Surgery vs Biologicals

Oh, I can tell I am listening to an emotional fear response throughout this thread. As you've been reading some bad stories and worried that they are the majority or will happen to you (as I said earlier, it's human nature and all).

Let me ask you this, who fills out those Comment Cards at restaurants? It's nearly all those who had an awful dining experience (maybe their server was rude, food overcooked, waited a very long time, etc etc.). It's pretty rare to get a comment card filled out saying the service and food was good or great (except the rare case where waitstaff went well over and beyond all expectations). Same thing goes with biologics, mostly those who experienced a side effect who rant online.

As far as UC medications go they all follow the same trend: ~65% of us get a response and the rest do not, and the most concerning side effects are "rare," single digit percentage odds whether you are talking mesalamine-intolerance, talking thiopurine-intolerance (extreme vomiting from azathiopurine/imuran/6mp), or talking a reaction to a biologic. Each time you try a new medication there's about the same 65% odds that it will improve your symptoms, and a very small but real risk. A treatment is a treatment regardless of what it's called and nothing gives us 100% odds of a success. One can fret about the next level of treatment and suffer in their quality of life as they delay treatment out of fear, or they can try it and see. It either works or it does not work, only trying tells you which you get. Best to try and move on quickly rather than beat yourself over what could possibly happen (and suffer for months and/or years due to a fear of trying what's next).

There's risk in doing nothing, colorectal cancer, as well and inaction (I should've could've done something earlier to spare myself getting a CRC).

But as the lymphoma risks of biologics that seem to scare folks the most. So, lets take a deeper dive into what that's all about. During the initial clinical trials of remicade, two adolescent boys got lymphoma and that was the basis of the black box warning. One important thing to note, this clinical trial like all them, allow you to concurrently continue your other medications while undergoing the trial. The two adolescents in question where also on thiopurines (azathioprine/imuran/6mp) in addition to remicade. Given, thiopurines are already known to have rare odds of getting lymphoma. So, it was most likely the thiopurines that caused the problem. If you're concerned about lymphoma risks then do not take the thiopurines concurrently with the biologics (you currently are not taking a thiopurine), especially if you are an adolescent male. That'll most likely eliminate all odds of the lymphomas.

Lets ask another question regarding the lymphomas, what happens to that 0.04% who got the lymphoma? 66% were able to get that lymphoma into a remission. So, the odds of dying from it get further still.

What are our odds of colorectal cancer, over our lifetimes as UC patients? They're 5% for CRC, much, much higher than the 0.04% odds of the lymphomas. So, doing nothing is more likely to harm you then not.

David1991 said...
When you say it is proven to prevent cancer over and above their ability to dampen down overall inflammation, are you referring to specifically colon cancer? Do you have references for that?

Probably the biggest factor reducing our chances of CRC is that (hopefully) as IBDers we are getting scoped regularly. But there are also some studies indicating that maintenance with mesalamines can be more protective than “immunomodulators, steroids, and nonsteroidal anti-inflammatory drugs”.

https://www.ncbi.nlm.nih.gov/pubmed/19705280
We compared body mass index, family history of IBD, family history of CRC, tobacco use, and cumulative and daily use of aminosalicylates, immunomodulators, folic acid, steroids, and nonsteroidal anti-inflammatory drugs.
CONCLUSIONS:
Aminosalicylate and folic acid use may decrease the risk of CRC among IBD patients.

https://www.ncbi.nlm.nih.gov/pubmed/24710620
CONCLUSION:
Our pooled results indicated that 5-aminosalicylates use was associated with a reduced risk of colorectal neoplasia in patients with ulcerative colitis, especially in the cases with a higher average daily dose of 5-aminosalicylates use. However, the chemopreventive benefit of 5-aminosalicylates use in patients with extensive ulcerative colitis was limited.

Post Edited (IamCurious) : 6/4/2019 12:56:14 PM (GMT-6)

The data for the protective against CRC of mesalamines is a bit questionable and other studies contradict it (finding none).

