How has this impacted your relationship to your doctor/doctors? Has your doctor accepted your decision with respect? Does the topic come up often when meeting with the doctor, and is the interaction stressful? Has your decision impacted other aspects of your health care delivery?
I ask this because my doctor shows signs of being quite resistant to the idea of my not taking meds. I'm not sure that going to another doctor will resolve this issue. At present, I was diagnosed with borderline OP and have decided to have a one year DXA, then reevaluate. Ideally, if my numbers remain steady, I will probably postpone taking medication until I see signs of further bone loss. Thank you for your responses.
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Lynnel17
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I really haven't noticed anything different. I just let them know that I had other opinions and believe it's better not to take Prolia since I really have osteopenia.
I have had osteoporosis for 10 years. My current doctor of the past 5 years has been pushing meds every time we meet. It has impacted our relationship in a negative manner because he feels that there is nothing that works except the meds. He said I can workout daily and do my weight lifting routine, have a great diet (which I do), take all the correct vitamins (which I do) and nothing will help except the meds. Other doctors have recommended the meds as well. I have not fractured nor broken a bone in my entire life. I am currently looking for another doctor. I am 68 and live a very active life of daily hiking and taking care of myself. My mother took all the meds for her osteopenia. She is now 90 and continues to fracture quite often, falls often and has a collapsed spine (lost 6 inches of height). Her Dexa scan 3 years ago put her into the low levels of osteoporosis and she had a reclast infusion last year. 3 months after her reclast her GERD became much worse and her heart valves and arteries also became worse requiring a valve surgery this winter. It appears to me that her route, of following doctors order for the meds seemed to not help her lead an active life.
No, they have gotten worse as I fully expected they would, based on everything I read. My goal has been and continues to be to avoid falling at all cost, which is the real issue for me about bone density. My goal was to wait until I was 70 to decide if I will begin meds since meds are a lifetime treatment plan and cycling off and on is required. I continue to hope better meds will be developed or a breakthrough, which unfortunately may not happen in my life time. That said, proper diet, exercise, balance and proper body mechanics, vitamins one is lacking, strength training is my current plan. I keep up on research in the field and try to remain confident that by doing all this, I at least can avoid fracturing. Currently, I have no other health issues but osteoporosis and do not take any type of meds. I wish you much luck as I know how it feels to be diagnosed and the fear it creates.
I did read the story but how many women can do this strict routine which is also very time intensive. Also, so many locales lack trained physical therapists and doctors who specialize in osteoporosis. Also, the clinic/doctor behind this article also have financial incentives to their site (nothing wrong with that, but noted), also the Doctor in reference when reviewing her research is primarily before 2006. I still feel that the board/pharmacuetical companies that made these machines and determined the test scores to who has osteoporosis deserve attention and question. In particular, the history of Dexi scan machines, scores and how they came about. The New York Times article on this matter is a worthy read.
Yes, the DEXA scanners are odd. If someone told me that I had to have my blood pressure taken using the same blood pressure cuff ir my temp taken using the same thermometer every time, I’d question the validity of those measuring devices too.
I personally think part of the problem is the population that is most likely to get osteoporosis—older women—is a group that is, unfortunately, often dismissed.
I teeter between, I’m not going to fracture and what if. I haven’t made many changes in terms of cutting out activities I have always participated in. If anything, I’ve added some things that might be seen as risky for someone with osteoporosis. For instance, when I leave my house I don’t walk all the way down the front steps. Instead, about 3 steps from the sidewalk I jump.
After talking to a couple of different doctors about what would be a safe exercise program for me so I could start naturally rebuilding my bone and getting no help at all from these doctors, I joined a gym on my own and have slowly increased the weights that I lift—after 10.5ish months I’m now up to 215 lbs (that’s dbl my body weight) on the leg press.
I have my next DEXA next week and although hopeful that my bmd has improved; I’m also prepared in case it had not.
I can't wait to hear your scores and hope that your scores improve. That is excellent you can lift that much weight and according to research I've read, you should see some improvement. I totally agree with most you say especially how older women are dismissed. However, I can't see older women being able to function and follow extreme weight lifting and all the diet and lifestyle changes, esp those on fixed incomes. We deserve more attention to this problem that offers meds that have less side effects. Good luck next week!!!!
I have the results. All of my scans were done on the same GE Lunar scanner. I have had 3 scans on this scanner and have listed my numbers for all three years. So if you look at the first numbers I reported below, for L1 in July 2019 my t-score was -4.5 and in July 2021 it was -3.8 and in December 2022 it was -4.1, according to my DEXAs. My gut feeling is that my L1 in July 2021 wasn't really -3.8, I just don't see why L1 would go from -4.5 to -3.8 and then to -4.1, but that's what the reports show and I did double check the numbers. Also, I think there was something off with my 2019 DEXA w/ regards to my hip numbers. In 2021, my left hip showed a 9+% increase, no other area improved that much and my right hip declined slightly. My guess is that the 2019 DEXA numbers were not right and got "corrected" on my 2021 DEXA to come more into alignment.
