Entyvio Treatment #2

So as a quick recap I have been battling a flare for 1.5 - 2 years. I have moved up the treatment ladder. Doctor wanted to put me on Simponi. Insurance refused as I had not proven than Humaria was ineffective. I did some additional research, found Entyvio and requested it. Insurance approved it under medical coverage not drug coverage.

I have seen several posts requesting pricing information. I do not yet know what the bills will come out after insurance but the home health company listed a charge of $13k per treatment. Note I said home healthcare. You do not have to go to an infusion center. You can get someone to treat you at your house. I am so happy I found this out. Makes treatment much better.

So I recently completed infusion number 2. I found the next day that energy level wise it was like someone had flipped a switch. I did not realize how bad I was feeling until I started to feel better.

Now I want to be clear I cannot say for sure that it was the Entyvio that made the difference. I also stopped Immuran ~1.5 weeks ago. Immuran absolutely wiped me out. It will be a drug of last choice in the future. The doctor wanted me to continue on the Immuran but I do not feel like it was doing anything positive.

One day I think I am better. Another day I think they are holding steady. I am still on other medication in addition to the Entyvio.

The other data point I will throw out there is that I have called the Takeda (manufacturers of Entyvio) several times and they have always been helpful and friendly.

I am happy to answer any questions but at this point I really am not able to comment on the efficacy of the treatment. However I am really, really hoping it works and I can dump the other meds.

Another thought I wanted to share. There are clearly less expensive treatments. From what I read and understand Entyvio is very limited on the systems it works on thus impacts and side effects are less likely/reduced. I decided 1) to give it a try and 2) that it was worth the cost.

Here is hoping my "gamble" pays off.

A lot of posts here say entvyio works slowly, so be prepared to hang in there a few months or more with it. I hope entvyio doesn't end up costing you a lot out of pocket. Typically, you need to fail one anti-tnf biologic drug (remicade, humira, or simponi) before getting approved for entvyio. The first bill you see for any biologic treatment is never what is actually paid for the treatment. Usually, insurance cuts that bill in half based on my experience. For example my remicade is billed at $6,600.00 and my insurance only allows a maximum of $3,200.00 to be paid for that treatment.

Thanks everyone.

To add some clarity.

Yes, I have been approved for Entyvio. Without failing to prove another drug did not work for me. I personally contacted my insurance company to verify it would be covered. Then I had them send the necessary paperwork to my doctors office.

While I do not know what my dollar cost will be. I do know that since it is under my medical coverage (vs. prescription coverage) I pay 10% of the cost. Once I have met my deductible of course. I am also on the Enytvio assistance program. The reason why I say I do not know my costs is that I do not know the negotiated rate for the home health visits and supplies. The provider is in the highest coverage tier but unless I get all sorts of information from the provider I am not sure of the costs.

Humiria would be a less expensive option but I think the Entyvio is worth the extra cost. Although we are waiting to see.

To be honest my symptoms are not too bad. My biggest complaint has been my energy levels. Well that and the fact that my feet are always cold. The BM's are a small impact on quality of life. I am not stuck in the bathroom 5, 8, 10, or more times a day. The bigger concern is the long term implications of the extended inflammation.

Based on the experiences I have read on here I do not expect Entyvio to work quickly. I am not expecting 10+ weeks for it to really kick in. Then my hope is that sometime in the next year or so I can dump the Lialda and my very hated Rowasa.