Should I be taking a biologic?

[saintyves]

Hi everyone.

I was diagnosed with Crohn's around 4 years ago when I was 16, and I've been fortunate in that I've had mild or at worst moderate symptoms that have more or less been in control for the past few years and most of my symptoms have been controlled with Uceris. The only significant event I've experienced is when I was in a hospital for almost a week with severe diarrhea and nausea (I couldn't retain anything I ate, not even water) after which I was on a liquid diet for about a month or two. I have diarrhea sometimes but I rarely feel pain, I've never lost weight, and I feel like a normal, healthy person 98% of the time.

However, ever since I was diagnosed my GI physician (I've had the same one since I started showing symptoms) has been very insistent that I start taking a biologic of some sort like Humira or Remicade. I've always been a bit hesitant to accept the suggestion because one, my symptoms seem to be rather under control and I have flare ups maybe twice a year at the most and two, I'm someone who gets infections rather easily and it seems like something that would just make my immune system even weaker. I've read that the risks are low but I feel as if it's a bit unjustified/overkill in my case (I may also be influenced by my mother who has always been something of a hypochondriac and seems to think taking a biologic is some sort of death sentence...)

Am I being unnecessarily stubborn?

 

[ronroush7]

Hi. I would tend to go with your doctor .

 

[my little penguin]

Going to tag a lot of the Moms
Of older adult “kids”
Maya142
Crohnsinct
Jmrogers
Clash
Tesscom

 

[Guerrero]

hi santyves, i was in the same case as yours, mild symptoms for years, felt like I was not sick, and I refused to start biologics, and stayed on azatioprin instead... (possible side effects scared me, and my family was scared too)

unfortunately i built strictures and had to have surgery, and now i have other strictures..
sometimes i regret i didnt start biologics before as it could have spare me strictures and bowel damages...

I went on humira then, and didnt work great. I'm now on entyvio, and it seems to be helping.

 

[crohnsinct]

Hi there! I think it is great that you are reaching out for advice and welcome to our little group.

I have two daughters with Crohn's. My younger daughter has pretty mild disease so we started treating with EEN instead of steroids to get the inflammation quickly under control and Methotrexate, an immunomodultor to maintain remission. Mtx is a mid level drug as far as the pyramid goes. Even though she had mild disease her inflammation was never totally controlled as evidenced by scopes and fecal calprotectin levels. We had to move to Remicade. Honestly I was shocked that we had to make that disease because she had "mild" disease. However, since that time she has had normal biomarkers, feels great and has been growing and gaining weight like a regular kid. My point being your body doesn't always play by the rules. It doesn't know it's disease is mild so it is supposed to respond to mild drugs.

My older daughter had no symptoms up until her first flare. Diarrhea for two weeks. We finally got to a GI and she was admitted to the hospital in ICU. Her colon was chop meat, she needed a blood transfusion, she was malnourished, her organs were shutting down and she had infection throughout her body. Up until the day her diarrhea started we had no clue anything was going on. My point here is you can have pretty asymptomatic disease but it could be doing lots of silent damage.

Uceris is a steroid. It is not absorbed systemically as much as say prednisone but it is still a steroid. It is about 50% effective. It is used primarily for UC or Crohn's confined to the colon. Not as effective for small bowel disease. Long term use of steroids, even Uceris is not typically advised.

One flare a year does not mean you have good control of your disease. Each time your body inflames and heals it causes scar tissue. Do this enough times and you could create a stricture that may need surgical intervention. That is a very real and not so rare risk of underrated disease.

Have you have regular surveillance scopes? How are those results? How are your biomarkers? Fecal Calprotectin?

The safety profile with Remicade and Humor is very good. Side effects are pretty rare and any that you do get are pretty manageable. My older daughter got psoriasis from Remicade. My girls have had no increase in infections etc. In fact they are the healthiest people in our house. They were on a mission trip with their youth group, sleeping in the same room with 18 other kids. Half the kids came back with mono but not my girls. I could totally understand your concern about infections given your history. I would address this with your GI and see what they have to say.

Under treated disease has higher risks than the biologics. I already mentioned the. risk of surgery. There is also a higher risk of colon cancer. The more inflammation you have the higher your risk. You really want to control the inflammation as much as possible.

