Tell us about your experiences with weight management. Take our survey!

caret icon Back to all discussions

Alternatives for me.

I have been battling RA for quite some time now. While working I was able to receive Enbrel or Humira for $60 per year. This was using my work insurance along with a card from the manufacturer which is what got me to $5 a month. Without the card it would have been $200 a month.
Now, here I am at 71 and on Medicare Traditional and can't find any coverage for Enbrel, Humira or other simlar drugs.
When I first started treatment, my doctor tried methotrexate which worked fine but 6 months later caused my liver to develop drug induced hepatitis. It was then that he tried Enbrel which allowed me to return to a "normal" lifestyle. All was well as I said until I retired. The cost for Enbrel skyrocketed to over $6,000 per year out of pocket with the majority falling in the first quarter of each calendar year. I looked through every plan available. The irony is with my prior income, I could have afforded this much easier. Now retired with SSA and a small pension along with a monthly IRA stipen, I can live ok with anough surplus for a small vacation and a little fun. Having to spend $6,000 a year will mean losing my buffer.
My doctor had me try an infusion which was covered 100% since it was given in a hospital environment. All was going well but once again, my liver hepatitis returned and the liver enzymes were rising monthly to the point where I had to see a liver specialist.
At this point I am thinking I will simply have to endure the pain and attempt to live with it using ibuprofin and acetaminiphen.
Has anyone else been able to find treatments that work and are covered by medicare?

  1. Unfortunately, Medicare subscribes to “fail first” policy. What that means is you have to try every cheaper alternative (although they won’t say ‘cheaper’ they will say ‘more likely to be effective’) before they will pay for the “less likely to work” (read: more expensive) medicine like Enbrel. Fortunately, though, with Medicare you have the right to fight and appeal the decision all the way to an administrative law judge if necessary. I had to do that to get them to pay for one of my medicines ones. It took nine months, but I won the case simply because they are not allowed to deny treatment simply for monetary reasons. It is work and it takes a while but they always deny first to weed out the people who aren’t serious. If you need any help let us know and we will do what we can. Keep on keepin’ on, DPM

    1. Hi . I don't even want to get started on what Medicare does when it comes to biologic treatments (and you don't need that rant), so I'll expound on the excellent information from . Mind if I ask what infusion medication you were on? I'm wondering if it was Rituxan because that has been linked to potentially serious liver issues. I also ask because some infusions are different - Rituxan is a blanket immune system suppressant, while others are more traditional biologic treatments and target a specific part of the immune system, like your Humira injection did (Rituxan is a monoclonal antibody medication). I mention all of this because if you haven't tried a traditional biologic infusion, your doctor may want to go that route to get you the Medicare coverage without the fight. That said, if, given your medical history and this latest episode with the infusion, your doctor believes Humira is the treatment you need, as Daniel said, you and your doctor can try to make the case for Humira being medically necessary. Like Daniel, my wife, Kelly Mack (a contributor here), and I have taken fights with insurance companies to the outside state healthcare ombudsman and won. I hope this information is helpful and gives you a good starting point to speak with your doctor about the next steps in getting the treatment you need. Wishing you the best and please feel free to keep us posted on how things are going and to ask questions. Richard ( Team)

