Onboarding: Starting Humira

We had tried everything else. Mesalamine, diet changes, exercise, steroids had all been attempted and failed. We had researched and researched and then waited to see what our insurance would cover and then researched some more. Getting to the point of actually onboarding Humira was a journey.

After months of steroids to try and get my husband's Ulcerative Colitis under control, it had become quite clear to us and to his doctors that this plan wasn't working. Long periods of high steriod use had taken their toll on him and our family both physically, mentally and emotionally ('Roid rage isn't just for those who are building muscles...). We weren't even treading water, we were sinking. We knew walking into his latest appointment with his GI doctor that something needed to change after that day.

We discussed the options and agreed to start the process. This meant submitting for pre-approval to insurance for a couple of different medications to see what they would cover (We submitted for Entyvio, Remicade and Humira), have another colonoscopy, blood work and xrays. For us, it also meant a second opinion. Starting a immunosuppresent is a big step and not one that can easily be taken back. We wanted to be sure that this was the right next step.

So I called the Mayo Clinic. I will never forget that phone call. I think that was the moment my heart realized the seriousness of this. The act of calling and having him assigned a patient number there and then having them grant him an emergent appointment was both a reality and a gut check.

In the end, after all of the tests and paperwork and after the second opinion, we determined that Humira was the right next step. Then one day the door bell rang. It was the first round of shots. Humira is a medication that requires a much higher loading dose. I pulled the reciept out from the box and my jaw dropped. The loading doses cost in the neighborhood of $25,000. I have described that moment to several people as realizing I had a car in my fridge. The kindness of God in that moment is that we had actually paid $5 for this precious medication, a copay that has continued despite our high deductible insurance plan.

A few days passed and the car sat in the fridge, until it was time to go to the doctor to do the loading dose. Our doctor requires that the loading doses be done in his office in case of reaction. We have a friend who did his at home. Apparently every doctor is different in what their policy is. As we sat nervously, waiting for our doctor, we felt heavy. This was a big deal and it would be a process that we would have to repeat at home every two weeks for the rest of his life.

It seems that the ease of injecting Humira is directly tied to how much body fat you have... the more the better. It can be injected at either the stomach or the thigh. My husband is not a big guy and an avid mountain biker. There is no fat on his legs and not a lot on his stomach. Certainly not enough for the four injections that needed to go into that fat North, East, South and West of his belly button. The first two injections went in. I hated hearing the click of the pen and then the gulping noise and watching his face grimace. The third shot was rough and on the fourth he blacked out. There was no fat left to inject into and he had put it into the muscle. He had a Vaso-Vagel reaction and turned grey before blacking out. It was SO scary. He was only down for a few second, he didn't even have time to fall out of his chair. He sat there for a bit, was monitored by the staff, drank some juice and ate some crackers and then they let us go home. In two weeks time, we would have to do this again, at home.

The two weeks in between were uneventful. It takes at least 6 weeks to start feeling the effects of Humira. The next shot, the first one on our own was so scary. I was prepared for him to pass out again, even though it was only one shot this time. We worried for nothing. He gave himself the shot and while it was painful, it was also uneventful. We have repeated this process every two weeks since then. It has become routine. He has traveled with his meds, facetiming me from hotel rooms all over the country in case of reaction (we decided after that first shot that it wasn't wise for him to ever inject himself alone.) It is our new normal.

After about 6-8 weeks, we started to see change. It was working. By God's grace, it has put him into a complete remission and will keep him there. It was such a scary choice to make. Humira comes with side effects, the greatest being cancer risk. We came to realize that doing nothing and living with UC also came cancer risk. Either way came with it's own set of risks. Humira has given him his life back. We are so grateful for this renewal of health and the life it has allowed him to live again.