Wilson Disease: Update

Wilson Disease: Update

Three weeks after my diagnosis I finally started a treatment. Initially, the treatment for Wilson Disease seemed simple and straightforward. However, after digging a little deeper, we realized that it is not so simple. There are some pretty serious risks associated with all of the options for treatment, and it definitely didn’t help that my insurance was not cooperating either. As you can see from the image above, we are still optimistic and happy to start on the road to recovery.

Health Insurance

As I mentioned in the last Wilson Disease post, my insurance required a preauthorization in order to cover the Syprine. Well, they denied that and said I had to try taking Depen first because it is cheaper. Depen is also riskier for patients with neurological symptoms as it can cause serious and sometimes permanent side effects. I contacted a Wilson Disease expert in Michigan about my situation and he recommended that I take a completely different treatment called Galzin (zinc acetate). Galzin doesn’t work as fast as the other medications, so it isn’t typically used for the initial treatment, but it also doesn’t have the risk of causing permanent side effects.

We were worried about the Galzin working too slowly, so we eventually decided that we would just try the Depen. However, we had the doctor write a prescription for the Galzin too so that I could try that if I had any issues with the Depen (my doctor said to stop taking it immediately if I experienced any negative side effects). When I got to the pharmacy, I was told that my insurance also denied coverage on the Depen. I had to call my doctor to have them send in another preauthorization. If marked “urgent” it still takes three days to approve a pre-auth.

I paid full price for the Galzin because my insurance wouldn’t cover any of that either. At least we can afford that one though. After another week, the insurance finally approved the coverage of Depen. I know that these treatments are expensive, but this was ridiculous. It took longer for me to receive treatment than it did for me to be diagnosed. There needs to be some kind of option for treatment that is readily available. This is, after all, a life threatening disease.

Patient Assistance

We also finally heard back from the patient assistance program about getting financial help with the Syprine (which would be the next best option if the Galzin doesn’t work). They also denied our application stating that I would need to try the Depen first since that’s what my insurance is requiring.

Current Treatment and Beyond

I started taking the Galzin just over a week ago, and we decided to keep trying that for now. There is a chance that my symptoms will get worse over the next few months before they start getting better. I have to take it three times a day on an empty stomach. This means that I have wait two hours after eating before I can take a pill, and then I have wait another two hours before eating again. I thought this would be kind of hard at first, but it has actually been pretty easy. I guess staying alive is enough motivation. It will help me be healthier at least.

I feel a little odd about taking a drug that isn’t technically FDA approved for the initial treatment of Wilson Disease (Galzin is FDA approved as a maintenance drug). However, we will know in the next week or so if it is actually working. For now, we just want to avoid taking the risk of experiencing any permanent neurological worsening that may occur with Depen. Right now we are hoping and praying that the Galzin will work. If it does, then this is likely what I will be taking for the rest of my life. If it doesn’t, then we will try the Depen and go from there.

How I’m Doing

My symptoms are still just a tremor in my head and hands. It did get a bit worse while waiting for treatment, but at least nothing new has come up. My boss has been really understanding through all of this and I have been able to work from home for the last month. Since I’m a web developer, I can do most of my work laying on the couch with my head on a pillow to stabilize it. This sounds pretty ridiculous when I say it out loud.

It is hard for me to go out for more than a few hours at a time because my neck gets sore and my head starts to ache if I let the tremor run rampant for too long. I will typically take a break and lay down on the bed a few times each day. I also haven’t been driving for the past six weeks or so, and Shaylee has become my chauffeur. On top of this, avoiding foods with high levels of copper is something that I will continue to do during the first year of treatment. Since I started on the Galzin, the tremor doesn’t seem to have gotten any worse, so hopefully that continues.

I want to thank everyone that has been so supportive of us during these last few weeks. It really has made a huge difference in our lives and our attitudes.

2 thoughts on “Wilson Disease: Update

  1. Hi Josh! Thanks for sharing your story. My name is Bethany Chorley and I too have Wilson’s Disease. I got diagnosed in 1984. I was on penicilliamine for a year and got terribly worse neurologically and there were bad side effects. Then I found out about zinc by Dr. George Brewer at the University of Michigan and started taking Galzin since 1985. The Galzin works great at controlling the copper. You made the right decision by taking Galzin. I gradually got better and better. Unfortunately, since I am on Medicare. Medicare no longer covers Galzin. I cannot afford the Galzin since it costs $324.00 a month. I started taking an over the counter zinc gluconate in November 2016, but my copper got a lot higher by being on it. I just switched to Gluzin, a zinc gluconate that the Wilson’s Disease Association recommends so hopefully when I get tested again my copper levels will be lower. I have applied to the Teva patient assistance program to get the Galzin. I am praying they will accept me. Thanks for sharing your story and God richly bless you. Bethany Chorley

    1. Hi Bethany, thanks for sharing. I switched to trientine in July and got a lot worse over the next few weeks and after seeing Dr. Askari at the University of Michigan I switched back to Galzin. I’m definitely glad that I switched back and I’ve gotten a lot better over the last three months. We asked Dr. Askari about Gluzin and he said that it should work just as well as the Galzin, so I hope that’s true for you. I’m also planning on switching to Gluzin next year when my insurance plan starts over so I’d be interested to hear how the Gluzin works for you. Thanks again for sharing and I’m glad that someone with Wilson Disease found this post.

Leave a Reply

Your email address will not be published. Required fields are marked *