Where to even start with bone drugs

@tarzy. Welcome to Mayo Clinic Connect and to this Support Group.

Thank you for including your DEXA results. Those are significant t-scores in the negative range. My DEXA scores were always for just one hip (L) and now with hip replacement hardware in my left hip my right hip is scanned. I had pelvic radiation therapy in December, 2021 through January 2022 and as the radiation oncologist said I lost bone mass. In fact, I had a sacral fracture which is what started me again on figuring out how to manage osteoporosis. Prior to the radiation treatment and sacral fracture I had taken Fosamax for 5 years, exercise with weight lifting, and was careful to get enough calcium in my diet. I had a bone density scan before the radiation treatment and at that time my bone mass was in the osteopenia range and looked good.

I suggest that you have that talk with your doctor to explore all of your options.

My endocrinologist told me that I had optimized everything I could do on my own and with my history of that sacral fracture it was time to consider medication. My mother had osteoporosis and she had two severe fractures in which she was in a lot of pain and very frail. I don't want that quality of life so I'm willing to try what is available to me. I thought about my endocrinologist's recommendation and decided on Evenity for one year and then re-assess. The plan is for 12 months of Evenity, do a bone density scan, and then move to another medication to "lock in" the increase in bone density.

When will you see your doctor to start this discussion on options?

I think you will be offered Evenity most likely. I did Tymlos first and it is very good for spine. The other bone builder is Forteo.

Be careful at the gym! I fractured in several places with scores in the mid- -3's. Tymlos brought my spine from -3.7 to -2.5.

I don't tolerate meds well. Could not handle Fosamax or Forteo. I started Tymlos at a low dose and worked up and my body adjusted.

Today I went for second Evenity and declined the second of two shots (Evenity is two shots) because I did not tolerate the whole dose well last month. Everyone is different. Most do absolutely fine with no side effects.

I think it is good that you talk to a doc about getting on something quickly!

My stomach could not tolerate Fosamax either. I had my first Reclast infusion last year in May, by mid November the DEXA showed improvement, I had gains at all sites, it pulled me up out of osteoporosis level.

I see my GP on Feb 16 but am wondering if I should ask for a referral to an endocrinologist as I see them referred to often on this site.

@tarzy Your appointment with your GP is coming up soon. Are you working on a list of questions you can ask your GP? I think it would be a good idea to ask for a referral to an endocrinologist. Quite frankly, given the knowledge and experience my endocrinologist has I do wish I had been referred to endocrinology awhile ago.

I did see an endocrinologist. She suggested going straight to ReClast as Evenity is too new. I think she ruled out Forteo because of my CLL. Unfortunately, her notes did not get captured on my patient portal.

@normahorn have you started Reclast? If not, can you get a second opinion? Evenity is very potent as a bone builder. You could do just the first part, because it becomes more anti-resorptive in the second half. My docs confirmed this strategy but most do the whole 12 months. If you do Reclast first, Evenity will not be as effective if you use it later. Reclast can lock in gains from Evenity. So many doctors seem to be prescribing it these days.

triciaot,
How was the Reclast? Any side effects?

It was not bad. The evening of the infusion I started feeling achy, I took some Advil and slept okay. Next day I was uncomfortable achy all over. If I had taken Reclast when I was working (retired now) I would have gone to work if it were an office day but then would not have functioned 100%. It was not as bad as having COVID or the flu. I took Advil the entire day, and still felt achy, but not real pain. I think in all it lasted 30 hours. I have had no other side effects since then.
I did drink 2 full glasses of water before I went for the infusion. And I took a Tylenol, as suggested by some medical sites - I got very little direction from my provider.
I should be getting another infusion this May. The cancer rheumatologist says I may then get one every other year if my numbers continue to be good. I see a local endocrinologist that orders the infusion because the rheumatologist is at the cancer center 3 1/2 hrs away. My insurance pays for all of this, with co-pays.

Interesting, I have CLL too @njhornung, my Rheum did mention tymlos would have to be cleared with my oncologist. Disappointed to hear they ruled out forteo for you. My appt with oncologist is in Oct, so I'm concerned I may get that answer too. I might just be crazy by then!!!