If you really want, you could try a mid level immunomodulator like Methotrexate but it is also only about 50% effective and has a less attractive risk profile than the biologics.

Good luck with your decision. Let us know how it goes!

 

[afoxscreamitout]

I just got diagnosed with Crohn's in April 2017 after a bad hospital visit. I was in really bad shape when I got there, lost a lot of blood and fluids from horrific diarrhea, and they put me on Remicade.

The unfortunate thing about Remicade is that it is a very heavy hitting drug, and you have to really analyze what your quality of life is whether you take it or you don't. I went off the Remicade in August because I didn't think my Crohn's was as severe as they thought it was, and they didn't explain to me the way the drug works. I had a good 4.5 months without any flare-ups or symptoms, but I recently relapsed and have been in a flare-up since Nov 26th, 2017.

This flare-up opened my eyes a lot because although I wouldn't have said I was a severe Crohn's candidate, I realize now that regardless, anytime I get a flare, my entire intestinal tract is on the fritz and I am killing parts of my body each time I suffer from a flare-up.

Fortunately I respond well to Remicade, and am back on it because I decided my life should not be dictated by a disease. It took rock bottom and unbearable amounts of pain for me to realize that in the end I want quality of life over quantity and for me Remicade is the path I chose to help with my quality of life.

I would recommend really analyzing how severe your Crohn's is, what the doctor won't tell you off the bat is that with Remicade your body will eventually reject it. Because Remicade contains a mix of rat and human antibodies your body will eventually notice the rat antibodies and find it to be a foreign object, and in turn will send out signals to destroy them.

If you can hold out on using the Remicade until your symptoms get more severe, I would say that your body and mind will benefit a lot from that. But if you have the slightest chance of your flare's getting worse or leading to fistulas and such, I would really look into all the details of the Remicade treatment with your doctor.

Remicade is insanely expensive too. I say weigh your options, if I could deal with my Crohn's flares without Remicade, I would 150% do it, but unfortunately my body hates me and I need to go with the heavy hitter drugs for now.

Hope that helped.

 

[my little penguin]

Humira is humianized protein
Ds was on it for years even with mild disease
No extra anything in elementary school
He was dx at age 7.
The thing about biologics is the earlier they are used in the disease course the risk of surgery goes down

As far as using uceris on a regular basis and flares
A healthy intestine is flexible like a garden hose
Woth crohns
Have you had a cut on your hand
The skiin gets red /a scab forms and it heals
With Crohns
The body is constantly trying to heal something that isn’t broken
The intestine gets red and forms a scab
The scab is hard so thicker scar tissue forms there
Eventually your “garden hose “ turns into ridgid pvc pipe
That is very narrow
Sometimes that means fistulas form (thin body made new intestine to go around the thick pvc pipe) the fistulas are weak and can rupture at any minute .

Or obstructions form
Or balloned intestine duevto pressure around strictures
These all occur with Crohns
Especially under treated Crohns


On to steriods
When you use steriods including uceris
The bodies adrenal gland goes to sleep
The adrenal gland keeps every important organ In the body functioning well by sending out cortisol
When you stop steriods
Your adrenal gland sometimes does not wake up
Which means daily doses of steroids plus stress doses when you have a scope or get sick
Steriods also weaken your bones
Increase chances of cataeracts
Glaucoma
Diabetes
Etc....

Before they only had steriods to treat Crohns (not took long ago either )
No other drugs to chose from
Those folks now have vision issues /brittle bones /diabetes

My child is fortunate to have drugs to chose from
And thankfully has done very well on biologics
Intestine looked normal perfectly healed last check

He still has a garden hose and I want to keep it that way as long as possible .
It’s been 7 years on biologics and no issues


Good luck

 

[Maya142]

Hi and welcome.
I have two older "kids" - now young adults. The younger one has arthritis and Crohn's. Her arthritis is severe but her Crohn's has been relatively mild. However, since she was already on biologics for her arthritis when she was diagnosed with Crohn's (at 16), we switched to a biologic that would work for both her Crohn's and arthritis (Remicade). She was also on Methotrexate at the time.

At diagnosis, she had ulcers in her colon and a red and inflamed and bleeding terminal ileum. Biopsies showed inflammation and granulomas.

