What would you do? Medication.

Posted by babs10 @babs10, Feb 12, 2024

Hi, I am interested in lay people opinions given I have received so much conflicting advice from MDs. It’s astounding and I’m sure I am not the only person who is confused and wary about any decision I make.

I am 68 years old and have significant OP – my T score is a -3.5. I was diagnosed in October. I knew I was genetically predisposed so have regularly exercised since my 20s and have maintained a healthy diet. Since the diagnosis, I have upped the frequency of weight lifting and the use of resistance bands and I am doing what has been advised in terms of diet and supplements.

My Plan D insurance will only cover Prolia and Forteo. I have decided against Prolia and am reluctant to start Forteo. Backing up a little, I enjoy adventurous vacations such bicycle trips and strenuous, long hikes. In September, for example, I hiked a portion of the Camino de Santiago. While training, I slipped and fell three times on big rocks and didn’t break anything. Last year, I took a bicycle trip in Europe. I tried out an electric bike which got away from me and I took a hard fall – it hurt, but no fractures. I know that my bone density is low as reflected by my low T score, but I also believe the quality of my bones is good, and the DEXA score is only part of the equation. One of my doctors said, “Oh, you did your own DEXA test.”

Like everyone, I want to avoid a fracture more than anything so I am willing to consider Forteo, but here is my concern: Is there a chance I might hurt the integrity of my bones by going on it? Might I inadvertently worsen my own situation by taking medication just to improve my DEXA score?

I also want a life plan that needs to last maybe 30 more years. We take a medication for a year or two, then switch to another medication for a year or two. Then what?? None of the MDs I have talked to have had a satisfactory answer. Maybe they are waiting for new drugs to hit the market.

I’m really struggling with the decision. I know I am the only person who can make it, and I will have to be responsible for the outcome, but I would really like to hear what thoughts others have. Thanks so much - any input is welcome.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for lm2 @lm2

lm2 I took fosamax for several months, stopped because of GI side effects, the two years on Reclast, no improvement, one year of Prolia, still Dexa scans did not change. Now I've had 3 months of Evenity which I will stop because of insomnia, fatigue, joint pain. I'm thinking of a medication holiday just to see how I feel without all this stuff in my system that is not working

Jump to this post

I agree. No clear cut guidance. Opinions. In the meantime could ruin your organs

REPLY
Profile picture for mayblin @mayblin

I’m sorry to hear that Prolia hasn’t shown additional BMD gains so far. Sometimes the results can vary from the average expectations. Are you considering continuing with more doses of Prolia, or are you thinking about finishing up with Reclast?

Jump to this post

I have an appointment with my endocrinologist Friday and see what she has to say.

REPLY
Profile picture for counihan08 @counihan08

Hi read all the side effects of meds. To me the chance of ruining my kidneys, other organs sounds worse than just handling the pain with rest.Ibuprofen, heating pad, voltaren gel, patches etc.,etc.
had a broken neck and brain bleed about 5 years ago. A lot of pain with. The neck and back. Still. Declined surgery. Also had Evenity 3 years ago. Result a “significant” improvement in my bones. Still have a lot of pain in neck and upper back due to injury.
Need to do something. Acupuncture or orthopedic treatments. Any suggestions??

Jump to this post

I had good gains with Evenity also. What med did you follow it with.?

REPLY
Profile picture for counihan08 @counihan08

I agree. No clear cut guidance. Opinions. In the meantime could ruin your organs

Jump to this post

@counihan08 - I haven't been here in a while. What do you mean - ruin your organs taking medication or not taking it? Thx

REPLY
Profile picture for counihan08 @counihan08

I agree. No clear cut guidance. Opinions. In the meantime could ruin your organs

Jump to this post

Ruin your organs??

REPLY
Profile picture for babs10 @babs10

@counihan08 - I haven't been here in a while. What do you mean - ruin your organs taking medication or not taking it? Thx

Jump to this post

kidney, heart, intestine, stomach, esophagus
Bones are also considered an organ, so AFF and osteonecrosis

REPLY

My Prolia is fully covered under Medicare B and my supplement, not my D plan. Have you checked your B coverage?

REPLY

I have a similar story, same age and lumbar spine T score -3.4. My hips are -.6 femur and -1.5 neck. TBS shows borderline low quality. My Mom had multiple spine fractures and never broke a hip. She lived to 94, took boniva briefly but did not tolerate it. I am hoping to start low dose BHRT later this week after my CAC results are available. I have avoided meds except for 18 months on evista when insurance changed and too expensive, 18-20 years ago. My goal is to maintain strength and balance and avoid meds as long as possible. Almost all my relatives lived into their 90’s. Good luck!

REPLY

Correct. Bone quality is more important then bone density.

REPLY

I'm supposed to get a reclast infusion and I'm concerned about the side effects. My T score is -2.6 spine.

REPLY
Please sign in or register to post a reply.