GI Doc not offering discussion on alternatives
Sorry in advance for the long post.
Tl,dr - poor informed choice provided by doctor on treatments for EoE, is this normal? should I go elsewhere?
I've been with the same GI doctor's office for 2 years now. My symptoms were pretty under control for the first year, so it was just check-ins. I have been taking a PPI twice a day for years. I started having some mild symptoms and wanted to try some further medications. Since then, I have had multiple experiences with my doctor that made me question whether I should find another practice.
They immediately wanted to prescribe me Dupixent. When researching Dupixent, I saw that a side effect is an increase in cold sores. I already deal with cold sores and have done a lot to reduce these breakouts to 2x a year. With how horrible I find cold sores, I'd rather have EoE symptoms than cold sores more often. I already can barely eat with cold sores due to pain. When I mentioned this, my GI Dr said that she hasn't heard of Dupixent causing this. I found this baffling since it literally is listed on the website for Dupixent.
At a later appointment, the same conversation happened, and this time, the Dr said they have not had anyone experience side effects, but everyone they work with on Dupixent has great experiences with it. This also baffled me since anecdotal evidence is worthless, and I have no clue how many people they actually work with that have EoE. They could have 2 patients for all I know.
I finally got them to prescribe Eohilia. I had a heck of a time getting this medicine on a regular basis, and I also sucked at compliance. I got really stuck on it needing to be refrigerated, and it made it terribly hard for me to remember to take it. I just could not get into a routine to take it. In this time, my doctor left the practice, and I was provided a new doctor at the practice.
When I had a follow-up appointment, I shared all of this with the new doctor and asked to try either a fluticasone inhaler or the budesonide respules that I would like to make my own slurry out of. I told the doctor that this would fot better for me because I can actually keep these medications with all my other ones so that I can maintain better compliance because it would fit into my medication routine. The doctor again brought up Dupixent, to which I declined again. Then they finally said they would look through the medication list to find a fluticasone med that fits with my insurance.
The next day, I get a call from the nurse that there was not any fluticasone inhaler that they could send to the pharmacy and said that we can either continue on the PPI until things get worse, try Eohilia again, or try Dupixent. This seemed like an ultimatum and made no sense to me because how is there not an inhaler that I can be prescribed? I asked again about the budesonide respules or if there was a different inhaler medication. The nurse said she would discuss it with the doctor. Then I see Alvesco was sent to my pharmacy. However, this medication is not covered and was expensive. At this point, I am extremely frustrated since this doctor is trying to tell me there are no other treatment options basically besides Dupixent.
I call my pharmacy benefits manager and go through a list of medications that I know can be used for EoE (many off-label) with them to see what is covered under my insurance. They said that the fluticasone hfa inhaler was covered. They said that Alvesco needed a PA and that another medication I asked about would need a PA.
Now I am mad that my doctor told me there was not a fluticasone inhaler they could send to the pharmacy when the pharmacy benefit manager just told me there is and it is covered.
I sent a message to my doctor in the portal and told them I talked with insurance and that the fluticasone hfa was covered and the other meds required a PA. I also sent over the names of some other meds like Qvar that I had found in my research that I would also like to discuss before considering anything else.
Now I have the fluticasone hfa inhaler prescription at the pharmacy.
Has anyone else experienced a provider that tries to push only the main 2 branded treatments and acts like nothing else exists? Am I crazy to be as upset as I am about this?
It just feels like I am being lied to or that I have a doctor who is lazy. I don't feel like I should have to work harder than the doctor to get treatment that works for me.