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Twenty-five years of biologicals in IBD: What´s all the hype about?

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Posted 6/27/2023 2:42 PM (GMT 0)
Well I guess this is one reason I keep looking the fix/cure/something other than immune suppression, I have grandkids.
Oldmike
https://onlinelibrary.wiley.com/doi/pdf/10.1111/joim.13345
Posted 6/27/2023 3:08 PM (GMT 0)
Wow, that is eye opening, thanks Old Mike!
Posted 6/27/2023 3:42 PM (GMT 0)
Yea, I lost faith in the drugs,back in 2000 even before the biologics except for Remicade were out. They almost destroyed my sons kidneys with cyclosporine,still needed colectomy. I think the Dr. who wrote above is telling it like it is. As far as I am concerned this is a immune mediated disease,which as he says is secondary to the cause.
Oldmike
Posted 6/27/2023 4:15 PM (GMT 0)
" no biological is likely to cure IBD by addressing the primary pathogenic mecha- nism of these barrier diseases."

So, there is a ton of information in this article, the main takeaway seems to be that biologics are not much better than traditional therapies especially in long term disease. The most striking change has been the cost of these therapies, a real gravy train for the huge pharma companies. I was on Remicade, I did not like it at all but thought it was better than Prednisone, maybe not so much.
What is not clear to me is if jak inhibitors which are not included in this study are a new breakthrough, or more of the same in terms of blocking immune response.
This is really interesting, thanks again for posting.
Posted 6/27/2023 5:17 PM (GMT 0)
We live in a time where companies are able to produce medications to help us.... Thank Goodness. Could you imagine living with this disease 100 years ago?

But I don't think we are doing enough. What's the incentive to find a cure? And if a cure is found what would the large pharmaceutical companies do--help or hinder? What if they found that a major causation was tied to some of largest industries?

Good article.

Clo
Posted 6/28/2023 2:55 PM (GMT 0)
If UC was auto immune I should still have it with 95+% colon left. Totally no symptoms.
Oldmike
Posted 6/28/2023 4:49 PM (GMT 0)
Nothing special about this article. Not telling us anything we did not already know. There are people on HW in 5-, 8- ,12- year remissions who will smile at the undertone here that biologics are really not that useful.

We already know that Entyvio is not targeted for EIMs. We already know that Stelara targets a particular pathway so if the EIM is not related to that then again we know it will not be effective. We know a lot of biologics work in only 1 in 3 cases at 24 month end points. Compared to where we were in 2005 that is pretty good efficiacy from a suite of 9+ bios and small molecules now.

I contest any claim that biologics have not impacted colectomy rates. you can always find some strange survey to back up such a claim but talk to the real people on the ground, the nurses and the patients as opposed to the academics, and most will totally disagree with this statement.

I see you also posted this on Reddit UC OldMike. I did not think you were a fan of this site. Personally I am thankful for Remicade for saving my colon and giving me a perfect quality of life for 8 - 10 years. I'd rather have this then spend all my time trying to research a solution to such an intricate problem. For a man with a hammer, every problem can sometimes look like a nail!
Posted 6/28/2023 5:12 PM (GMT 0)
Hi Damo:
Yes,sure biologics work on many no question about that.
I 'am looking for a cure,don't believe biologics are the cure.
Reddit: My main problem with Reddit is that post get buried real fast,this site is much better.
However I like reddit for car info.
But I might suspect due to reddit and facebook the traffic on this site seems to have gone down over the years.
Makes me sick,all the young people I see with the disease,on Reddit and facebook, I also see lots of failed biologics.
Oldmike
Posted 6/28/2023 6:46 PM (GMT 0)
Yes, biologics are yet another treatment and not a cure. They've have helped some when other options failed (myself included) but unfortunately they don't work for everyone, like any treatment.

There's a lot of excitement over the small molecule drugs like rinvoq. Better results than biologics. Ultimately just another treatment and not a cure.

There's a lot more tools in our UC treatment toolbox than their was a decade ago, which is a good thing. I keep hoping prognostic testing will simplify treatment sometime in the near future to guide what will work for a given patient. Cuz being new at this choosing a med is hard haha.

Yeah Facebook/reddit's algorithms are going to give a post roughly 24 hours to shine then sinks rapidly thereafter. Getting up votes gets you up near the top of feeds. Short attention spans for today's social media crowd. Mostly a young crowd there late teens, 20's and some early 30's. Few who've been at this a while, like us haha. And just hearing you can be in a remission for a long time is helpful to them.

The alternatives crowd is poorly represented beyond here to almost none existent, and alternative views are always valuable as they help some.

Post a lot and people recognize you, follow you, regularly up vote you, send you chats with questions, etc. It's like you did here a long time ago, clean slate and not recognized. Today, well, entirely different at hw.
Posted 6/30/2023 7:18 AM (GMT 0)
Nobody said biologics were the cure. But they have given millions of people a quality of life that was otherwise unattainable. And that's not just for IBD patients but people with lupus, MS, psoriasis, arthritis, etc.

