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.