Ambling said...
No, you misunderstand the data. They did not compare the use of each drug. Since UC patients with mild disease maintain remission with mesalamines, there will be more of them in the pool of data showing lower rates of CRC

iPoop said...
The data for the protective against CRC of mesalamines is a bit questionable and other studies contradict it (finding none).

It is hard for me to believe that mesalamines are not considered any safer than biologics, drugs that weaken your immune system to the point of making you much more susceptible to infections and skin cancer.

If biologics are necessary because nothing else works then no more questions. But if there is a choice between maintaing remission with mesalamines vs immunosuppressants, then why choose the latter?

According to the Johns Hopkins Arthritis Center:
“ A main side effect of biologic medications is serious infection.”
https://www.hopkinsarthritis.org/arthritis-news/side-effects-of-biologic-medications/

“Not to mention the less common side effects that include:
Central nervous system symptoms such as sudden vision problems, or any new numbness or tingling.
Cardiac reactions including sudden swelling of the ankles, shortness of breath, swelling of the hands or sudden onset of heart failure which sometimes can be linked to medications aggravating previous conditions such as COPD.
Lupus-like syndrome. If a rash starts across your face and arms that gets worse when exposed to the sun, and you have new joint and body pain let your provider know immediately.”

Besides serious infections those on biologics should be ever vigilant about contracting skin cancer:

https://www.mdedge.com/rheumatology/article/80187/dermatology/skin-cancer-risk-stands-out-anti-tnf-biologics-use
”The exception was nonmelanoma skin cancer. The relative risk for this malignancy among users of all anti-TNF biologics was increased twofold.”[/i}

Cancer is one thing, but why would I choose a med that forces me to watch for infections and skin cancer if I can choose 5-ASAs for maintenance without worrying about it?

iPoop said...
Oh, I can tell I am listening to an emotional fear response throughout this thread. As you've been reading some bad stories and worried that they are the majority or will happen to you (as I said earlier, it's human nature and all).

Let me ask you this, who fills out those Comment Cards at restaurants? It's nearly all those who had an awful dining experience (maybe their server was rude, food overcooked, waited a very long time, etc etc.). It's pretty rare to get a comment card filled out saying the service and food was good or great (except the rare case where waitstaff went well over and beyond all expectations). Same thing goes with biologics, mostly those who experienced a side effect who rant online.

As far as UC medications go they all follow the same trend: ~65% of us get a response and the rest do not, and the most concerning side effects are "rare," single digit percentage odds whether you are talking mesalamine-intolerance, talking thiopurine-intolerance (extreme vomiting from azathiopurine/imuran/6mp), or talking a reaction to a biologic. Each time you try a new medication there's about the same 65% odds that it will improve your symptoms, and a very small but real risk. A treatment is a treatment regardless of what it's called and nothing gives us 100% odds of a success. One can fret about the next level of treatment and suffer in their quality of life as they delay treatment out of fear, or they can try it and see. It either works or it does not work, only trying tells you which you get. Best to try and move on quickly rather than beat yourself over what could possibly happen (and suffer for months and/or years due to a fear of trying what's next).

There's risk in doing nothing, colorectal cancer, as well and inaction (I should've could've done something earlier to spare myself getting a CRC).

But as the lymphoma risks of biologics that seem to scare folks the most. So, lets take a deeper dive into what that's all about. During the initial clinical trials of remicade, two adolescent boys got lymphoma and that was the basis of the black box warning. One important thing to note, this clinical trial like all them, allow you to concurrently continue your other medications while undergoing the trial. The two adolescents in question where also on thiopurines (azathioprine/imuran/6mp) in addition to remicade. Given, thiopurines are already known to have rare odds of getting lymphoma. So, it was most likely the thiopurines that caused the problem. If you're concerned about lymphoma risks then do not take the thiopurines concurrently with the biologics (you currently are not taking a thiopurine), especially if you are an adolescent male. That'll most likely eliminate all odds of the lymphomas.

