Starting Stelara

On September 26th of 2016, less than a year ago, Stelara (Ustekinumab) was approved by the FDA for the treatment of Crohn’s Disease. To say I was ecstatic would have been an understatement… I remember reading the press releases and letting out a huge sigh of relief. I was so glad to know that IBD patients had ONE more option!

As excited as I am to see more treatment options become available, I still worry about exhausting the medications that are available to me. At this point, I have failed both Humira and Remicade. Though Entyvio may have kept my disease in remission, the¬†ongoing side effects just weren’t worth the trouble, extra appointments to keep, and 4 additional medications I required.

At this point in time, Stelara is the right move. The question is, will it be a feasible one? Today we took the first step in finding out! My insurance company approved my use of the drug, but required that I have a home health nurse come to administer the medicine (little known fact, home nursing is typically cheaper than outpatient hospital infusions). I received an interesting care package yesterday… boxes full of medical supplies, an infusion pump, anaphylaxis kit, saline, and (3) 130 mg vials of Stelara. Today was the day. My nurse, Cindy, came to the house and we were ready to do my introductory infusion! Or so we thought we were…

Among the materials shipped to me, there was no IV kit, no alcohol pads, and a pump that was defective. Is now an appropriate time for the face-palm emoji?! Fortunately, my handy dandy and resourceful nurse had extra supplies on hand. Unfortunately, even the back up pump didn’t work correctly. We managed to make it work though (with lots of unnecessary beeping and warnings)!

Regardless of whether or not the afternoon went as planned, I was able to complete my infusion and (assuming all goes well) I will follow up with gastroenterology and begin subcutaneous injections in 8 weeks!

Are you currently on Stelara or another biologic? I’d love to hear about your experiences!

5 Comments

5 Comments on Starting Stelara

  1. Tanya Anderson
    July 28, 2017 at 9:49 pm (4 weeks ago)

    I am cirrently on Remicade and have been for 3 yrs. They say it is working and I am in remission. However hard for me to know because they said I have U.C. and now IBD as well. I would just like more than 3 days of good and be able to eat more foods

    Reply
    • Mallory
      July 29, 2017 at 12:59 pm (4 weeks ago)

      Thank you for sharing, Tanya! Remicade worked for me for quite some time, but after having a systemic inflammatory reaction… we knew we had to move on. If I were you, I would ask for some clarification from your doctors. Inflammatory Bowel Disease (IBD) is actually an umbrella term for the various conditions we suffer from. That acronym encompasses Crohn’s Disease, Ulcerative Colitis, Crohn’s Colitis, and Indeterminate Colitis.

      I completely understand your longing to feel better and be able to eat. As Maria mentions below, I would definitely suggest trying different dietary approaches with the help of your doctor or a nutritionist. There is no known diet to cure or treat IBD, but the Crohn’s and Colitis Foundation is currently studying the effects of the Mediterranean Diet and the Specific Carbohydrate Diet on our diseases. It is their hope to find data that can help those of us who are struggling to find relief through the food we eat. I sure do hope you find some relief soon… remember that you’re not alone in this journey!

      Reply
  2. Maria
    July 29, 2017 at 8:17 am (4 weeks ago)

    I’m sorry to hear remicade and humira have not worked for you! I was on humira for 4 years and it did its job for me.. however, the complete game changer for me was my diet. I never had serious side effects but the possibility always bothered me. So, after doing some research, I decided to make my diet as natural, or healthy, as possible (a few years before, I had already seen a nutrionist, but her suggestions still involved a lot of processed food, especially to avoid lactose and sugar, and lean meat, which can still be full of antibiotics). I had already cut red meat, but then I cut all sorts of meat and as much dairy, eggs and processed food as I could.. I’m mostly plant based now, but still eat cheese, eggs and some sea food every now and then and I can definitely tell how that my body is more at ease the more vegan I eat. I must say that the transition to this lifestyle was not straightforward though – for 2 to 3 months after I made the change and started consuming a lot more vegetables, also without humira, I felt a lot more bloated and was going to the bathroom a lot (but still felt a lot better, with more energy and mental clarity). After that, my body learned how to deal with all the extra fiber.. I imagine you probably have already tweaked your diet quite a bit, but if you haven’t made some drastic change like this, I’d really encourage you to. ‘Let food be thy medicine and medicine be thy food.’

    Reply
    • Maria
      July 29, 2017 at 8:19 am (4 weeks ago)

      Oh and I’ve been med-free for almost 2 years now!

      Reply
    • Mallory
      July 29, 2017 at 1:07 pm (4 weeks ago)

      Hi Maria! Thank you so much for sharing about your success with diet and nutrition. As you know, nutrition has long been such a controversial topic in the IBD community. I’m anxiously awaiting the results from the diet study that the Crohn’s and Colitis Foundation is currently conducting.

      I’m not cut out for a plant based diet… I’m way too much of a carnivore for that. However, I have found a lot of relief of my GERD and the digestive complications that stem from my duodenal stenosis through a eating a ketogenic diet. I know it’s certainly not a cure, and my disease was so bad until after surgery that we are a little hesitant to go med free… but MAN I feel so much better eating this way. I have less indigestion, less stomach cramps, more regularity, and mental clarity.

      I have to be careful when talking about the ketogenic diet… because I would hate to spread misinformation or lead others to believe that it is a replacement for medical treatment. However, I am so interested to see how the conversation around nutrition continues to develop as we continue to gather scientific data.

      Over the course of the next few months, we are planning to taper off of several medications that were only necessary to treat the side effects of other meds… face. palm. I’m hoping to find myself on a much more conservative list of medications soon!

      Hope you’re having a wonderful weekend!

      Reply

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