MEdoubleLL

My thoughts on living with lipedema and lymphedema…and other stuff

Still waiting

I got to my #4 dose of the month a couple of weeks ago (Zepbound), opened the box, and…it wasn’t there. I apparently got a box with only three doses instead of four. I didn’t notice it because the box comes with an instruction booklet inside that I hadn’t removed, and it obscured the fourth slot where the shot should have been.

I called the pharmacy but they said I had to contact Lilly directly and get a voucher, so I did that. It took a while, and at first I was afraid they would think I was trying to pull off a scam and would deny it, but they gave it to me. Because of that, I stayed at level 5 this month, and will titrate up to 7.5 in January. And my other plan is to open and check the box on the spot each month when I pick it up, to be sure that never happens again, because for sure Lilly wouldn’t go for that story twice, true or not!

Meanwhile, after that one respite I mentioned in my previous post, I remain at maximum swell, with high pain and stiffness in my knee joints in particular. I’m taking the same things, eating the same things, behaving the same way, so who knows why? Anyway, I have one month’s prescribed dose left on file at the pharmacy, so I’ll go up to 7.5 in January and hope something happens.

Meanwhile, I just found out that my Blue Shield from CalPERS is switching drug providers from OptumRX to CVS SilverScript, starting next month, and CVS doesn’t cover Zepbound. They want everyone on it to switch to either Wegovy or Ozempic, but neither of those has nearly the positive track record for lipoedema or lymphedema that Zep has, plus they don’t do anything about sleep apnea, which is the reason I was able to get Zep after appealing it last time.

So, I have an appointment with my previous miracle-worker to see if she and her staff can persuade them that for me it’s Zepbound and only Zepbound and they must cover it for me. If she can’t…I have to start considering how to afford $500 a month for this drug! Never mind that between what I pay to Medicare from my Social Security check and what I pay per month out of my library pension for insurance should cover whatever I need. Nope. Not in America.

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About Me

I started this blog to talk about a genetic, fibrotic fat-storing (some say autoimmune) condition called Lipoedema, which is something I began to experience in my 60s, although some see early onset at puberty, or post-pregnancy, or at menopause. The other “L” condition from which I suffer is Lymphedema, as a common secondary effect of the fibrosis that blocks lymphatic drainage. Despite the fact that one in 11 women suffer from lipoedema, most doctors have never heard of it, so on top of the pain and embarrassment of this extremely obvious malady, millions of us are out there being fat-shamed for a condition that isn’t contingent on diet or exercise for its growth. This blog was intended to share my reactions.

I have, however, reserved the right to discuss “other stuff” here and, increasingly, since January 20th, 2025, that is politics, because what else, after all, are we legitimately obsessed with in this age of fascism in these United States of America? So while the “theme” of this blog may be confusing, it is my blog, where I can talk about whatever I wish. You are not constrained to read the parts you don’t like. But I feel compelled to write about them.