How I reinvented myself after PMR

[artfingers]

This is per your request, PMRPro to add to your collection of our stories. See below:

Sorry, don't know how to do a link so maybe you can cut and paste this. "Reinventing myself with PMR" - I have had PMR for 9 years, starting at age 62. It hit overnight like a sledgehammer and stopped me in my very active, energetic tracks. I was a body builder for 40 years, ran 3 miles or biked daily, kayaked, climbed mountains, and rarely sat down. After caretaking for both parents and working with 800 students and a difficult administrator, the stress (one assumes) pushed me over the edge into PMR. It took a year and many doctors to diagnosis. Those early years were difficult but manageable with steroids. From the beginning, my rheumatologists (old and new) and GP have always called my "case" unusual in that I still kept up with my various workouts and physical activities. I did not fit the typical guidelines. They all agreed my issues might be "mechanical" due to injuries and not PMR. Even so they weren't sure. Over those 9 years, I had meniscus repairs, two knee replacements, shoulder and hip surgeries which always helped some but did not help the fatigue, weakness, lack of stamina, or pain. As an elementary art teacher, I had good health insurance (here in U.S.) and a sick bank I could draw on. I would be off two to three months every year for surgeries and recovery yet thankfully kept my job. Eventually, I found the stress of teaching too much so retired just prior to COVID. I found a level of activity I can sustain, far less than my old super active self. I'm so thankful to be able to walk (2 miles, no more running), lift weights (very light only 2 days a week but not all the time), swim, hike small mountains, kayak, and bike. I'm currently at 5 1/2 mg split dose and reducing. I do manage to travel (usually alone as hubby won't travel) to Maine, Florida and other places each year. I've just been approved for Kevlara but my share of cost is $1,000 a month so may have to skip it (that's another story). I miss my old energetic life terribly and hope some day to get off this unwanted rollercoaster ride.

[VeeWat]

What was your starting pred dose? We’re you on anything else?

I was looking at the Kevzara information site and it seems scary. 😰kevzara.com/

[PMRpro Ambassador in reply to VeeWat]

Anything looks scary when you read the legally required informed consent stuff! I had an ablation last week - you should have seen the company's information sheet. I could believe a lot of patients just say no - though equally, loads wouldn't understand a word of it!

[artfingers in reply to VeeWat]

My starting pred dose back in 2015 was 15 mg. I've been up and down on that. I'm not worried about the side effects. They do a lot of lab work before and during to make sure you can do it. Also have to be up on all vaccines. Biggest drawback? With my medicare advantage insurance (a very good plan by the way) it costs $1,735.74 for a month (2 injections). Yikes! I'm working the system right now trying to get an exemption. Unlikely but I am tenacious!

[artfingers in reply to artfingers]

Oops, I'm not worried about the side effects of Kevazara (forgot to be specific). Kevzara is so expensive here. I have heard there are biosimilar drugs that are cheaper in Europe. Not available here. Big Pharma! Ugh.

[PMRpro Ambassador in reply to artfingers]

Not so much Big Pharma but your insurance system. In the rest of the world the fundholders have far more clout because they speak for a whole nation's system.

[VeeWat in reply to artfingers]

Well, I hope you can get it. Good luck!

[Grammy80 in reply to artfingers]

I just noticed this, artfingers, and just want to encourage you to stick to your fight. I take Actemra, I'm in the states with BC/BS Medicare Advantage plant too. I believe the cost runs about $5000 per month but now I only pay $11.45 for the first two months of the year and then nothing, four injections per month for GCA. I'll research and see what I might find for you.💞

[artfingers in reply to Grammy80]

Thank you Grammy80! I did apply for the patient financial help program from Kevzara, and then also requested a waiver to my insurance company to get it at a lower tier but I'm doubtful it will go through.