Lets ask another question regarding the lymphomas, what happens to that 0.04% who got the lymphoma? 66% were able to get that lymphoma into a remission. So, the odds of dying from it get further still.

What are our odds of colorectal cancer, over our lifetimes as UC patients? They're 5% for CRC, much, much higher than the 0.04% odds of the lymphomas. So, doing nothing is more likely to harm you then not.

Certainly a fair point. I do wonder how much we lower our colorectal cancer risk from taking biologics.

So you had colon cancer? What happened i.e. how was it treated? I guess you're OK now.

poopydoop said...
I did some reading into the history of colitis a while ago and in the early 20th century the death rate was 30%. In the 19th century it was 60%. I sometimes think we lose sight of how serious the condition is and how important medical intervention is.

That seems surprisingly high. But either way, I've said before we are lucky to have it now vs literally any other time in human history. From 10,000 years ago until like 1900 you were basically screwed if you had IBD.

I imagine at some point in the future there will be a cure or genetic modification to prevent it, but at least it's manageable for most now.

IamCurious said...


Probably the biggest factor reducing our chances of CRC is that (hopefully) as IBDers we are getting scoped regularly. But there are also some studies indicating that maintenance with mesalamines can be more protective than “immunomodulators, steroids, and nonsteroidal anti-inflammatory drugs”.

https://www.ncbi.nlm.nih.gov/pubmed/19705280
We compared body mass index, family history of IBD, family history of CRC, tobacco use, and cumulative and daily use of aminosalicylates, immunomodulators, folic acid, steroids, and nonsteroidal anti-inflammatory drugs.
CONCLUSIONS:
Aminosalicylate and folic acid use may decrease the risk of CRC among IBD patients.

https://www.ncbi.nlm.nih.gov/pubmed/24710620
CONCLUSION:
Our pooled results indicated that 5-aminosalicylates use was associated with a reduced risk of colorectal neoplasia in patients with ulcerative colitis, especially in the cases with a higher average daily dose of 5-aminosalicylates use. However, the chemopreventive benefit of 5-aminosalicylates use in patients with extensive ulcerative colitis was limited.

If the main increase in CRC is from inflammation, I wonder why steroids and immunomodulators did not seem to decrease the risk?

Wonder what it would show if biologics were studied as well

Post Edited (David1991) : 6/5/2019 4:16:43 PM (GMT-6)

notsosicklygirl said...
David, I totally understand your apprehension and I respect that you're scared. I do however think that colon surgery is probably just as dangerous as biologics. When you really think about the potential issues with major surgery, and not just one surgery, but multiple, it has to have similar rates of complications (or higher). besides the point, that surgery is not a "cure all". Some people have good results, and some OK, nothing is perfect. Yes, it could free you of drugs, but it doesn't guarantee that. There are a lot of people who need medical treatment following surgery. I know it's pointless to expect the worst, but what if you went through all the surgeries only to need biologics anyway? That could be a real outcome. Take it easy, clear your mind, perhaps speak to some professionals and make the decision that is best for you.

You are right of course. I'm just tired of being paranoid for my health. I do like my new GI doc at Penn, seems like a very good and understanding doctor who wants to work with me. We talked about beginning Entyvio. I'll probably plan a colonosopy in the next month or two, then start on it when it inevitably shows some inflammation.

The decision is harder since I feel completely fine. If I was in chronic pain I probably would have made the jump a long time ago.

Coffeemate said...
Cancer is one thing, but why would I choose a med that forces me to watch for infections and skin cancer if I can choose 5-ASAs for maintenance without worrying about it?

poopydoop said...
I think most of us who go on biologics don't have that choice. I certainly didn't. 5 ASAs could not control my flare.

Correct, many don't have the choice.

