Wilson Disease: The Treatment

Wilson Disease: The Treatment

All I Need is a Prescription

Apparently, getting a diagnosis is only half the battle. This past week has probably been more stressful than any of the previous five. I wasn’t even able to talk to someone about setting up an appointment until this past Tuesday (4/11/17), and they initially told me that the first opening was in May. It makes sense that the receptionist would just look for the first available appointment, but waiting another month for an appointment was not something that I wanted to hear. I told her that I would die without treatment, and I guess that worked. She called me back a couple of hours later and told me the doctor would see me on Thursday (today).

Those two hours in-between the first call and getting an appointment set for Thursday, were definitely the worst of this entire ordeal. I went from no symptoms to barely being able to write due to my shaking in just five weeks. Who knows where I would be in another five weeks. I tried calling my neurologist to see if they could check with another hospital, but they typically don’t answer the phone. Eventually, we just drove to the clinic to talk to them.

This is when I realized that my symptoms get a lot worse when I am upset. That probably worked in my favor, because I looked way worse when got to the clinic. I also probably looked like a crazy person. They told me that they would make some phone calls and see if I could be seen at IMC earlier. I got the call from IMC just a few hours later, so at least I only had to suffer for a short time.

Let’s Get Some Treatment

The appointment today went pretty well. The doctor was completely booked so she was juggling her time between me and another patient. I’m going to point out right now how grateful I am that she moved my appointment up. That doctor is a champ. She looked at my tremors and my ability to balance and whatnot. She mentioned that it all coincides with Wilson Disease and we talked about treatment. The medication is called Trientine (also known as Syprine), and the plan was that I would start taking it tomorrow night.

pee jugBefore starting treatment, I need to do a 24-hour urine test so they know how much copper is in my urine (as a baseline to then measure if the treatment is working). The picture above shows the awesome jug that I get to collect my pee in. Another fun fact is that I have to keep it in the fridge…with our food. I apologize if this is too much information, but I just felt like it needed to be said. Also, it’s pretty funny.

Although it bummed me out that I would have to wait another day to start treatment, I knew I could do it. I’ve been patient so far.

Wait…It Costs How Much?

We stopped at Macey’s on the way home to check on the prescription, and this is where things took another bad turn. My insurance denied the prescription. So, I asked how much it would cost without insurance. The pharmacist searched for the cost in his computer and then paused. I looked at him and said, “It’s a lot, isn’t it?” He then proceeded to tell me that it was $26,000 for 120 pills. That’s right. Twenty six thousand dollars. The doctor wants me to work my way up to 8 pills a day, so 120 pills is about two weeks worth. Math is hard, so I did it for you. That’s $676,000 a year.

What this really means is that I need my doctor to send a pre-authorization for the pills and then probably wait another week for approval. I still feel pretty optimistic about everything because people out there are receiving treatment for Wilson Disease and I think it is safe to assume that they are not paying that much. Also, if it does get denied, we can look into some patient assistance programs.


First, I want to give some advice. If you are in a similar situation and can’t get appointments set, then take control of the situation. If I didn’t explain what was going on to that receptionist, then she probably would not have talked to the doctor about it, and I may still be waiting another five weeks for the appointment that I had today.

Also, click here to learn more about the situation with the absurd prices of Trientine. The main problem here is that Wilson Disease is very rare so the pharmaceutical companies don’t have a lot of incentive to manufacture the drug and there’s no competition between companies keeping prices low. There is also no legal barrier that prevents them from charging this much. If anyone wants to share this post I would really appreciate it, as awareness is obviously a big problem.

2 thoughts on “Wilson Disease: The Treatment

  1. Josh, we have been following you regarding this. Please know you are in our thoughts and our prayers. Stay pro-active. Being that this is so rare, you will likely need to be pushing for answers and help. Thank you for sharing. Take care.

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