Concern about Biologics

I was diagnosed with UC twenty years ago. I have had no hospitizations or surgeries due to my UC thus far. I take oral meds (Budesonide, Asacol)as well as rectal ones (enemas, foam). I now have colonoscopies yearly. My last one was in December 2016 and I will have my next one in two months.

I am currently recovering from a really rough flare that included c diff. I am winding up a course of Vancomycin and an increase in my regular meds.

And some more about Joanne:

I am a very big sports fan, especially of baseball and football. The Los Angeles Dodgers have been my baseball team since I was a kid and the San Francisco 49ers are my football team!

I am the Vice President of a Little League and during the Spring season, I am the Manager of a baseball team of 6 & 7 year olds. I am moving up to the next division after Managing TBall for two years. Love the kids, sometimes the parents not so much! LOL!

One of the great passions in my life is animals as I have been an animal lover forever. I have been a vegetarian for many years due to my respect for animal life.

Colitis Symptoms:

I have been having a flare for the past three weeks but it’s finally calming down. I think the meds are kicking in. My flare included diarrhea, bleeding and mucus which has now stopped. I’m still having numerous bowel movements with some urgency but not as bad as before.

Ulcerative Colitis Biologics (And Concerns)

I have been taking 6 Asacol tabs and one Budesonide capsule daily when I’m “normal”. I also take iron, Vitamin D, B-12 and Vitamin C. I am now also drinking Boost.

With my current flare, my Budesonide was increased and I started using the Mesalimine enemas I always have on hand. Those have now been replaced by the Uceris Foam.

This current flare really wiped me out. I am exhausted, anemic and my nails are all breaking/cracking.

My question to other UC patients is, are you on or have you used any of the biologics that are out? My gastro doc has been trying to get me on one for the past two years but I’ve refused due to the side effects and potential “lymphoma” concern I’ve heard about. He’s recommending something called “Entyvio” for me that he says is specific for Ulcerative Colitis or Crohn’s patients in that it is “gut specific”. I’m worried about the potential side effects of that drug and how they might effect me. I’ve tried hard to manage my UC and I just try to roll with it and live my life. I don’t want to be a victim of UC.

Since I’ve had UC for twenty years, I’m pretty used to my lifestyle by now. I’m very careful with what I consume and I always make sure I know where the nearest clean restrooms are wherever I go.

My husband and the rest of my family live with my UC as well and they’ve all been great. Again, I’ve had UC for so long, they’ve all adapted to it. They know all about my Colos as well as my blood counts. They are all very loving people and good sports. They go with the flow and my Dad even cooks special food for me. I’m very fortunate to have them all.

I am also very fortunate to have a wonderful Gastro doc. He’s the best and I can always get in touch with him when I need him. After my first Gastro doc retired (whom I adored!) I went through three other docs before I was lucky enough to find my current doc.

Meds:

I’ve tried meds in the past that I’ve been allergic to. Those meds have had sulfa in them. I’ve had to stop them right away because of hives. I can’t say they worked or didn’t work on my UC per se, I just couldn’t take them.

written by Joanne

submitted in the colitis venting area




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2 Responses to Concern about Biologics

  1. Cwl October 3, 2017 at 3:23 am #

    Try FMT before you try biologics if you can. Stop the iron supplements, they are a really bad idea if you have uc. Ie. They feed pathological bacteria in the gut. Also there was a study recently around IBS and vegetarianism, basically saying that veggies experience it at a much higher rate than meat eaters. It’s probably because of the increased account of fermentable fibers in the diet, so you might want to look at a low fodmap veggie diet or low residue diet. I found that I couldn’t stomach a lot of veggies during a flare.

  2. Brian October 3, 2017 at 7:47 am #

    I’m commenting regarding your question about trying Entyvio.

    I have had UC for 21 years now. Diagnosed at age 21 and I’m now 42. The first 18 years was proctitis and was well controlled with Canasa. I’d see a little blood and start on Canasa and within days the blood disappeared. I never had any other symptoms and I’d go 6 to 8 years with no bleeding and no Canasa. September 2014 I started seeing some blood again and started Canasa. This time it wouldn’t stop the bleeding. In October 2014 I had a colonoscopy and it showed 5 cm of inflammation. Within one week of the colonoscopy the proctitis exploded. I started having urgency, passing large amounts of mucous and more blood than I’d ever seen before. I became anemic pretty quickly due to the loss of blood. Over the ensuing months I tried Lialda, VSL #3, L Glutamine, Uceris and of course, prednisone. Prednisone was the only drug to give me any relief. July 2015 I had a flex sig and it showed moderate to severe inflammation all the way up to 55 cm. I went on another course of prednisone, kept taking Lialda, Canasa and added Rowasa enemas. This treatment plan kept things somewhat at bay, but any improvement was short lived once I stopped the prednisione. January of 2016 I decided to give Low Dose Naltrexone (LDN) and Curcumin a try. I started out pretty good with it, but after 6 weeks I started having severe arthritis and exhaustion and the UC symptons were still there. This was the first time I contemplated Entyvio because I liked the GI focus of the drug, vs the other biologic treatment options. The other drug I was thinking about was Imuran. My physician has been very flexible with my treatment plan, pretty much listening to me and letting me try different things. He was against the LDN (my family doctor prescribed it for me), but was ok with me trying Imuran, with Entyvio being the next step if Imuran didn’t work. I started Imuran April 23, 2016 and I started seeing some improvement. Unfortunately, on May 9, 2016 I woke up with Pancreatitis and I had to stop Imuran. Enytvio was my next step. I was approved very quickly and I had my first infusion May 19, 2016 and my second June 1, 2016. I started seeing improvement immediately. I had my 5th infusion October 20, 2016 and during November 2016 I was back to 100%. It took the full 6 months to get me there, but it does work and the only side effect I had was mild itching after taking a shower. I added 1 Claritin daily and the itching stopped within a few days.

    I am now 18 months into this and I continue to get the Enytvio infusions every 8 weeks and it is a very simple process. I had my 11th infusion September 20, 2017 and the medication continues to work very well for me. I wish you the best of luck.

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