Though now they are often using the top-down approach, starting moderate to severe cases with biologics right away as they have the chance to change the disease progression, rather than starting 5-ASAs, having it fail and the disease progress, etc....or at least that is the rational behind it

David1991 said...
Though now they are often using the top-down approach, starting moderate to severe cases with biologics right away as they have the chance to change the disease progression, rather than starting 5-ASAs, having it fail and the disease progress, etc....or at least that is the rational behind it

Nonsense. We have members here who have successfully remained in mesalamine remission for years, while many others have been known to fail on biologics.

So doctors are now advocating a top-down approach where they can charge patients $1,000-$4,000 per month to become vulnerable to, (at best infections and skin cancers, and at worst cancer, hepatitis, and lymphoma).

So much for "First Do No Harm"

Beave,

Please reread my post more carefully. I said in this thread, and in dozens of other threads, that no one questions biologics if they are necessary.

IamCurious said...
If biologics are necessary because nothing else works then no more questions. But if there is a choice between maintaining remission with mesalamines vs immunosuppressants, then why choose the latter?

Surgery should be a very last resort, though some choose it because their condition is ruining their quality of life or their UC is so severe they could die. Still, it is a serious measure. I have been following these forums for some time and the way that some non-chalantly recommend surgery kind of concerns me. Before you ever consider going the surgical route, you must weigh the cost/benefit analysis of your condition vs. the risk of surgery. You should study the statistics of colectomies, ileostomies, and j-pouches (including the stats on pouchitis). Get as informed as possible. Listen to the success stories as well as the failure stories.

The most practical factor I can tell you about biologics is that, if they work, they have diminishing returns. No biologic will last forever and it's only a matter of time before it stops working. How soon depends on your immune system and health status. The pharmaceutical industry comes out with new biologics every 1-2 years. They are slight modifications of the previous ones, meant to "refresh" the process because the immune system won't recognize the new ones. It's a game of cat and mouse.

Biologics are not ideal. They have long-term consequences, but (in my opinion) they are better than surgery as a first and second line treatment. The ethical approach to UC is to use increasingly intense treatments, starting with the most mild. If 5-ASAs work on you, then there's no need to upgrade. If they fail, then you move onto the next medication, then the next, then you take combinations (like a biologic + imuran). The end of the road is surgery.

I can tell you that in my years of going to support groups and networking with people online, I have interacted with thousands of people. I have only come across a couple of cases of people developing the rare side effects from biologics, like lymphoma. Immune rejection is more common. My body rejected Remicade within a month when I developed drug-induced lupus.

In my case, all medications failed including biologics and I decided to persevere and keep my bowel. Now I am in remission. I'm lucky... not everyone is so lucky. In my years of experience, the people who do the best managing their UC are the best at researching, trying new things, and considering alternative methods. If you only stick to natural medicine, or modern medicine, or X medicine, your chances won't be as good. You have to consider everything.

3timechamp said...
i choose surgery over biologics and its been a great decision.no meds and i have my life back

How long ago was the surgery? Did you have CD or UC? I imagine life isn't exactly the same.

IamCurious said...

Nonsense. We have members here who have successfully remained in mesalamine remission for years, while many others have been known to fail on biologics.

So doctors are now advocating a top-down approach where they can charge patients $1,000-$4,000 per month to become vulnerable to, (at best infections and skin cancers, and at worst cancer, hepatitis, and lymphoma).

So much for "First Do No Harm"

I am scared of biologics, but you seem to have irrational beliefs about them. Obviously even you know it's silly to say infections and skin cancer are "at best" type results. Clearly there are many people who do not experience these side effects.

Most people can't stay on just mesalamines for a lifetime. How old are you and how long have you had IBD? Are you in full remission from diet and supplements?

David1991 said...
Obviously even you know it's silly to say infections and skin cancer are "at best" type results. Clearly there are many people who do not experience these side effects.

If you don't believe me then please consult with your doctor. People on biologics must constantly be on guard for infections. While you are at it ask him if it best practices that once you are on a biologic then more than likely you will stay on them.