Tymlos

[BoneyBlue]

59 year old female diagnosed with Osteoporosis, spine is -3.0 and hip is -2.2

Have had back issues for several years and fractured a rib last year while "doing nothing".

Endo wants me to start on Tymlos, which I am fine with, but my insurance has denied the coverage because I have not had a large bone fracture - thank God!

I can't take the orals due to severe reflux/gastro issues. I am fit, healthy eater, etc...

Anyone have experience appealing insurance decision on Tymlos coverage? Thanks!

[Raleigh59]

My insurance denied me Tymlos saying I had to try their oral Bisphosphonates standard of care. My insurance called me when I appealed it. I had tried one but I had to try their other choice. I tried that and had trouble with that too. I went back to my dr and he wrote a letter to my insurance that said this patient has tried both Bisphosphonates that you offer and she got stomach side effects and cannot tolerate these medicines.

The insurance approved it and I take the daily injections.

Now I don’t know if I can end up with jaw bone loss or some other serious problem

[josephinius1 in reply to Raleigh59]

What kind of fracture do they want? Femur? Hip? Geez.

I've broken my wrist (and insurance didn't balk at surgery to fix it,) and now I know I've fractured several vertebrae, maybe ribs too. I tried fosamax, had esophogeal issues almost immediately. Endocrinologist prescribed Evenity because my scores are bad (-4.6 in spine, -3.3, -3.5 hip,) said insurance would surely cover it, but they want me to try Prolia or Forteo first. I've heard Evenity is best if it's your first drug, and I can't take any of them forever, so even if I did two years of Forteo (assuming they'd actually approve that,) they're going to have to approve something else after that. I watched a Dr Glaucomflecken video--he humorously suggested that insurance companies deny often because only 5% will appeal. Pretty shocking! But I'm not going to appeal. I don't fancy being on one of these drugs for decades either, and I do feel guilty that I let myself get this bad (I'm 62, diagnosed 9 months ago.) I was doing the things I thought I needed to do (running, weight lifting, healthy weight, no smoking, very little alcohol,) but when I started having back pain, I didn't demand attention. (I did mention it to my doctor, but she blew me off. I took myself to physical therapy, and tried chiropractic. So I WAS trying, but no one suggested osteoporosis, not even when I broke my wrist.) Still. Seems like it must be my fault, and I do have deep seated self-worth issues, so, fighting for an expensive drug--they're right, I'm not going to appeal.

We'll see what happens at the year mark.

[Raleigh59 in reply to josephinius1]

I did an appeal - I had to try three oral medicines and they all failed with stomach problems, then my Dr wrote the appeal and won it . I am on Tymlos daily , the updated forteo

Dr says I will be on something the rest of my life.

My endocrinologist says everyone has mini fractures they don’t know about and that’s part of what bones do.

[Maieva]

I was on Reclast last year and had 11% improvement. My insurance would not cover Tymlos until I tried something else. My endocrinologist from the Mayo Clinic appealed and was denied. I was approved to take Tymlos this year, but I was nervous about the side effects of this drug and had not had any with Reclast so I chose to go back on Reclast this year. I haven’t heard much about Tymlos so if any of you out there have had side effects, I’d like to know.

[JessKh]

I see this post is 4 months old - but will reply anyway to add to the info on this site.

My insurance (Premera Blue Cross) denied Tymlos and denied an appeal. Even a peer-to-peer wouldn’t sway them. I was on Fosamax but insurance insisted I try a 2nd bisphosphonate before they would consider covering Tymlos, despite the severity of my osteoporosis.

I switched to Regence Blue Shield which was willing to approve Tymlos after 1 bisphosphonate. I think that a rationale from the endocrinologist was also required.

I am now nearing the end of my two years on Tymlos and have gone down the bone education rabbit hole to make my best choice about next steps. That’s when I learned that starting on a bisphosphonate before the anabolic almost assuredly blunted my improvements. When I brought this up to my new endo last week, she agreed that was likely and said that it is very frustrating to the doctors as well. Anabolic first to fire up the osteoblasts followed by bisphosphonate to calm the rebounding osteoclastic activity is appropriate order to allow for best outcome.

But anabolics are expensive; bisphosphonates are not. 😤 Geesh - if I’m going to get up the nerve to try these scary drugs, at least allow the correct order!

[intexasnloveit]

Tymlos has a co-pay assistance program that is not based on income. The assistance program pays $7550 per year which helps a lot. I’ve had no fractures but my endocrinologist did an excellent job with getting my insurance to cover a portion. The co pay is high but with the assistance program, doable for me. That and my endocrinologist gives out samples. Good luck. My endo is in Houston and is well versed in dealing with insurance companies which was a big help.