What would you do? Medication.
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.
Gosh! That must have been shocking for you! How are you doing on Tymlos?
I'll definitely post about it. I was on a roll getting this underway when I fainted/hit my head. It probably won't happen until summer because of my job, but we'll see. I have a feeling my root cause will be menopause.
Well no new fractures! Have adjusted to the side effects, finally, around the 6 month mark. Keeping fingers crossed!
I am the proud owner of four compression fractures in about six years. To the best of my knowledge, none of them were from falls - lifting and/or twisting seem to the bane of my existence.
I’ve taken more than my share of hard falls, once down hard wooden stairs and once from the top of a 6-foot ladder onto a tiled floor, but picking up a small bit of snow with a shovel was the beginning of the “I know I have osteoporosis” era.
Sadly, docs have been NO help in this journey. At some point, while taking Tymlos my breathing became so shallow, due to pain, that I was afraid to go to sleep for fear I would just fade away. My doc never associated the meds with my horrible and frightening symptoms. I’m not sure docs consider our lifestyles when prescribing meds. I was approved for Tymlos (and subsequently Evenity) because of my fractures, not necessarily due to my t-scores at that time. I get the impression that if I had not lived an active lifestyle, I might not have suffered the fractures, and would not have “qualified” for any of the bone-building meds.
I felt it was important to mention bending, twisting and lifting because so many of us have thought our bone quality was better than the DEXA said, and that we were safe, based on falling and not fracturing. I got three lumbar fractures from a movement similar to putting a bathing suit on in the car. My DEXA scores were low and these were obviously osteoporotic. I should mention that I was active and doing sword tai chi during that period and felt strong- misleading! COVID delayed my Tymlos, which probably was a contributing factor too.
Twenty years ago I slipped on ice steps ( topd step fo 4), went in the air, landed with my back on the corner of the concrete bottom step. That kind of fall- traumatic- gave me 3 thoracic fractures and scoliosis. I did not yet have a diagnosis of osteoporosis.
Bending over lifting excessive weight (60 pounds) is what caused my fractures. I have fallen and not fractured. Obviously, trying not to.
Thank you! Had not heard to focus on femoral neck! That means I have even more of a problem. Yes, after L2 fracture, I’ve given up many activities that could cause a fall, it’s frustrating, but I’m
Thankful for the activities I can do-water therapy, including lots of muscle strengthening exercises and traction in the pool that has provided lots of pain relief, and increasing weight bearing exercises on land and resistance training, no heavy weights.
I totally am with you! Ohydicisns daughter here who has had the “best” medical care. I’m angry that most of my physicians haven’t kept up with science since WHI. Sometimes do no harm, is doing something, not avoiding hrt! I was told since I had endometrial cancer and a family history of breast cancer never ti take estrogen. What a load of bs. Now, taking estrogen, progesterone, and testosterone (as my anabolic) with blessings from
Obgyn, cardiologist (estrogen great for Lp(a), Vit K not so much, and “quiet” blessings from oncologist. Yes, I’m post menopausal. Hope this works before I fracture again. I have really low BP, so worried about Tymlos. I exercise over two hours a day now to avoid being old lady, but life has drastically changed. Even with kyphoplasty, I still have pain from disc damage which limits outings requiring sitting. You are spot on that make establishment feels about post menopausal women. Testosterone is still only in panel in US for low libido even for people without ovaries! That is bad medicine.
To the stat that 1 in 8 women will get breast cancer, that’s a scare statistic! 7 of 8 won’t get breast cancer! And, the stats are relative to age! I wish I could post pic from book written by oncologist about real breast cancer risks. My breast surgeon thinks I should have been on hrt it for a long time, but my endocrinologist scared me away,
Also, with use of bone drugs, you have to look at absolute risk reduction as opposed to the sales pitch, of relative risk reduction if you really want to compare benefits vs. side effects. I know it’s depressing to read that absolute risk reduction isn’t very good, but taking meds, with for some people, possibly bad side effects, risking low BP and dizziness causing falls, no exercise tolerance, and possible cardiac effects down the road just doesn’t make sense to me for most people. Uninformed doctors and big pharma are selling false hope imho. And, don’t get me wrong, I think big pharma does some things well. Unfortunately, in life sometimes we learn that there isn’t always a great fix to things. Hard to deal with and we have to do the best we can. It’s unfortunate that we have to do so much research ourselves, but thankful for this forum of people who do it!
when I was in college, I had a sore spot on my shin. I went to the infirmary and the MD said I had a blood clot. I don't know what he based it on, there were no recommendations aside from going off birth control pills, no follow up, and I've always wondered if I truly had one. I haven't wanted to take hormones for that reason.