Do I have to take biologics?

[moonbeam7]

Hi all,
New member here
Was diagnosed with UC 2 years ago during pregnancy with my second child.
I'm 41 now.
Since I was pregnant at symptom onset I had an unsedated sigmoidoscopy, instead of full colonoscopy, which was enough to diagnose UC. Calprotectin was so high the lab couldn't measure it
Put on mesalamine suppositories which took away 95% of my symptoms which were almost all rectal. That alone brought my calprotectin to normal.
Later I had several colonoscopies which revealed extensive pancolitis
Was put on oral mesalamine 4.8 grams a day
Followed up months later with colonoscopy which continued to show ulcerations, I think a grade 2?
My doctor recommends biologics
My question is: Do I have to? She really pushes this because I have not achieved endoscopic remission but to me, and compared to others, I have relatively mild symptoms. I continue to struggle with rectal pain and have urgency and do have diarrhea---- but once I've been up for a few hours it goes away. Once I've had 3-4x BMs for the day it goes away.
To me the side effects of biologics are much worse than what I'm already dealing with. I do not want to be immunosuppressed and worry about lymphoma.
Can I just get by this way? I worry about not following what my doctor says but I also just don't want to deal with the biologics when I am getting by without them. In some ways I feel like I'd rather just get a colectomy and be done with it all.
Any thoughts or ideas? I feel so alone because I don't know anyone else with this disease and I also don't feel like my doctor understands what it's like.... So any thoughts would be so great.
Thanks so much

 

[Bufford]

You have to decide what is right, the doctor can only make suggestions. You know your body better than anybody else. I have always believed in going with my gut so to speak. I have tried treatments in the past, Cipro Aza, and Remicade. Aza worked for a while and then went against me, and Remicade left me sick with drug induced Lupus after the third loading dose which lasted for months. All I can say is never again, but at least I tried.

 

[Lynda Lynda]

@moonbeam7 There are a lot of folks on the forum that know about a variety of bowel diseases, medications, treatments, diets, supplements, etc, based on their own diagnosis and treatment. Hopefully they will catch your message here and give you some ideas.

I agree with Bufford, everyone has to make their own choices based on their own unique situation.

I have been posting here off and on since 2006 and I have learned a lot of valuable information, ideas, opinions, etc. My doctors tell me very little, so I have to reach out and do my own research. If you research on the Internet please stay within reputable websites. Plenty of different threads here you can post your questions on.

Take Care

 

[my little penguin]

You have the right to decide
Get a second opinion to see if there are other options.
I can tell you as a mom - my kiddo was dx with crohns at age 7 (now 19)
You want this disease under control and inflammation cycle stopped .

Biologics have “potential “ side effects.
A lot of biologics were put in studies when patients had to take combo meds (6-mp, imuran aza etc) either before the biologic or with the biologic
These specific type of drugs (6-mp, imuran aza ) are now “the known” in increasing lymphoma risk
So much so pediatric Gi do not use them as much anymore but still use biologics a solo drug .

My kiddo has been on remicade ,humira and now Stelara since he was 8
Immunosuppressed is very different than those who squash their immuno system after organ transplant.
No extra colds or other infections through all of grade school middle school or high school
Just have to watch for secondary (extra infections ) after things like the flu .

Entyvio is gut specific so less of infection risk
I think it was small like 2% not sure
It works better on the large intestine

Jak inhibitors also are approved for UC and not like traditional biologic

Stelara has a 2% risk of infection only but it mainly works better on small intestine per the literature

Definitely ask around
Get a second opinion or third if your need it
Know what your options

And make sure they verify you do Not have crohns instead
More than a few folks on here had a UC dx
And came back later after surgery with crohns dx

Good luck

 

[Guerrero]

Side effects of most biologics are a bit overplayed in my opinion. Probably because their use is relatively new, and you need to put in the side effects list any symptoms seen during their studies (even if not related to the treatment).

i have been on humira and entyvio and never felt immunodepressed. Of course if you had fever for a longer time than normal, it’s better to be careful on what’s going on. The good thing is that you have routine check up, blood exams, to be sure everything is fine when under these medications.

So for me now, there is no doubt I’d choose a biologic treatment, which is innovative, target better the disease effect, and is proven to be more effective than the old chemical treatment like mesalamine that also have systemic side effects

 

[bac715]

I was very hesitant to get on biologics when my first doctor suggested them to me. The fear of the side effects terrified me. I spent over 2 years suffering, seeing multiple doctors and getting opinions, refusing to get on biologics, until the point my Crohn’s symptoms got so bad I was in debilitating pain. I was so desperate for relief, I finally agreed to start Avsola (biosimilar to remicade). Goodness, the fear I had to start it. My first infusion I started crying as the medicine went in because I was so afraid of what could happen with potential side effects or if it didn’t work, but also needing relief so badly. Within less than a day I saw significant improvement and within a month my fistula wound was healed. I am now coming up on 2 years of taking it and so far I have had no side effects and the medication is still working great. I have not seen a change in my immune system and I have not been sick, other than catching Covid last year but it was very mild. I stay up to date with flu and pneumonia vaccines just for added protection against sickness, as my doctor suggests. I cannot explain how thankful I am for it and I pray it continues to help me. That being said, I know your situation is very different than mine. But my best advice is to not wait for things to potentially get worse, if no other treatment options are working. It would be beneficial to get multiple opinions as well. Good luck and know that you’re not alone!