Struggling with making an osteoporosis treatment decision

I live in Kansas & we have Senior Center's here. Beginning in October they
take appts to help you decide what drug plan is best & least expensive for you.
their is no charge as all are volunteers.
They also help folk with their tax prep= no charge= volunteers.

Look for Senior Centers in your area.
We lived in Orange Co. ( the 60's) & then north in Tarzana in the 70's.
Loved going to Disneyland when it wasn't so expensive & Knott's Berry Farm when it was FREE. In Tarzana my son saw peacocks on his walk to school.

I am on Evenity and seem to have no side effects. I have traditional Medicare and it is covered 100% under Part B because I have the injections at an infusion center.
Other non-traditional Medicare plans like Medicare Advantage plans are different. They seem to all have different rules about these drugs.
Open enrollment starts October 15 and you can change Part D plans then if you want.
I have never changed my plan because the Part D plan that I have is fine. Also, the Evenity is covered by Part B. Every year, however, I call Medicare - 1-800-med-icar- and review my husband’s Part D plan. He is on a lot of expensive drugs and the formulary changes year to year. This is a project, but important.
I call Medicare during open enrollment and the well trained, helpful person on the phone already knows what drugs he’s on, where he’s getting them, how much they cost, etc. They will then look at other plans with me and we figure out what is best for the coming year. If he changes plans, the Medicare rep on the phone can do that right then.
I have been doing this for 20 years for seniors on Medicare. Now I’m a senior and vigilant about this.
Just remember that the Part D plans are all private entities, therefore, they have a profit motive. Medicare is not for profit and doesn’t care what plan you choose. So, you will get unbiased information from them.

It is just that I have serious GERD. McCormick and my doc feel that alendronate is less potent to lock in gains but it is certainly adequate. To bypass GI I am doing a 20% dose of Reclast (kidney disease) with hydration. McCormick today suggested that I continue at 1 mg but doc wants me to tell him if I can handle 2mg after the test dose of 1 mg. You are fine with alendronate! Wish I could take it!

@aliber your DEXA score isn't that bad. It is definitely good to see an endocrinologist because GP's tend to prescribe bisphosphonates or Prolia.

Meds for GERD can affect absorption of nutrients and can contribute to osteoporosis. If you are on Prilosec, you can get off it by using Pepcid instead then tapering 🙂 My doc helped me with that.

@madeleine40 do you qualify for Radius Assist for free Tymlos? I have a Medicare Advantage plan through BC/BS that is covering my last months. You could try to get coverage with your current plan if the doc would write that you need the adjustable dose-? But if copay is high, that is still a problem!

My endo won't use Prolia unless he absolutely has no choice due to the difficulties in getting off.

Hi Windy Shores,
I am following this post and always read your replies as you know your stuff.
I would greatly value your opinion please.
I was diagnosed at age 50 with osteo. As an active, healthy person who exercised regularly and ate clean I just increased all my bone supplements and waited 7 years.
At that time with the osteo worsening I went on Fosamax for 5 years. (I wish I did a deep dive into all this then but didn't) The first 3 years reduced the osteo from - 2.7s back to 2.4s but then at the 5 year dexa went back to the 2.7s. My bloodwork shows my osteoclast activity is doubling again.
That was almost a year ago and I went into deep dive mode. Of course the endo and all docs want to start me on Evenity followed by Prolia (which I really don't want to do).
We thought perhaps I had a parathyroid issue as my wrist was always worse at -3.5 and my serum CA is always 10.1 or so. After doing a workup with a renown parathryroid surgeon they don't think that is the problem so now back to the original meds option. I do not have fractures.
Because of the elevated CA and low forearm score evenity is the desirable drug vs. Tymlos or Forteo. My question is this:
Since I already did my 5 years of 70mg Alendronate would I be able to do reclast instead of Prolia after Evenity? I have asked my docs and no one answers this simple question.
In your experience do you have any suggestions or can point me to someone. There are limited endos where I live and no one has found one who will discuss options.
Thank you sooo very much. You are always soo helpful to everyone.
Barb

@tmbdefazio interesting that your CA score raised the issue of parathyroid. My calcium is usually 10.1-3 and I don't take that much calcium! But my PTH is always well within normal range. I know it can be more complicated than that but I have other reasons for osteoporosis (cancer meds) so I never pursued. I am glad that docs told you your parathyroid seems okay. (There is some discussion of parathyroid on Inspire...)

Yes you can take Reclast or alendronate after Evenity. Amgen makes both Evenity and Prolia and their website recommends Prolia as a follow up for obvious reasons.

Keith McCormick's book "Great Bones" discusses the transition off Evenity and compares it to the problems getting off Prolia though to a lesser extent. Still, without a follow-up med, bone turnover is worse than before treatment, he says. McCormick writes that either a bisphosphonate or Prolia can be used.

He says to transition "immediately" but I believe that means a month after your last injection but double check that.

I chose Tymlos over Evenity because at the time I had heard I could do Evenity after Tymlos but not the other way around. Now my doc says there is no data for that sequence as yet. Tymlos and Forteo work through the parathyroid so if your doc felt your calcium was high, maybe that is why they are going for Evenity. My calcium is the same as yours and I have not had any problems.

One other thing: I believe you would have to stay on Prolia fairly long term or else transition at some point to Reclast, which is very very tricky in terms of timing. I have been told that with Reclast, I might have an infusion or two and then, with monitoring, take a med break. So I feel that makes Reclast the better option for me.

Good luck!

Thank you so much! You are always so spot on. It is so interesting that your CA is high also. Mine has always run high (up to 10.5-9) but went down to high 9s while taking Alendronate. Like you the PTH is fine. Fortunately I have not been on any cancer drugs.
I wanted to do the Tymlos first for the same reason you did as I heard you could buy time and sequence to Evenity later? I hadn't heard that changed.
I have a Dr Appt and I am going back to request Tymlos again now that we ruled out parathyroid. It seems it still buys time to me 🙂 He like most docs here go straight to Evenity now.
I really don't want to do the Prolia route unless it's down the road and I have to. I was told because I already did 5 years of the Alendronate that Prolia would be my only option and I question that too. Tymlos will give me a couple years to figure that out hopefully.
It's all such a puzzle piece and it is such a blessing we have people like you that are willing to help and share all that you learned.
I hope I can do the same at some point.
Thank you again and have a wonderful day.
Barb

I am on Evenity and seem to have no side effects. I have traditional Medicare and it is covered 100% under Part B because I have the injections at an infusion center.
Other non-traditional Medicare plans like Medicare Advantage plans are different. They seem to all have different rules about these drugs.
Open enrollment starts October 15 and you can change Part D plans then if you want.
I have never changed my plan because the Part D plan that I have is fine. Also, the Evenity is covered by Part B. Every year, however, I call Medicare - 1-800-med-icar- and review my husband’s Part D plan. He is on a lot of expensive drugs and the formulary changes year to year. This is a project, but important.
I call Medicare during open enrollment and the well trained, helpful person on the phone already knows what drugs he’s on, where he’s getting them, how much they cost, etc. They will then look at other plans with me and we figure out what is best for the coming year. If he changes plans, the Medicare rep on the phone can do that right then.
I have been doing this for 20 years for seniors on Medicare. Now I’m a senior and vigilant about this.
Just remember that the Part D plans are all private entities, therefore, they have a profit motive. Medicare is not for profit and doesn’t care what plan you choose. So, you will get unbiased information from them.