I tried to fill my tacrolimus prescription yesterday. It's 5mg 2x/day, which equals 300 pills. My insurance will only fill 180. My doctor, a very busy doctor at Mayo Clinic, has to provide Cigna with a pre-authorization. Seriously. This is my life. And now I'm going to spend a week of time I don't have sorting it all out.
I also spoke with some doctor at Mayo today about my last tacrolimus lab results. My regular doctor and the fellow doctor from the last time are both out of the office, but she wanted to make sure that I got a follow-up, which was nice. My trough levels were at 5.1mg 2 weeks ago, and we're looking for around 7. This makes me assume that Dr. Fervenza is going to want to up my dosage, and it's around my current dosage that the headaches begin. I've had one nearly ever day since last week, and I have zero quality of life when they hit. Hell, I just wanna whole up in my bedroom in the quiet darkness, yet I have a JOB and a DAUGHTER and a HUSBAND and a HOME and a LIFE that I want to lead.
I know we're going to disagree about what the next steps are, but I hope we figure it out TOGETHER. The doctor that I spoke with (who shall remain nameless because I just didn't bother recording it in my brain) mentioned cyclosporine, and I was like, "Are you KIDDING ME?" She asked if I'd taken it, and I told her that I had in 2009 with no success. I already know that I'm not doing it again. I'll try a new drug, but not one that I previously took for the required amount of time with zero success. I know what the side effects are, and unless there's some new study or data available, I have zero faith that it will work differently the 2nd time around. This is where doctors and patients sometimes lose their way, willing to bang their head on concrete if they thought it might save their kidneys. I'm not that patient. I'm going to make sure they hear me loud and clear when I discuss my quality of life, because that's ALL I have right now, and I'm not willing to give that up when I know there's a better future that I should expect.
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Ahh, good ol' Cyclosporine. UGH! I am a firm believer that attitude has a role to play, and you're right about thinking that cyclosporine would have a different effect now, is my bet. I was on it for 6 or 7 years and would be very leery to go back on it, too.
ReplyDeleteFingers crossed to figuring it out quickly!
I was on Cyclosporine too and refused to go on that again. Didn't realize how badly I felt till I was off it. Plus, the hair growth!
ReplyDeleteI have been on Tacrolimus for almost a month now and today I meet with my neph and his fellows for some follow up. (I also take a total of 12 pills daily now...rivialing my 70 year old dad!) Only side effects have been a metal taste I have in my mouth and the unfortunate, diarrhea and some shakes. But other than that, I actually feel pretty good. I only have 13 pounds of water on me...would be nice to see my legs/ankles again. But the swelling is slowing going down.
I totally agree on quality of life. It's the only thing that any of us have :) Good luck with the insurance company! And have a super happy fun filled birthday!
Maybe he could give you a prescription for 5 mg tablets?
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