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What biologic to switch to?

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Ulcerative Colitis
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Posted 12/23/2019 2:31 PM (GMT 0)
My son and I are currently trying to get his still mild flare under control, but I mentally feel better knowing that we have some options in front of us. We always had some doubts about Entyvio as it took us more than a year to get in remission with multiple other medications, etc. We did not have strong symptoms, but it was difficult to win over the lower part. Now, after 18 months in remission, mild symptoms are back. I am hesitant to give up on Entyvio as it is may be the safest biologic, but we may face this decision. I know Xelianj and Stellara were approved and insurance may approve it for my son as well (he is still 17), but my question is about Humira. We failed Remicade after less than 3 months on it and I wonder if we have a chance with Humira.
Posted 12/23/2019 2:34 PM (GMT 0)
My doctor has me on Humira, and I failed Remicade after 9 weeks. I should say Remicade failed ME. Lol.
Posted 12/23/2019 2:42 PM (GMT 0)

Sara14 said...
My doctor has me on Humira, and I failed Remicade after 9 weeks. I should say Remicade failed ME. Lol.

Hi again, Sara! I still keep my finger crossed for Humira to work for you! Would be good to know that it can work if Remicade fails as well smile
Posted 12/23/2019 2:48 PM (GMT 0)
A mild flare does not necessarily mean you've failed entyvio. Everyone flares eventually and often we can be pulled back into response with a temporary increase in meds (temporarily adding things like budesonide) without a permanent change of our maintenance meds.

Regarding which to choose, I don't know we've had successes posted here with both xeljanz and with stelara. There's few head-to-head studies saying one is better or more effective than another. It's a bit of a guessing game, try and see. We have about 65% odds of any giving biologic helping us, never a guarantee. Some will not work, while others will.

Regarding Humira, I would ask: define failed remicade? Did he have antibodies to remicade (if yes, then humira could work; if no, then forget humira)? Did he never receive any response to remicade at all (if no, forget humira; if yes, humira might help)?
Posted 12/23/2019 2:58 PM (GMT 0)

iPoop said...
A mild flare does not necessarily mean you've failed entyvio. Everyone flares eventually and often we can be pulled back into response with a temporary increase in meds (temporarily adding things like budesonide) without a permanent change of our maintenance meds.


This is what we are currently doing - trying cortenemas instead of mesalamine ones and will add budesonide soon. Insurance has not approved it yet, but I am buying to out of pocket with help of my friends in Germany sad So, hoping to get back on track.
Posted 12/23/2019 3:01 PM (GMT 0)

iPoop said...
Regarding Humira, I would ask: define failed remicade? Did he have antibodies to remicade (if yes, then humira could work; if no, then forget humira)? Did he never receive any response to remicade at all (if no, forget humira; if yes, humira might help)?

We'll need to clarify about the antibodies.. do not remember. He received a very good response initially and then for a few months. Frankly, I think Remicade alone was not enough to cope with his then serious/initial flare. Maybe if we combined it with some other meds, then it would stick. who know now...
Posted 12/23/2019 3:09 PM (GMT 0)
Xeljanz is technically not a biologic, it has a completely different mechanism of action. It's also a tablet which may be easier to manage than infusions or injections (as long as you remember to take it!)... I sort of miss having infusions because it was a chance to meet other IBDers, on the other hand I don't miss having to plan my life around not being able to travel every 8th week and having paranoia about getting a cold/virus in the days before the infusion...
Posted 12/23/2019 5:24 PM (GMT 0)

poopydoop said...
I sort of miss having infusions because it was a chance to meet other IBDers, on the other hand I don't miss having to plan my life around not being able to travel every 8th week and having paranoia about getting a cold/virus in the days before the infusion...

It's obviously more convenient. My son is just 17 now, and I am gathering all options as you never know which one is/will be approved for pediatric use. Although, I assume 17 might be an age when doctors can go with adult meds already.
Posted 12/23/2019 6:30 PM (GMT 0)
Sure, it's always good to be knowledgeable about the different options. I hope your son finds some relief soon
Posted 12/23/2019 6:50 PM (GMT 0)
Has your son tried any immunosupressents? like Imuran, 6-MP, or Methotrexate. There are lots of studies on these meds since they are very old medications (50+ years old) and are very safe for most people.

Has there been any recent stool tests for bacteria infections? It's better/easier to rule things out before switching to another slow acting medication. How about a scope? When was your son's last scope?

I've had really good success with Stelara. I was able to go off of Stelara for 6 months when I needed to have my hip replace and was able to restart it without any issues. I've probably been using Stelara for almost 5 years (this coming March). I really like it. Stelara has been my favorite biological so far and I've tried them all except for Entyvio. My GI swears by Stelara.
Posted 12/23/2019 7:21 PM (GMT 0)

ks1905 said...
Has your son tried any immunosupressents? like Imuran, 6-MP, or Methotrexate. There are lots of studies on these meds since they are very old medications (50+ years old) and are very safe for most people.

Has there been any recent stool tests for bacteria infections? It's better/easier to rule things out before switching to another slow acting medication. How about a scope? When was your son's last scope?

