelera? Is it infusion, or injection? Was it done at Dr's office, etc...?

johnj said...
Can anyone tell me the specifics of their first dose of Stelera? Is it infusion, or injection? Was it done at Dr's office, etc...?

The first dose is an infusion. I had mine done at an infusion center. Thereafter, it's self-injections, typically once every 8 weeks.

EveryStone: Steroid-refractive means you don't respond to steroids.

Why am I seeing red when I am not even on Prednisone?

ahh these kind biologys ( humire
nfusions terrible low rate working medicines...i heard from my dictor 30% of the patient push into remission at 30% working a little and at rest of patient not working. ok they are better than nothing but terrible low succesrate they have.

I don’t think they are lame. 2 worked well for me. Remicade and Xeljanz.
What is lame is the disease! How can it override the medicine is fascinating