Worried about the safety of bone building meds.

How about sharing a bit more about you situation. Dexa scores, your age, etc. thanks

Hi Helmit! You might investigate Evenity injections 1/month for 12 months - it is touted as the most recent& best Bone Building Osteoporosis treatment. I just finished my 12 months and looking forward to seeing DEXA results. I researched the group of Osteoporosis drugs cautiously bc I have liver issues and always leery of kidney harm (I also have heart concerns).
There is a BlackBoxWarning for Evenity for heart; I think this warning is overblown and they will remove it. You need to talk with docs, but more importantly patients on whatever drug you are considering - then make your decision. Few drugs have no side effects - Evenity’s were: occasional light headache, little twinges on bones from torsos to toes that went away quickly. If I felt a little achey after the injections I would take a nap. Sometimes an ice or heating pad felt good. But Nothing I ever felt I needed to call the doc & complain about!
I wanted strong bones and to lessen my odds of fracture… for me this is worth a small ache along the treatment route.
Please do your research, make your plan and give your treatment all the positivity you can muster. I know you can do this.

Are you sure your doctor is asking you to now take a bisphosphonate? Because I don't think that's considered a bone-building drug. It's the same drug as Fosamax (and Reclast), which you said you already tried but had GERD issues when taking it. Bisphosphonates work by slowing down bone-break down, which also slows down the bone building process. They are supposed to maintain your BMD because you are retaining old bone.

I believe bone building drugs are those such as Forteo, Tymlos and Evenity. But once you quit taking them, you will have to take a bisphosphonate of some kind (Fosamax or Reclast) to keep any BMD gains you made.

Ask your doctor the specific name of the drug they want to prescribe. Then, remember that bones change very slowly so tell your doctor you want to take time to investigate the drugs available before you make any decisions.

Also, as mentioned by another person here, it would be helpful to know your DEXA scores and your age.

Hi @helmit

For what it's worth, I've pretty much exhausted the bone building/maintenance drugs that are available at this time. Although my doc wants me to start Prolia, I have steadfastly refused to do so. I'm patiently waiting for the next great breakthrough . . .

At my last appointment with my rheumatologist, I asked him if I could again try the oral med route because it had been about 15 years since first attempting to treat my OP with them. They caused some pretty nasty stomach issues. He stated that Reclast has the same effect of maintaining bone growth (achieved through Tymlos/Evenity) and was better for me because it bypasses the digestive tract and does not cause gastric distress . . . GERD.

Additionally, and it should be noted that my heart issues aren't really issues, my cardiologist cleared me for Evenity (2023-2024) in spite of the black box warning. Best thing to do here would be to get an opinion from a doc if you're worried about taking Evenity; I would do another round if it were ever approved.

I know the choices can be very scary, but you have many members here who are willing to help! Happy June, all! Cheers!

This has not been defined yet, but I have had rapidly extenuating neuropathy extending up from my feet to my legs, ending at my knees since taking IV Reclast. I have just completed a thorough evaluation, including EMG and bloodwork from a neurologist. The thought is that this is a result of my Sjogrens auto immune system kicking up and possibly not necessarily a direct result of the IV Reclast. However the timing is there and I do know that my immune system is now reacting. I-will further communicate with my rheumatologist. There IS a side effect of tingling, numbness and changes in sensation in some people listed with zoledronic acid (Reclast).

@daisy17
Spine BMD: 1.184 g/cm2, T-score: 0.0, Z-score: 1.8.
-AP Spine Interval Change - Previous: 5.4%, Significant
-
-TBS Region: L1-L4, TBS: 1.341, TBS T-score: -1.4, TBS Z-Score: 1.3
-
-Femur Neck Left BMD: 0.689 g/cm2, T-score: -2.5, Z-score: -0.4.
-Femur Neck Right BMD: 0.608 g/cm2, T-score: -3.1, Z-score: -1.0.
-
-Femur Total Left BMD: 0.776 g/cm2, T-score: -1.8, Z-score: 0.1.
-Femur Total Left Interval Change - Previous: -2.3%
-Femur Total Right BMD: 0.680 g/cm2, T-score: -2.6, Z-score: -0.7.
-Femur Total Right Interval Change - Previous: -3.0%
-
- Left Forearm 33% Radius: BMD 0.588 g/cm2, T-score -3.3, Z-score -0.7.
- Left Forearm 33% Radius Interval Change - Previous: -4.5%, Significant
-

@dbamos1945

I had great results with Evenity also and no noticeable side effects.

@dbamos1945 United Healthcare(my insurance) will not cover Evenity. Can you share how you paid for the monthly injections?
I’m 64 and will go on Medicare & some type of secondary insurance in the Fall

@meitene616: It may be best to wait until Fall when you qualify for Original Medicare with a Senior Supplement insurance including drug coverage through UnitedHealthcare. This is the medical insurance I chose and it has served all my healthcare needs. When a claim is sent to Original Medicare they pay their 80% and then UnitedHealthCare pays their 20% (drugs are chosen from their annual drug formulary with cost tier scales until you reach a O$ Castistrophic Scale Level and then you pay nothing for approved drugs remainder of year)!
During the last few years I was diagnosed with NET cancer and having this particular insurance package has saved my life! I have never received even one bill for any of the many tests, procedures, treatments or expensive drugs that I have received. I never needed a referral from my doc either. Hard to believe but true!
Original Medicare (NOT Medicare Advantage) will give you options to go to any dr/specialist/cancer hospital/etc that you may need in your future. I can’t emphasize enough what a critically important decision this is for you to make. Remember: You get what you pay for - and without your best health you have nothing!!!
The medical insurance industry has turned into a yearly frustration. Be Careful of the “free” insurance groups who will control what & when you receive tests, drugs, referrals, all your medical assistance. They decide - not you what you need & take their sweet time with approvals (Denials will be done promptly)!

I know this process to shift over to a different medical insurance seems difficult. It can be confusing and the agents don’t want is best for you and your family. Be careful talking with all the medical insurance hookers… sometimes they lie or misrepresent the true facts of a package. Some say”take this program now because you can always switch over to Original Medicare later”; however, I have heard patients who do report that this includes certain “exclusions of care” - not the same coverage that you get if you choose Original Medicare from the first sign up.
The reliability from year to year of many insurance groups fail and all groups make changes in their programs yearly or more often. Consider this in your decision.
You decide what you and your family should chose, but I beg you to consider the BIG health picture vs. monthly premium payment. Best to you.

@meitene616

Will you be signing up for original Medicare and a supplemental with ubh?