Welcome back, old friend.

The story I’m about to tell you is wild. I don’t want to oversell it, but I also don’t want you to miss how much our God works in even the smallest details. Also, as always, I am not a doctor. Anything I write on this blog is my experience and should never replace a doctor’s advice.

When I was first diagnosed with Multiple Sclerosis, I was presented with three Disease Modifying Medication options. After much consideration, we chose Tecfidera (Dimethyl Fumarate or BG-12). From October 21, 2015 until March of 2021, I had a great relationship with this medication. The side-effects were rough in the beginning, but in the end I enjoyed remission and the ease of taking a twice-daily pill to manage my Multiple Sclerosis.

In early 2021, I received a notice that my insurance would no longer cover Tecfidera. A competing manufacturer had come out with a generic version and Biogen (the manufacturer of Tecfidera) had lost their patent, so they came out with a new variation called Vumerity. My insurance did not cover the generic at the same co-pay rate as the name-brand. I believe my copay for the name brand was a flat $350, but the copay for the generic was 20% of the cost of the generic which was $1200 per month. Needless-to-say, I could not afford that. And the manufacturer for the generic did not have any copay assistance at the time. All that left me with one viable option – switch to Vumerity. Biogen marketed it as a better formulated form of Tecfidera, easier on the stomach and causing less side-effects. My doctor had many patients in the same situation with me, and all of them had tolerated the transition well so she recommended that to me as a good option.

In March of 2021, we began the long pre-approval process with my insurance to switch to Vumerity. The initial transition was not bad and my body adjusted well. A year later, in March of 2022, I was in Lymphopenia–a disorder in which your blood doesn’t have enough white blood cells called lymphocytes. The medicine had worked “too well”, for lack of a better explanation. Most MS Meds are supposed to suppress your immune system–not wipe it out completely. We assumed it was an anomaly or a virus and agreed to recheck my levels in May 2022.

On May 12, 2022, I went to my local lab to have my blood drawn. Within an hour, I received a call from my neurologist telling me to stop taking Vumerity and throw the remaining bottle away. My lymphocyte levels had dropped even lower. Almost undetectable, actually. To make matters worse, I had tested positive for JCV (John Cunningham or JC virus). To anyone without a compromised immune system, JCV Positive is no big deal. For those of us on immunosuppressant drugs, it’s a very big deal. This conversation with my doctor was a serious one. She asked me if I had any trips planned and I told her we were going to Disney World the next month. She let out an audible sigh of frustration. When I asked her what the plan was she said:

• Reduce your stress.
• Keep taking your vitamins.
• Recheck CBC in June before travel. Cancel if Lymphocytes are not at least .5.
• No flights–driving only for travel.
• Mask when in crowds.

My work life was a literal waking nightmare at that time. I had begun medication for anxiety, but no amount of Buspar can make your body relax around threats of harm and retaliation, Monday through Friday, 8:00 am to 5:00 pm. I cried as I ended the phone conversation, uncertain of what I could possibly do to reduce my stress.

I made a plan to begin therapy after vacation. I set up an advanced directive–if I got PML (a complication of being JCV Positive and having lymphopenia), I didn’t want any heroic measures performed to save my life. I discussed my wishes with my husband and brother. I had my lab work done, and my lymphocytes were exactly .5, so I went to Disney World with my husband and kids and had the time of my life.

After a month of therapy and EMDR and some major breakthroughs, I got up the courage to resign from that toxic work environment on July 25, 2022. Within a week I had two job offers and in less than two weeks, I started my dream job, back at the school district I had always called home. In early August, I had a repeat CBC and my levels had jumped up to .64, a level that made my doctor and I both feel more secure. But, because Vumerity had caused me to go into lymphopenia, I could no longer take that medication. We took a few months off to research and discuss other options and begin insurance approvals and specialty pharmacy took about a month to get the script filled and for copay assistance to come through.

In December 2022, I began Kesimpta.

The shot itself was easy to take and painless. I liked the thought of a once-monthly treatment and since this was a B-Cell depleting drug, it was a chance to give my lymphocytes a longer break and rebound from the damage Vumerity had done. But from the beginning, I had a side-effect from Kesimpta that I haven’t heard many others reporting. 24 to 48 hours post injection, I fell into a deep, dark depression. No amount of exercise or drinking water or shocking my face with ice could snap me out of it. I wept for hours at a time. Brian and I talked and talked and tried to see if we could process the emotions, but there was no processing it. It felt like there was an impending doom and suffering for my family and me and there was nothing I could do to stop it or make myself snap out of it. Then, after a day or two, it would begin to pass and I would hope and pray for the side-effect to not happen the next month when I took my injection. I continued Kesimpta until April 2023. It was too much. For whatever reason, it caused a serious chemical imbalance in me. My neurologist and therapist both agreed that I needed to discontinue the medication.

In June of 2023, I met with my doctor and we began yet another medication discussion. She presented two options to me. (Because I don’t feel educated enough on either of these medications, I’m not going to name them here.) They both work by depleting lymphocytes, and I had to be at a minimum .7 to be eligible to begin those therapies. In June 2023 my lymphocytes were .66. They had only risen .02 in 10 months, so we began another waiting game to see what my WBCs would do without medication over the next few months.