July 2019 July 2021 December 2022
LUMBAR SPINE
L1 -4.5 -3.8 -4.1
L2 -4.3 -4.2 -4.2
L3 -3.7 -3.3 -3.5
L4 -3.4 -3.5 -2.9
Total L Spine -3.9 -3.7 -3.6
RIGHT HIP
Right Neck -2.7 -3.1 -2.9
Total Right Femur -3.0 -3.0 -2.8
LEFT HIP
Left Neck -3.3 -3.2 -3.1
Total Left Femur -3.4 -2.9 -3.0
At this rate, (.1 increases) by my late 60s, my bones might be in the osteopenia range LOL.
I have an appt with my endocrinologist this week and I think he is going to say this is evidence that the zoledronic acid is working and push me towards another infusion. I really have no way of knowing if it's the meds or all of my hard work or a little of both, but I am leaning towards not having another infusion and attempting to continue to work on my bones naturally (possibly hire a personal trainer) and I am also considering trying HRT.
I am so glad you asked this because I am worried my doctor will be insulted if I don’t go with Prolia as he recommended but the statistics don’t appear that beneficial when you look at the side effects.
My doctor recommended Prolia in my 40's!!!! Luckily, It sounded fishy to me and I opted out and went to fosomax. What a pity, I did not leave the fosomax as well!
Hi Lynnel17, I am the only one with privileges to change or delete posts in this forum, and I have not logged in in more than a week. Please feel free to repost your response.
My gynecologist prescribed Boniva for my osteopenia. I am not taking it and seeking a second opinion. I am sure doctors have many patients who do not take their meds or otherwise follow recommendations, so I am hardly unique. They should be able to handle it without taking it personally.
It's common knowledge that women world wide do reject meds when diagnosed which is why new treatments are being studied. Also research demonstrates that women also go off them after a year or so, as well as, when the patient also develops secondary issues/side effects that they do not like. That said, research also points to many women successfully taking meds without complaints but I have not been able to find research that backs up long term success, which is why women are demanding new research and new drugs that do not have side effects that are as concerning.
I had terrible reaction to third dose of risedronate. Notified doctor for medical information had shortness of breath and heard crackling sounds when I breath all new. Looking for his now what ? Opinion never heard. So yes I think depends on doctor I guess I got one that is a shut up and take it because I said so. One of the little rich boys ivy leaques schools sure Dad and Mom doctors. Did you detect I have lost all respects for 90% of doctors. If this offends you please scroll on.
Hi Lynne, my endocrinologist respects my decision not to take meds. I did try two and got terrible side effects so I decided to handle this using natural ways and exercising. My numbers improved even though I still have osteoporosis but he is very supportive and was excited to see the improvement.
Great your numbers have improved naturally! Interesting to know about your experience.
My GP looked at my results which were bad, and told me that I do have osteoporosis now. He said that he couldn’t recommend any of the drugs to treat it, because he feels like they are horrible. He just told me not to fall, which wasn’t a huge help! He would probably not be happy if I started a med. I am almost 72.
Falling is the main reason for fracturing with or without meds. A good doctor should always recommend resources that outline how to avoid falling and also proper body mechanics and balance as one ages.
Initially, both my GP-- and especially the orthopedist she referred me to --pushed me to take meds. This was based on my Dexa scan numbers. I paid for my own REMS scan and the numbers were much better. I did my research, defended the REMS scan and convinced my GP that I took the disease seriously. She stopped pushing. The orthopedist never really came completely around and was less open to alternative thinking. Both recommended balance exercises.
Hello Lynnel17, the rheumatologist I used to see, did not take it good, when I said, this year I won't take any medicine. He told me: You will fracture. I came back an year later for the dexa scan, and I was better! I also asked him to tell me exactly how many years I took alendronate in my life. and he did not have an exact response. He gave me an appointment in two years, when he used to see me every year. Yes, he took it wrong, and he also was apologetic for giving me that drug in the past. I switched to an endocrinologist, and I am very happy, she supports my decision of not taking drugs, and exercising and eating a rich diet. I do recommend you to look for someone more open. I like more the endocrinologist approach than the rheumatologist approach.
My primary care nurse, was not able to tell me not to take alendronate, when I went to her for a second opinion. But when I saw her after a year, she said, thank G-d you are not taking that drug. Today, I saw her, and she said: I don't know why this drug is still in use, is a strong drug for anyone!!!!!!!
I only work with doctors that are more open minded regarding treatment. I'm naturally very sensitive to any prescription. I recently found a dual naturopath/ MD. She is awesome and is happy to pursue natural treatments.
My DEXA shows ostopenia now, my body is improving with supplements and exercise. It can be done without big pharma.
Yes, I had the same experience. When questioned, the MD admitted that the bone loss was not great, and she still recommended meds. I haven't seen her since, but I feel this RX recommendation may be an automatic response taught in medical school. No other suggestions were offered. This seems shortsighted to me.
You have the right to refuse any medication you feel may be detrimental to your health. You have employed him as your doctor, and you can fire him. Find someone else who will respect your decisions.
So far my GP is understanding of my “no medication” position. I tried Fosomax and hated it. She suggested Prolia injection but if the side effects are similar to Fosomax, no thanks. I’m taking Citracel along with healthy diet and exercise.
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