My conundrum; TB and Entyvio

Hi. I’m new to this forum. I’ve had IBD (probably UC but GI falling it indeterminate colitis based on serology) for over 30 years. I’m relatively controlled on Lialda 4.8 gms a day and I flare for 4-6 months every few years (using Uceris for the last two flares with unclear benefit). I get annual colonoscopies now because of the risk of colon cancer since I’ve had the disease so long and family history. Although I’m essentially symptom free (one bm a day) my histology always shows mild to moderate mucosal inflammation. My GI doesn’t like this because of the risk of colon cancer with chronic inflammation.

So he wants me to start Entyvio to induce histologic remission.

My problem is I’ve been exposed to TB (negative chest X-ray and treated with 6 months of INH per protocol in 2001). We’re worried about reactivation of TB while on biologics. I cosulted with an infectious disease specialist last year who really wasn’t that helpful (noncommittal).

I don’t know what to do. Should I continue managing the disease and the flares as I’m doing knowing there’s a slightly higher risk of colon cancer (I’m getting annual scopes but the biopsies can easily miss dysplasia)?

Or should I start Entyvio and hopefully go into long term remission despite the risk of reactivating TB and the other risks of immunosuppression?

Thanks in advance for your opinions.

Post Edited (aravista) : 11/24/2017 8:21:43 AM (GMT-7)

Did you have TB? Or were you only exposed (had a skin test reaction, took isonazaid, etc.)?

I had several positive TB skin tests with clear chest x-rays, but because I was about to begin a biologic drug, I was told I had to take 9 months of isoniazid. I never was diagnosed with TB, but the positive skin tests meant I had been exposed. So, taking isonzaid could mean you (like me) were exposed to it and considered high risk—not necessarily that you had TB.

If you were only exposed and treated, then I’d say you’ll probably be fine starting a biologic drug. I never had any problems.

Yup, I’m the one with TB and on Entyvio now. Just had the second loading dose. I tested positive when doing all the pre testing to start Entyvio. Had the TB blood test and tested abnormal positive. Did a repeat on the blood test and of course it came back positive again. IBD doctor said I had to see an infectious dz doc. After being on Isoniazid for 2 months he gave the ok to start Entyvio. My UC wasn’t that bad when I started Entyvio as it was before I started the Tb Meds . I had some precancerous polyps Twice. I didn’t want to take a chance with cancer of the colon. I started the Entyvio, and I have no regrets. Seven more months of the TB med to go.
Hopefully I won’t have TB after all this. It was latent so I never knew I had it. There were no symptoms.
Now just a whole lot of Meds to deal with! I was very nervous but have calmed down. I believe everything will be ok.
Hope this all helps you to make a decision of what to do. If I can help in any way, happy to answer any other questions.

Faith

Thanks for your insight Faithmac.

Connor77 I’ve never had an AFB culture. I’ll ask my GI or the ID specialist about that. Thank you.

The PPD test is really inaccurate. I always tested positive on the PPD but negative on chest x-rays and more importantly I test negative on the *quantiferon gold* blood test.

I had a GI try to tell me I was infectious and make me take the TB drugs. I fired him and went to better GI's who agreed he is a "quack" and I was safe to take biologics.

I wouldn't take Entyvio to prevent colon cancer--do you even know what the odds are that you'll get colon cancer if you don't take it? And do you know what the long-term effects of taking Entyvio are--that's right, you can't know because it's a new drug. Why not try something else first?

I’ve been trying to find literature on colon cancer risk in IBD. I found a meta analysis that revised about 160 studies:

http://gut.bmj.com/content/48/4/526

They concluded that having colitis for 30 years equates to an 18% risk. There is correlation with severity of disease and extent (pancolitiis being worse than proctitis. 5-ASA use was protective potentially due to reduced prostaglandin production.

I’m considering sticking with Lialda since there’s no way of knowing if Entyvio will reduce my risk and because of the TB issue. I can get through the flares...

I think it ups the risk. I think flaring weakens the lining of the colon.
Having precancerous polyps really upped the risk. If a GI wants to start someone on Entyvio, there must be a reason. You still have to fail at least one other biologic. I would seek a second opinion for sure.

I understand your concern! I didn't want to go on a biologic either. But I also didn't want to lose my colon yet either. Entyvio worked for me and I'm so glad to be over all those symptoms and having to rely on prednisone.

See my inline responses below:

aravista said...
I’m getting annual scopes but the biopsies can easily miss dysplasia?
Biopsies are generally taken randomly, but can be targeted to a specific area if it looks unusual.
You can always ask for a Chromoendoscopy given your family history with colorectal cancer. Essentially a dye that's applied makes unusual areas more vivid and easy to spot. It redcues the odds of missing something.

Or should I start Entyvio and hopefully go into long term remission despite the risk of reactivating TB and the other risks of immunosuppression?
You could ask for Entyvio, we've had some patients take entyvio here after getting cleared of TB by an Infectious Diseases Doctor. They did fine afterwards.

You could ask for immunomodulators (imuran/azathioprine or 6MP).

I'd mention the thoughts to your doctor and see what he/she thinks. Overall, your quality of life is much better when UC is in a deep/quiescent/histological remission, and your long term odds of colorectal cancer are reduced. As long term inflammation causes dysplasia which becomes cancer. You want to be as well managed and trouble-free for as long as possible!

I'd strongly recommend finding the safest and best solution to control your UC and get into a histological remission. Biologics, immunomodulators, whatever is the best choice for you given your risk factor of CRC and past TB issue.

We're not doctors, so cannot say exactly what you should do. We can offer up opinions though!