      1. Thanks Richard....It has been a number of options. My doctor started me with methotrexate. After 6 months of this my liver enzymes went through the roof. I never had liver issues prior to that. I then started on Enbrel which worked out wonderful and kept me pretty much pain free for years. I tried Humira since it was every 2 weeks but that did not work as well as Enbrel. I was on the Enbrel for 5 years. During that time, due to various reasons I had to suspend using Enbrel (bad colds, etc.) I accumulated about 6 months of buffer. While working my copay with commercial insurance was $200 a month. Having said that, Amgen (manufacturer) picked up $195 of the $200 so my out of pocket so my total annual was $60. I retired in August 2021 and started my Medicare journey. I used my buffer up and discovered the sad truth that Enbrel would now cost me between $5000 and $6800 a year when all was said and done. The irony was I could probably have afforded that easily when I was working. I wasn't rich but was comfortable when working. My income dropped a lot once retired but I had it planned out ok between my Pension, SSA and a small IRA monthly draw. When I realized this I went back to the doctor and thought we had a good solution. He put me back on a smaller dose of Methotrexate and started me on an infusion treatment. It worked ok at first but my liver began to become inflamed again. He said drop the methotrexate but said that the infusin drug muight stop working in a year without it. The infusion was Remicade. Once every 8 weeeks. It was done in the hospital so my copay was zero. Medicare covered it 100%.
        Sadly my liver was getting worse and worse and it would react worse after each infusion. My rheumatologist becamse concerned so insisted I see a liver expert. After 2 different MRI's and a liver biopsy it was determined I had developed drug induced hepatitis. That's basically what occured. I never had a liver issues while on Enbrel.
        I'm going to try and find another Rheumatologist before I begin the battle with Medicare. The liver doctor suggested there are other infusions that are not as bad for the liver. I don't know if they would be covered but since they are given in a hospital setting I am hoping they would be.
        Should that path fail, I will pursue a battle with Medicare. In order for anyone to help, it appears you have to be below the poverty level. My plan was to have a budget with $4-$5k surplus when I could afford to travel a little. I worked hard during my years with the hope that I could travel once retired. They have no sympathy and simply tell me "use that money for Enbrel and we're sorry".
        My last infusion is good until the end of July so I have a couple of weeks to find an alternative. For now my plan is NSAIDS although they don't help much.

        Thanks for the feedback!!!


        1. Jeff, I want you to know that there are infused medications that may work. For 23 years I have mostly used infused meds. In addition to Remiciade there is Actemra, Simponi Aria, Orenica, and Rituxan. In addition most of these have Biosimilar and Bioequivalent variants. I have used each over the years except Simponi Aria and have had good outcomes. I have been using Rituxan and variants now for 14 years. I think I would check in with your rheumatologist and look forward to your next solution.

          Best, rick

      2. Thanks Rick, my Rheumatologist wants me to give Actemra infusion a try. He wants to see if perhaps I'll have better luck with an IL-6 inhibitor. I'm a little concerned as the reason I was told to stop ataking Remicade was the impact it had on my liver. My liver enzymes jumped up pretty high. We watched my liver tests before and after getting the 8 week infusion and it would jump up high the week after receiving it and would improve right before I received the next infusion. I see one of the cautions with Actemra is liver issues so I am keeping my fingers crossed that this perahps works.
        I never had liver issues while on Enbrel. I started my journey on methotrexate but that really impacted my liver so had to stop that. I then got on Enbrel while I was working and had commercial insurance. I had a $200 copay but Amgen covered $195 of that so my out of pocket was $5 per month. I then retired in 2022. I moved to Medicare and suddenly I was going to have a $5,000 - $7,000 out of pocket for Enbrel. That's when I moved to Remicade since being an infusion, it was covered my medicare 100%. As I now am aware, after liver MRI's and a liver biopsy, the Remicade made my liver unhappy. I am hoping that the Actemra not only helps the RA but also does not go after the liver.
        For now my Rheumatologist has me on 15mg of Prednisone a day to help me get through my current flare. Once the Actemra is set up and approved by Medicare, I will withdraw off the Prednisone which will drop to 10mg next week and 5mg after that.
        The type of RA I have is called Sero-Negative since I do not have a positive RA blood marker. But it is incredibly disabling. Enbrel worked best. Humira did not work as well and the Remicade worked ok for the first 9 months but seemed to not work as well the last 3 months when my liver began hurting.

        So here's hoping Actemra works. In reading other posts, it seems that my battle may continue as so many posters say they've tried multiple drugs.


        1. Here is some good news, at present, Medicare is moving to a maximum Out of Pocket of around $2,o00 for all medications. That was in the inflation reduction act in 2022. The delay is annoying but there is an end.

          Using Actemra, has the advantage of a well respected medication that is infused thus a part B instead of a Part D medication. I have not heard of liver issues while using Actemra, but as the warning label indicates it is possible. I did not have liver issues while using Actemra but nor did I have them while using Remiciade.

          There is another class of infused medication that you might consider, I am sre when the time is right your docotr will suggest it if appropriate. Its has a more troublesome label, but again have not had issues with it.

          So just know there are other infused medications, and help is coming for payment in 2025, if the law remains the same.

      Please read our rules before posting.