Biologics for mild/moderate uc

I've been flaring for the better part of the past 3 years. There have been periods of reduced symptoms (particularly while on pred), but I'm not sure I've been in remission at all since 3 years ago. I've had 3 colonoscopies within that time, 2 of which have shown mild to moderate inflammation. In January 2019, I had patchy inflammation including moderate inflammation in the ascending colon and mod-severe inflammation in the sigmoid. The most recent colonoscopy in July 2019, however, showed mild-moderate inflammation in rectum/sigmoid only. Nevertheless, I have not been able to get rid of it.

I've tried maxing out 5asa meds (4g salofalk enema and 4800mg asacol), cortifoam, cortiment, Imuran (resulted in nausea/vomitting), and methotrexate. The only thing that helps is prednisone, but whenever I taper off of it, my symptoms return, regardless of what maintenance med I'm on.

My symptoms aren't awful compared to what others are dealing with, but they're still there. Blood, cramping, mucous, tenesmus, some urgency, 3-6x/day - but some of those are just mucous or bloody mucous.

My GI is suggesting biologics (Remicade, specifically) and going back up to 40mg of pred (I'm currently at 20mg - was at 15mg and started flaring, then went back up to 20mg but still flaring). Should I make the jump to biologics even though my symptoms and inflammation are mild? I'm so fed up with the ups and downs of this disease and feel like I'm giving up somehow by moving to biologics.

Yes, I would elevate. I too struggled with years of mild symptoms and my new IBD GI doc wanted me to start Entyvio and I don't regret it.

You don’t want to stay on Prednisone and you’re not making any progress and improving.

I have a new hip because of taking steroids for too long. See my thread in my signature.

Remicade is the oldest and most studied biological available, I would start there first. It also has some of the best statistics for UC biologicals.

Biologics are safer than prednisone, so I would say it is definitely time to escalate treatment.

I would try biologics in your situation.

Have you changed your diet? Do you eat gluten, dairy and sugars? I would definitely cut out all of that for 2 months and watch if/what changes and report back.

Also do you take any probiotics? Our western medicine is great for treating the symptoms but not so good for dealing with root cause. Root cause is unbalanced microbiota in our guts, so we should work to restore balance and hopefully then completely heal or at least lower the symptoms.

Kind regards!

noodlesnoodles said...
Biologics are safer than prednisone, so I would say it is definitely time to escalate treatment.

I read on many places that biologics have more dangerous side effects that other therapies. Can you share any source materials or studies that show that biologics are safer than prednisone?

supergut said...
All who have been on Remicade or other biologics - did you go trough screening for tuberculosis, hepatitis and other viruses before taking Remicade? Did you get shots for hepatitis B?

My doctor sent me to take shots just in case if I need to be given biologic meds.

Also is Humira also a good option to Remicade, or you would all say to ask only for Remicade if it comes to that?

Yes, getting tested for TB and hepatitis is normal protocol before starting on a biologic. I didn't get any shots. I already had my hepatitis B shots years ago though.

My doctors told me I could choose Remicade or Humira. Remicade has been shown to be slightly more effective. It's kind of a personal preference though if you want something you can administer yourself at home or not.

Biologics have fewer side effects than prednisone. Prednisone can have devastating long-term side effects which is why our doctors don't keep us on it long-term.

supergut said...
Have you changed your diet? Do you eat gluten, dairy and sugars? I would definitely cut out all of that for 2 months and watch if/what changes and report back.

Also do you take any probiotics? Our western medicine is great for treating the symptoms but not so good for dealing with root cause. Root cause is unbalanced microbiota in our guts, so we should work to restore balance and hopefully then completely heal or at least lower the symptoms.

Kind regards!

I've tried adjusting my diet. I tried eliminating a bunch of stuff a couple years ago for a couple months without any changes. It was mostly a low fodmap diet with a few extra things eliminated. This really only resulted in added stress. I like to eat and I eat healthy but meticulously keeping track of/restricting what I eat is not good for my mental health. There are certain foods that I mostly avoid when I'm flaring that consistently seem to make symptoms worse (alcohol, dairy, fried/fatty foods, raw veggies) but that doesn't stop the flare, just makes symptoms more bearable.

I tried probiotics for a while but eventually got out of the habit. I guess it's hard to stay motivated to continue with supplements when you don't see any clear improvements from them. I should probably give it a go again, now that you mention it.

Humira didn't work very well for me, but remicade is working pretty well. We had to increase the dosage of remicade, but I am very close to remission at this point so I am very hopeful. Last year at this time I had to have a blood transfusion and several iron infusions, February of this year I had to go on 60 mg of pred just to be able to leave the house, and now I have lots of energy, only have 2-3 BMs a day (my normal). My only remaining symptoms are a little blood every few days and stools are not always perfectly formed -- though they are always formed now.

Humira was easier, but remicade is what has given me my life back

I had to get tested for TB, a chest x-ray, get blood work to check for hepatitis, and get a shingles vaccine before I started on Entyvio. (I was on Entyvio for about 2 years before Humira. LOVED Entyvio, but sadly it stopped working for me)

I have had great results with the Biologic Remicade over the last 2 years. I wish I had started it earlier before my symptoms and u/c became severe and progressed to pancolitis. .

Good Luck to you in whatever direction you decide to go in. Remember don't ever be afraid to push back at the doctors, nurses, hospitals and clinics. It's your health and your Life not theirs. Your what really matters.