If alternatives were really effective, more people would use them. Many of us spent years trying different things before resorting to immunosuppressants and I don't think any of us are happy to be immunosuppressed.

The reason why people promoting alternatives are often not well received on this forum is because they bash people taking medication and they bash science. I have no problem with people sharing what works for them. I do have a problem with them belittling others and posting pseudoscience or stuff which is just plain wrong. Old Mike is a rare exception in always being respectful in his posts.

Grateful not to have had this disease 100 years ago though. Let's not forget it was fatal to the majority before drugs became available.

Post Edited (poopydoop) : 6/29/2023 11:39:45 PM (GMT-8)

Posted 6/30/2023 1:23 PM (GMT 0)
Some pertinent info regarding the newest biologic, it's not 100% but better than current therapies:

Rinvoq’s Effectiveness in Treating Crohn’s, Ulcerative Colitis Shown in Studies
Nearly half (49%) of patients treated with a 12-week induction regimen of upadacitinib 45 mg daily achieved clinical remission per at week 12 compared to placebo (29%). In addition, a significant 46% of patients treated with upadacitinib 45 mg achieved endoscopic response at week 12 compared to the placebo group (12%).

Notably, steroid-free clinical remission was achieved at week 52 among all patients and those on steroids at entry in maintenance, Edward V. Loftus, Jr., MD, gastroenterologist at Mayo Clinic College of Medicine and Science, told ACG attendees.2

In addition, no new safety risks observed compared to the known safety profile of upadacitinib.
Posted 6/30/2023 2:19 PM (GMT 0)
Might depend on your perspective.
My perspective is from 43 years of studying the medical literature on this disease,
and watching my son have his colon ripped out. This of course in addition to my own surgery.
Meds and biologics are great,and provide symptomatic remission,and possibly in some cases histological
remission.
My perspective has shifted,from alternative fixes,which never actually worked for me.
To what is causal. At this point I don't consider a supplement/diet that might address a causal
mechanism, as alternative.
Since I don't seem to have IBD anymore, nor diversion colitis my perspective on the disease has changed
from yea sure this is autoimmune,to immune mediated. Since I only had a few inches of rectum cut out why don't I have UC in the rest of my colon any more, if it was auto immune. Rectal biopsy consistent with severe UC at time of surgery. Cat scan with contrast after surgery, colon was good. The reason I still try and figure things out.
Grandkids.
Oldmike
Posted 6/30/2023 2:27 PM (GMT 0)
Other peoples perspectives will be to regard much of the negativity of biologics as complete nonsence. There are scientists who have Nobel prizes based on drug therapy of 40% efficiacy yet we hear so much about bios and small molecules as being "only 1 in 3", "only 30%". Not everyone has the desire, time and circumstances to spend endless hours researching out ideas about whether UC is technically this or that. Most people want to get on with their lives, raise kids, pay the mortgage live every day of their lives. Good for them if they can find a viable solution with bio and small molecules.

If we gave bios and small molecules the same sort of praise as we give 5ASA rectal meds on here it might help dramatically especially for the few newbies who do still use HW.
Posted 6/30/2023 2:36 PM (GMT 0)
It's a frustrating illness with a lot of trial-and-error, no prognostic testing to identify your versus my solution. No therapy, whether mesalamine, azathiopurine or remicade is perfect and going to work for everyone.

But yeah autoimmune or strongly immune system mediated seems like the most likely driver to an UC.

30-40 percent remission rates with biologics can at face value sound terrible. Generally the clinical trials are short term due to limited funding and the sheer expense of research. Long term followups are rare. Clinical trials tend to bias toward more severe cases. Given more time, and a more average patient base (especially tnf-alpha naive, 1st biologic patients) to respond a lot better than those in the clinical studies. As an example it took nearly a year for me to attain a full remission. And most gasteroenterologists generally see this within their clinical practices.

It also cannot be forgotten that about 65 percent have a positive response and improvement in their symptoms on biological meds. It may greatly help symptoms but not quite nudge one into a remission. And combination therapy (e.g., remicade plus azathiopurine, and even multiple biological meds at once) might achieve a remission over time.
Posted 6/30/2023 4:42 PM (GMT 0)
I have a little different perspective on cure vs treatment. My father was type 1 diabetic (also considered an autoimmune disease) so I grew up seeing the effects of that disease. They have never found a cure for diabetes or the exact mechanism of cause. I think the general public think of insulin shots as the cure but it’s not. Daily life with a diabetic on insulin is not all hunky-dory, take my shot and I’m good. There’s insulin reactions and constant worry about what can and cannot be eaten.

I don’t know what my point is. I think it’s good to wish for a cure but realistically the human body is an incredibly complex organism that science has a hard time deciphering, especially given that each individual operates a little differently.

All that being said I really appreciate reading all of mikes research. I don’t think we should ever stop hoping there is a cure found someday or a cause that future sufferers can avoid.
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