Does anyone self pay for an anabolic?

Forteo and Tymlos have patient assistance programs, if your income qualifies. I got 18 months of Tymlos for free. It is called Radius Assist and the application is online.

With a score of -3.6 I certainly hope you get an anabolic. Was the doctor who said you would not qualify, a PCP or endocrinologist? The doctor needs to do a medical necessity letter with info on your reflux and severity of your DEXA.

I suppose you could take one pill of Fosamax, report that it triggered GERD, you then "failed" it and maybe then would qualify! But honestly, this insurance preference for bisphosphonates and Prolia is a big problem because these meds can affect the effectiveness of anabolics later.

Keep us posted! Are you seeing an endocrinologist in July?

@windyshores,windyshores
Thank you for your quick response. The doc that told me I would just have to try Fosomax first was a rheumatologist my PCP referred me to. He did say that Tymlos would be far preferable. But then he said it would be Prolia after Tymlos (should I eventually make it to Tymlos), for the rest of my life (I am 62).

I am blessed to have a doctor in my area who specializes in bone health and the hospital system she associates with has a women’s center very near me that focuses on osteoporosis. I have seen her PA (I would have had to wait until September to see the doctor). They seem to be very comprehensive and have ordered all the tests (parathyroid, celiac, etc) mentioned in these discussions. I plan to stick with them.

They said to get 1200Mg calcium citrate plus D3 between food and supplements daily, exercise wisely (and they sent me to physical therapy), and I go back in July at which point we will discuss meds. She did say that meds would be a necessary. I am hoping that with their expertise and experience, insurance will cooperate with an anabolic. But I am trying to gather info to make an expeditious decision if they do not….

Also, I take care of my elderly father and he was just diagnosed with cancer (third time). It looks like this go around could be difficult, and I want to take care of myself, but not be incapacitated with side effects to the extent I’m not 100% there for him……so Tymlos really appeals since you have talked a lot about being able to ease into it by managing dosage……

I only took 7 Fosamax pills before I was changed off of it. I don’t know the least amount you need to take to satisfy the insurance company and doctor.

You might want to get alendronate, either free samples or a small number with prescription (it’s cheap) and take one. And document document document. And document that you followed protocol of no food, sitting up, and water intake. Leave no reason they can blame side effects on that you didn’t take it as prescribed. Maybe only one or two tablets is enough to demonstrate a side effect. All they need is a record saying it caused unacceptable side effects.

My experience was irritation in my throat about 2 hours after taking the pill. No amount of water changed that. And I never have had a reflux issue. I also got a simple case of conjunctivitis, pink eye. That seems to be a side effect that is not listed as frequent- but from the endocrinologist response it seemed important. So watch for irritation of your eye conjunctiva. I was not medically diagnosed with pink eye, but I’ve been around enough kids to know what it is. I self-reported the incidence to the doctor as it cleared up in 3 days without treatment.

I’d also tell the doctor you don’t want to continue to irritate your esophagus because it is a precursor to cancer. Most of the research I could find on alendronate back when I was faced with the same problem discussed side effects of the stomach. They never seemed to follow up on how the drug refuxes back up into the esophagus and the damage it causes.
If drinking water stopped reflux it would be a miracle cure!

@babbsjoy you might want to see an endocrinologist who specializes in osteoporosis. My doctors (two) don't prescribe Prolia unless they have to, due to the rebound. I don't think you can take Prolia the rest of your life unless you are much older! Studies I have seen are on 3,4 and 8 years. One person on another forum is taking it for 5. Then you do Reclast.

Keith McCormick, in his book "Great Bones", and on his videos, suggests doing just 1-3 shots of Prolia if you do take it, then Reclast (or Fosamax, but Reclast is stronger against rebound).

I did Tymlos, then Evenity (4 months only, had side effects) and now Reclast. I was the only patient in my doctors' practices (both of them) doing Evenity after Tymlos but I think that will be more common- and others on the forum have done that.

My docs say people need to be very very careful about stopping Prolia. And though you can take it longer than other meds, it is an anti-resorptive and over time the risks of jaw necrosis and atypical femur fracture go up.

A lot of people do Reclast after Tymlos. Hope you can start on a good med!

@rubyslipper thank you for this valuable insight!

@windyshores
Thank you! The doc in July hopefully will not recommend Prolia. I am currently reading about Reclast, which many (including you—thank you!) on here have talked about as a follow up to anabolic. I will ask about if they would support Evenity after Tymlos (should I get Tymlos!). Thank you for taking your time to help so many others, to navigate this laberynth of issues/info. !

@windyshores
AND, I hope the rheumatologist that said Prolia the rest of my life wasn’t trying to predict my life expectancy 🤪—yikes! He was pretty put out that when I said I wanted to wait and see what the other doc’s recommendation was!!

@babbsjoy 🙂

As the old folks used to say, “You don’t pay him (the “put out” doc) no never mind!

I’m having the same issue with my doc pushing Prolia after Tymlos/Evenity which I’ve pretty much decided is not for me . . . perhaps it’s good for his pocket??? As I’ve already had more than 5 annual doses in the past, I’m currently trying to find out if I’ve surpassed the number of lifetime infusions of Reclast one can have. Why, oh why is good and correct information so difficult to get our hands on - OP is not a new health issue.

Does anyone know if the rebound experienced after cessation of Tymlos/Evenity will dip T-scores below their original pre-bone-building DEXA values - my scores were not all that bad, per my doc, but meds were prescribed/approved because of my compression fractures.

Thanks for listening, all!

Cheers!