It took 3-4 infusions of Remicade, but after that, she started feeling a whole lot better. Her abdominal pain disappeared. She stopped having diarrhea and constipation. She had a lot more energy.

8 months after starting Remicade, we did scopes. Her colon looked absolutely perfect - all the ulcers had healed and were gone. Her TI was still mildly inflamed but MUCH better. We never regretted treating her aggressively because it has prevented her Crohn's from becoming severe.

With her arthritis, she was under-treated and now has permanent joint damage in several joints. Which means she is facing surgeries and will always be in pain. She had two surgeries this year and will probably need one in the summer. As you can imagine, this is very hard for her - she just wnats to be a normal college student.

The same can happen with IBD if it is under-treated - you will have to deal with complications like strictures, abscesses and fistulae. You may need surgery. Biologics are used early in the disease to prevent those complications.

I also want to point out that Uceris is a steroid and is not meant to be a long-term medication. It may not be as bad as Prednisone, but it is still a steroid. My daughter was on Entocort for over a year - which is also budesonide, and is basically the same as Uceris except it targets the terminal ileum and not colon. She was also on Prednisone a LOT for the past 6 years because her arthritis has been so difficult to control.

She is now dealing with steroid side effects - Cushing's syndrome (she gained 25 lbs and has a puffy face and dark purple/red stretch marks on her belly). Adrenal insufficiency, which means her adrenal glands are no longer functioning because her body was so used to getting steroids from an outside source. Adrenal insufficiency can be fatal if you go into adrenal crisis. Low bone density.

There are also plenty of other side effects - glaucoma, diabetes, increased risk of infection.

Steroids are definitely very effective but they are really not meant for long-term and are very risky if used for years.

Have you considered a second opinion? I see you are in Philadelphia - do you go to CHOP or Penn? There are some great GIs at both hospitals.

 

[Jmrogers4]

Best way it's been described to me is we only have so much intestine and if scar tissue builds up the only way to fix it is to remove it. Our goal has been to avoid surgery as long as possible and a medicine that provided my son with complete remission is the best way to do that. Azathioprine wasn't strong enough and even though symptoms were mild it wasn't enough to control all the inflammation and he experienced some growth and development delays because of that. (Remicade fixed those).
We did a Prometheus Prognostic test many years ago and he at that point had 90% chance of surgery by age 20, he is 18 going on 19 and no surgeries so far. He started remicade at 14 1/2 and the discussion at that time was let's give this a try before doing a surgery at TI, so glad it brought complete remission and hoping for many more years.

 

[shamrock15]

Some really good advice here, and a few differing points of view too.

My crohn's spans from the time before remicade was available until today. I was diagnosed in '88, first operation in '94, another in '00, '04, and two in '06 and one in '07. You can see the frequency was reducing, and honestly I never was better after the '04 one. Remicade started for me in '08 and I am still on it. Since then, not a single operation. Remicade gave me my life back. Because of how late I have gotten it and the bowel I have lost, I have water retention issues, a ruptured bowel that threatened my life, blood poisoning that nearly killed me, kidney stones, had some skin cancer, and arthritis in my knees, wrists and elbows, and a shoulder that never properly healed from dislocations. Even with that, I can still cycle 40 km (25 miles) in about an hour and a half now. I am now in pretty good shape, and considering my age (nearing 50), probably in better shape than many who have no health issues.

That laundry list of health problems would likely not be present if remicade were available to me earlier. With rare exceptions, what do you have to lose trying remicade? Cash. What do you have to possibly lose by not taking it? Check my list. Despite all that, I consider myself really fortunate. I have a wife, daughter, very good job as a teacher, and all of it wouldn't be here for me without remicade (or an equivalent).

 

[crohnsinct]

I have been thinking about your situation and wanted to throw something out there. If you are convinced you ned to move to a biologic but are still afraid of infections, may I suggest asking your GI about Entyvio. Entyvio is supposed to be a better option for immunocompromised patients.

 

[my little penguin]

Stelera as well
Stelara only has a 1-2% infection risk and NO black box warning

Our pediatric GI will not use entyvio on his pediatric patients woth crohns
Says they only use it on UC kids now
Since it has not been very effective in their Crohns kids

But kids are not adults though