Brian and I spent the summer praying and researching. From pretty much the beginning of our homework, we were not feeling comfortable with either medication option presented. I had a follow up scheduled in September, so we decided to just leave the decision with God. We asked that He make the choice evident. In our minds, that either meant that we would suddenly feel comfortable with one of the medication options, or we would feel comfortable going the holistic route for a while. Boy, did we underestimate our God.

When Vumerity failed for me, I became so angry. I lamented, if only there had been a way for me to stay on Tecfidera. But, that was over a year ago and I had moved on and honestly didn’t think Tecfidera could ever be an option for me again because of two reasons: the cost (with insurance not paying, cash price for the name brand is $10,412.67 per month and cash price for the generic is $6,616.87 per month) and my lymphocytes being low and going so low with Vumerity. I wasn’t sure if I would ever be allowed to take a medication like that ever again.

My appointment with my neurologist was scheduled for 9/29/2023. Like I said, we had been praying for God to provide wisdom and direction and had pretty much decided there was no way we could pick either of the medications she had suggested and were hoping she would have another suggestion or be on board with me going the holistic route for a while.

One day while sitting at home on lunch, we were watching TV and a commercial came on for Mark Cuban’s Cost Plus Drugs. At first, I thought it was a joke. Seriously, Mark Cuban has a pharmacy???

Brian and I laughed and then were super intrigued. I wasn’t thinking at all about how it could benefit us, I was just excited that people had another option to get medications that would save them money. Brian had other thoughts.

As soon as Brian got back to his office, he went to the website and put in Dimethyl Fumarate (Generic for Tecfidera). These words popped up on the screen:

“Your drug cost with us $39.50.”

That’s less than 1% of the retail cost of the generic. I couldn’t believe it. Brian couldn’t believe it. Surely it was too good to be true, right? Surely, this wasn’t what God was trying to tell us. I had given up hope on ever being on Tecfidera again.

We rallied our team of prayer warriors and began praying for three things:

1. That my lymphocytes would be above .7 on my next blood test.
2. That my neurologist would be open to letting me go back on Tecfidera.
3. That she would be willing to work with Mark Cuban’s Cost Plus Drugs, and not think we were crazy for suggesting it.

1. A few days before my appointment, I had a CBC done. My lymphocytes were .93. ✅

2. When we went in to see my neurologist, I first told her I was not comfortable with either of the medications she had presented back in June. I don’t know why I was nervous… She has always been understanding and patient. She told me she understood my concerns and that she could see why I had reservations. I then asked her what her thoughts were on going back on Tecfidera. She proceeded to pull up my electronic chart. I was humbled as she flipped through literally hundreds of pages of notes, searching for the history of when I stopped Tecifdera and why. Once she was refreshed she said, yes, since your lymphocytes are back within normal range, that is an option, but it looks like you had to switch because of insurance not paying last time . . . ✅

3. Before she could finish her sentence, I said, “And what if we had something we wanted to try other than insurance . . .” She said, “Yeah! So, we’ve had a lot of patients use Mark Cuban’s Cost Plus Drugs . . .” ✅

Y’ALL. Brian got chills. My eyes filled with tears. I can’t believe either of us didn’t pass out. We just couldn’t’ believe it. Not only was she on board with the plan to try Tecfidera again, but she mentioned Mark Cuban before we even got a chance to! WHAT?!?!?! I seriously thought about not bringing it up because I thought she would laugh at us. I’m so glad we listened to God!

She put in the script on Monday, October 2. I paid $14.20 for my starter pack and $39.50 for my one month supply. For reference, typically insurance approval and specialty pharmacy set up of a new medication takes at least a month. After only a week of processing and shipping, these beauties arrived today.

I begin Tecfidera again tomorrow… almost eight years to the day of my first ever dose. My stomach will have to get adjusted again, but I’m praying that side-effects are not as bad this time. After a month, my body should settle in and I’ll get back in a routine of banana and med for Breakfast and having my second pill with dinner.

I’m so thankful. I’m thankful for God’s guidance. I’m thankful I live in an age of advanced medications and people who fight to give affordable healthcare to people. I’m thankful for a neurologist who KNOWS me and my brain and my body better than I do. And I’m thankful for my husband – he has prayed harder than anyone for guidance and direction not only in regard to this disease but for our marriage and family. He’s the ultimate leader and provider and I’m so thankful I get to do this life with him.

If you would like to join us in our next round of prayers, we would be honored:

1. Pray my blood tolerates the medication well. My next CBC is in January 12. If I am back in Lymphopenia, I will have to stop the medication.
2. Pray my body tolerates the side-effects well. Daily flushing is just a part of the deal. It’s not horrible, but it is a thing. The bad side-effect is stomach cramping. That typically gets better over time, but you have to power through the first month. My doctor prescribed Singulair for me to take along side the Tecfidera as it typically helps with the stomach side-effects.
3. Pray nothing falls through with our new favorite pharmacy. These drugs should not cost anyone or their insurance thousands of dollars.

This post was so long. Thanks if you read until the end :).