New Dx of PMR

You are correct with regards to the insurance. I started Actemra infusions 4 weeks ago. I just had my second infusion, yesterday. I have Medicare (not Advantage) with a supplemental plan. I chose the infusion route, since Medicare Part B would cover it after I paid my annual deductible. My Part D prescription plan would have required jumping through hoops to get it approved, with a high co-pay.

I started feeling a lot better about 2 weeks after the first infusion. More energy. I still wake up with some knee/shoulder/wrist aches, but they subside as I get moving for the day. I view Actemra has a life saver.

It was stressful for me waiting to see if the insurance company would approve the Actemra, but I wasn't involved in any way with the process. My rheumatologist prescribed it and maybe provided justification, and after a couple of days the insurance company approved it. The reduction in the Part D cap from $8000 out of pocket max to $2000 this year helped a lot.

I never feel much difference from the Actemra injections. On the day of the injection I usually feel some really minor abdominal pains or sensations, and sometimes I feel a little tired the next day. But I know it's working since I've been able to taper the prednisone fairly rapidly with no issues.

All of this is interesting. I started with Actemra injections about 6 years ago but I needed a waiver by the hospital to get it approved. I think there was some compassion involved because I only needed to pay a small amount for the injections. My injections were never submitted to Medicare but I only paid a small copay.

Over time, I was switched to monthly Actemra infusions. This was mostly because it was believed that infusions might work better than the injections. Now my infusions are submitted to my Medicare supplement but not Medicare itself. I don't pay anything for "inpatient infusions" even though I'm technically only in the hospital infusion area for 2 hours once every month. The hospital gets a sizable reimbursement from my Medicare supplement.

When I started Actemra --- Kevzara for PMR wasn't on anyone's radar. I think the success of Actemra to treat GCA opened up new options instead of lifelong Prednisone in my case.

I honestly don't know how my Actemra gets paid for. "Presumptive GCA" was part of it. Another part was "let's see if Actemra works if I was willing to try it" on the part of my rheumatologist. I was nearly unwilling to try it when people who didn't know anything about Actemra said it might be worse than Prednisone. Clearly ... Actemra has not been worse for me at least.

It is a shame that so much about medical treatments boil down to who is going to pay for it. Then it seems to hinge on creative reimbursement scenarios so everyone stays happy.

While I was waiting for the insurance company to approve my Actemra injections, I did some research into alternative sources of paying for it. I was surprised to find quite a bit of financial assistance for people with GCA to pay for Actemra, depending on your income. There is financial assistance if you don't have insurance, and there is also co-pay assistance if you do. I assume the same would be true for Kevzara.

In my experience the drug companies found a way around the $2000 out of pocket maximum. I have Medicare part D and no part D plan in my county would cover Kevzara. My estimated out of pocket cost for 2025 was $63,000. I called Medicare and my Part D insurer and they told me to have my doctor send in a Rx. He did that and the insurance company called and said my revised cost was $16,000. It appears that by saying they don't cover it they can pretty much charge what they want! Medicare told me that if a drug isn't covered the out of pocket maximum does not apply. I am off Kevzara mainly due to cost but it also wasn't allowing me to taper below 5 mg prednisone. It also raised my LDL cholesterol 50 points, from around the upper limit of normal at 130 to 180! My doctor advised that I start a statin. No thanks! Hopefully the cholesterol will come back down.

When the drug company called me to say my out of pocket yearly cost would be $16,000 they told me that there were programs that could help. I asked the woman to describe what was available and not one program would be of assistance to me. It felt like they were going through the motions of appearing to be helpful. Most were government programs with an upper limit of 2-3 times the poverty level, approx $26,000 to $39,000 for a single person. I'm not much above that, so $16,000 a year is not reasonable.

I didn't apply for financial assistance since my insurance paid for my Actemra, but I found a couple of private sources that would pay if you're not insured or else help with the co-pay. The Genentech Foundation would pay if your income for a single person was below roughly $100,000, and more if you're married. I found another source, the HealthWell Foundation that would pay for at least some of your co-pay if your income was below roughly $60-70 thousand for a single person, and more if you're married. These grants were for people with GCA to get Actemra. I just Googled Kevzara, and it looks like Kevzara Connect provides assistance for Kevzara.

I don't know if it was prednisone or Actemra, but my cholesterol went up more than yours, and I'm going to have to go on a statin. But it's worth it to me to get off of prednisone hopefully.

There are many games that medical providers and insurance companies play. I worked as a medical case manager for a large insurance company many years ago. I could only do the job for less than 2 years. Most of my job was negotiating prices for "all inclusive" medical care. My specialty was mostly neurological conditions but sometimes that included complicated pregnancies and "preemies."

People would have a stroke or something and needed long term care. I would have to call medical providers and negotiate things assuming no complications from the treatment received. From the insurance company's perspective, I was supposed to get a per diem rate everything included. A medical case manager on the hospital side (usually a social worker) and I would discuss the price for things neither of us had any clue about. The hospital would say a price. The general rule was "cut the price in half and meet somewhere in the middle."

I think all the biologics are being scrutinized more because of the cost. The research is showing how effective they are assuming no complications. It used to be biologics were "experimental" and "not medically necessary" as the basis for denial. Now there are cost analysis being done. Complications from long term prednisone use might be more costly than biologics.

The following case study says it all.
https://www.statnews.com/2023/10/16/long-term-prednisone-steroids-ibd-side-effects-chronic-illness-alternatives/
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As the male counterpart but not with IBD--- I could have written this too.

I was on Kevzara Connect for 8 months but at the end of 2024 I was cut off. I believe they cut off all straight Medicare patients and maybe Advantage as well. I qualified by income initially since they do a credit report. I'm glad to be off Kevzara for the moment and mainly put in a comment so others could have the information. It didn't make sense to be on 2 drugs with no real progress toward getting prednisone below 5 mg. Especially if I needed to add a statin which has more side effects. The doctor told me how much the high cholesterol was raising my risk of heart attack and stroke and it got my attention. My rheumatologist wants to see how I do without Kevzara and if I have to raise the prednisone significantly possibly get me on Actemra. After 7 weeks off Kevzara not much change.

Hi, sorry to hear of ur diag. My docs had me on pred 4 over 7 hrs, must get off. Ra doc said, not pmr is ra. B sure, ck with primary, can't stay with prednisone 4 long. MUST hav diag from experienced ra doc, many tests needed to b sure. Example, test could show beginning of MS. Good luck, stay in touch. Regards, Jerky.