I've had really good success with Stelara. I was able to go off of Stelara for 6 months when I needed to have my hip replace and was able to restart it without any issues. I've probably been using Stelara for almost 5 years (this coming March). I really like it. Stelara has been my favorite biological so far and I've tried them all except for Entyvio. My GI swears by Stelara.

Thanks, Keith! We tried 6-MP 2 years ago. Worked very well for his symptoms, eliminated them. But some of his liver vitals got bad and his GI stopped it. Symptoms reappeared in a month or so after discontinuation. I do not know if we can try it again.
It's been a while since his last colonoscopy (May 2017). We may need another in 2020.

It's good to hear about your success with Stelara... My son needs some remedies and I need some hope for my emotional condition. Lots of health to you!
Posted 12/23/2019 8:21 PM (GMT 0)
I forgot to say, xeljanz works really fast. Most people feel better in the first week. I am a bit of an oddity because it took about 5 weeks before it really kicked in.
Posted 12/23/2019 8:33 PM (GMT 0)

poopydoop said...
I forgot to say, xeljanz works really fast. Most people feel better in the first week. I am a bit of an oddity because it took about 5 weeks before it really kicked in.

Thanks!
Posted 12/23/2019 8:59 PM (GMT 0)
After my lV loading dose of Stelara I noticed dramatic improvements within 48 hours.

If some people have issues with 6MP and are able to tolerate Imuran because it is broken down differently in the body. You can also try a lower does of 6MP, I had that issue and when we went to lower dose my Liver tests started doing better.

Has your son had any recent stool samples?
Posted 12/24/2019 4:47 AM (GMT 0)

ks1905 said...

If some people have issues with 6MP and are able to tolerate Imuran because it is broken down differently in the body. You can also try a lower does of 6MP, I had that issue and when we went to lower dose my Liver tests started doing better.

Has your son had any recent stool samples?

We did calprotectin test in September and it was high (300), redid it in November and it turned back 150. At the same time we did not have any visible symptoms with 300, but started to see mild ones with 150 sad The plan now is to stop the flare with some cortenemas and oral uceris. I will ask our GI what does she think about trying 6MP again and Imuran.
Posted 12/24/2019 7:37 AM (GMT 0)
Depending on where the inflammation is 300 is not that high...when I'm flaring my calprotectin is typically over 1000. Once it gets below 500 i dont have many symptoms
Posted 12/24/2019 3:39 PM (GMT 0)

poopydoop said...
Depending on where the inflammation is 300 is not that high...when I'm flaring my calprotectin is typically over 1000. Once it gets below 500 i dont have many symptoms

It was just 15 - 15 months ago, then 3 months ago it was 300, and one month ago 150. His symptoms are still mild (just red spots on TP). We are trying to get into symptoms free state, though.
Posted 12/24/2019 4:02 PM (GMT 0)

Crazydad said...

It was just 15 - 15 months ago, then 3 months ago it was 300, and one month ago 150. His symptoms are still mild (just red spots on TP). We are trying to get into symptoms free state, though.

Yep, mine also measure around 10 the last time we measured it. Was 2000 a year ago...
Posted 12/24/2019 7:37 PM (GMT 0)
My calprotectin tests don't say how high it is if it's over 500. It just says over 500. Also, I see no point in having endless calprotectin tests when you're/your son is having no symptoms. That seems more stressful than anything. Just my opinion since others told you to get regular testing even when he isnt having symptoms.
Posted 12/25/2019 4:15 AM (GMT 0)

Sara14 said...
My calprotectin tests don't say how high it is if it's over 500. It just says over 500. Also, I see no point in having endless calprotectin tests when you're/your son is having no symptoms. That seems more stressful than anything. Just my opinion since others told you to get regular testing even when he isnt having symptoms.

We do have symptoms, mild they are, but we do have them sad
Posted 12/25/2019 1:46 PM (GMT 0)
Yeah, I was referring to the future. I think someone recommended getting tested every few months regardless of symptoms.
Posted 12/28/2019 7:29 PM (GMT 0)
hi!
i heard about sometimes 'strelara' but what kind of bilogic is it?

Im a on entivio and stelara is a newer one. i dont know anything about strelara.
my Gi told me that information that in my countr the patients with crohns can be received in this year..next year maybe colitis patotients can be.
but what kind of biology is it? why is it different?
Posted 12/30/2019 1:41 PM (GMT 0)
Different biologics target different parts of the immune system's response. Some interfere with the initial battle-cry for inflammation (TNF-alpha-blockers like remicade/humira/cimzia/simponi), some interfere with the immune system's response (ANti-adhesion MADCAM1 blockers like entyvio), and some interfere with the completion of the immune attack (Stelara). Stelara inhibits interleukin (IL)-12 and IL-23 cytokines, it's working on the lymphocytes/white blood cells that attack and cause inflammation. So, it's all a matter of which molecule a biologic is designed to interfere with, at what stage of the immune attack from initial signaling, to sending the attack, to completing the attack. Stelara is at the very end of that process, stopping the WBCs from attacking.
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