Actemra Use Under Medicare


It has been a few months since I wrote a blog. During this time, my rheumatologist has added Actemra injections every other week to go with my weekly methotrexate injections. I’ve had some success with this dosing but the doctor has had to adjust, hold, then resume methotrexate because of liver enzyme lab values rising which happens as we all know. The Actemra injections caused my triglyceride readings to soar to 503 which is pretty bad for someone who is nine month post cardiac stent placement. Because of the high triglycerides I’ve had to go on a medication called Trilipix to lower them and am currently awaiting repeat lab tests to see if it is working. If not, the Actemera may have to be discontinued. It does seem that for steps forward I’ve had a few steps backwards too.

I am having more involvement with my larger joints. My left shoulder is is partially frozen. I can’t raise my hand to the top of my head to work with my hair. With some home exercises, I am able to move my arm behind my back which I was previously unable to do. Just this last month, my left hip has decided to act up as well. On physical exam, the rheumatologist said I was going to have to do some physical therapy or I would be facing crippling in this joint as well. Xrays were taken to see what kind of damage may be in my lower back and/or left hip. Results are pending.

Medicare doesn’t cover the full costs of Actemra which is very expensive. As we move forward, into the new year I’m not sure that I’ll be able to move forward with Actemra injections because my copay will be much higher in January as new deductibles must be met and the copay tier resets. In fact, my Rheumatologist says that most of his Medicare patients can not afford these newer injectable drugs due to the cost of the copay. Currently, I am not able to afford a supplement insurance for Medicare Part A or B because I’m not retirement age so changing the injection to an infusion would not be covered by going to inpatient or outpatient infusions.

The drug company that makes Actemra does have a payment assistance program that only costs a commercial insurance patients $5-$30 per refill but the program like many others of its type exclude Medicare patients, which I don’t understand. I pay premiums and copays just like the commercially insured but I’m not eligible for the savings programs because I’m on Medicare. Why are Medicare patients excluded? Often our need is greater and our incomes are fixed.

Medicare has had a rather negative impact on the quality of my healthcare. The most staggering blow was the loss of my insulin pump after using it for 5 years. I simply am not adjusting to multiple injections daily. Now it looks like Medicare may take my option for cutting edge injectables for the treatment for RA off the table. I did better carrying my own commercial insurance policy.

About Mischelle Jackson

I am a middle aged, single lady living with Rheumatoid Arthritis and other chronic illness which have led me into early retirement from a nursing career. I have a fur-baby, Jaycee, a Chihuahua, who makes me laugh and helps me get out of myself when I'm having a bad day. I crochet for relaxation when the RA allows. My faith sustains me.

2 responses »

  1. Hi Mischelle, I am sending you love and empathy right now. Only those with the same affliction can “truly get it”. I just turned 68 and finally took widow’s benefits at 62 as I was no longer able to work. I was dx’d with RA at 53, so it’s been a long time with really no adequate relief from this debilitating disease. Like you, I am single and live alone. I am really getting concerned how much longer I will be able to handle the ADL’s. I do have a gal that comes once a month to detail clean but over the years it seems I can only do less and less. But, my faith sustains me as well. I am so happy to hear you have Gracie. They sure know how to give unconditional love. I am from a family of “dog people” and my 2 daughters have them. I can no longer have a pet living in a condo, but sure do miss one.

    I fully comprehend the Medicare dilemma you’re having. I have encountered the same problems as you and it’s very disheartening. I can tell you are trying to be proactive about the disease and keep encountering expensive drugs and delays. I had been on Remicade, $4K, Actemra close to $5K per
    mo and Cymzia $7K. None of them helped slow down joint damage. Just went off Xeljanz, 20 mg and copay cost over $300/mo. Did not work either Had huge weight gain and enlarged belly. Good for the joints! Even RA dr says I am running out of options. Saw a Pain Dr yesterday and requested a
    scrip for Cymbalta. It’s geared toward muscle-skeletal pain and a mild anti-depressant. I will keep you posted on the results. Faith and pray.

    Regarding Faith: My best friend of over 40 years actually became emotionally and verbally abusive to me the last 2 yrs stating I was negative and not moving forward and made bad choices. I was so vulnerable to her hurts because of my love for her, I would actually get more physically ill. I cried every day for 2 years and felt so hurt and lost. I have forgiven her but cannot expose myself to her as the relationship is toxic. Lord and Behold: when I was at the RA Dr’s office one day about a year ago, a lovely woman started talking to me about my cane, etc. She has RA too and we have become close friends and get together for lunch every couple of weeks. We “get each other”. Talk about divine intervention! Also, two other friends of mine became my earth Angels and they keep me from being terribly lost and lonely. I realize many people don’t have the patience and empathy to deal with our slowness. Could be their loss though. Besides Gracie, I hope you have at least one devoted friend to help keep you gong.

    With love and kind of spirit to kindest of spirits,


  2. Jeanette, I am so sorry to hear that you’ve had a lack of understanding from a friend. It does make this road a lot harder to travel when you feel like you are walking it alone. I’m glad you have the Lord in your life. When you have the Lord, you are never truly alone and he is willing to bear the burdens we cannot. I do wish you the best as you continue with your treatment plan. God bless you. Thank you for sharing your story.

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