Have a Dexa T score of -4.2 Two spinal compression fractures plus a more recent wrist break where the end of the arm bone has crumbled away. Also one shoulder joint has been taken out because damage was so bad.
I believe long term use of asthma medications have largely contributed to my osteoporosis. I'm sensitive to medication, am unconvinced from what I have read that medication increases bone density or strength in the spine.… read more
Hi Dido...sorry for my slow response as I don’t get on here every day.
Yes, I was on Forteo (which is daily injections.) I did get 11% increase in my spine, my left hip stayed the same and my right hip got worse....go figure?! Forteo is the only osteoporosis med that actually grows bone. Now they have me on Prolia which helps slow bone loss and will help preserve the bone the Forteo grew.
My bone health specialist said the FDA just approved a new drug that is like a combination of Forteo and Prolia. Now they have to get it on the market and get insurance companies to pay for it.....which probably will take time because I’m sure it’s expensive!
The calcium I take is called Garden of Life mykind organics. I also take D3 that is gluten free and soy free. My bone health specialist told me to take it with fat (like with a handful of nuts) because it absorbs better.
Hope things are going well for you!
Hi Nikky. I'm so sorry to learn of your difficulties and indeed many or most people on this site. We are all different yet have many elements of our stories in common.
The biggest help I have found is a twelve foot, u shape, deep filled pillow which I bought from the internet. Pregnant ladies sometimes use these to sleep more comfortably. This pillow supports me totally, it feels like I'm sleeping in a cuddle, although it does take up a lot of room in the bed. This pillow eases the pain in my neck, shoulder, back and is exactly the right height to rest my broken wrist on. If I had a partner he probably would not like this huge thing in the bed. Do you know what? The best thing about the pillow is ........it does not snore!
When will doctors learn, sometimes simple things help us? We don't always want drugs which cause other problems in the long term.
From my own research, osteoporosis drugs may increase bone density, but this is not the same as bone strength. I am choosing to go against doctors offers of medication and learning everything I can to help myself. The sun is shining outside and it is warm, rare in England in February. So I'm off to take a little walk in the sun.
I wish you the best. Take very good care of yourself.
Dido, there's the spirit I knew you have!
Do you know why the Strontium Ranelate was taken off the market for a bit? That would be good information to have. Also check out AlgaeCal's web site, they sell a Strontium supplement but I don't know if it's the Ranelate formula.
I also hate osteoporosis. It can be so wicked and robs us of many of the things we love to do, as well as our confidence. Further, there is no cure, or even a bone stabilizer, that works consistently. I believe that Prolia does increase bone mass - dead brittle bone as it inhibits our osteoclasts from carrying the dead stuff away. I haven't read where any of the meds stimulate our osteoblasts to build healthy bone. This is also a disease that's been around for centuries, but just recently has the medical community recognized it and really started researching it. I believe that there will one day be a "cookie cutter" cure that works for everyone, I don't believe that will be in our lifetime. When you read studies (funded by big pharma who I don't trust), many of them say (drug name) IS BELIEVED TO WORK BY..... they're not even sure!!! I believe that's why they recommend that various meds only be taken for X number of years before stopping, because they have no data on long-term side effects, the drugs are too new. I think we're unwilling and uninformed lab rats when we "try" these meds. I'm not paranoid, neither am I ignorant. Big pharma shoves money and freebies at our FDA and doctors to get these meds approved and prescribed. There's data available to support this.
OK, I'm going to climb carefully off my soapbox, sorry I got carried away. But I can tell by your posts that you're intelligent and have done your research, too. I suspect we share some thoughts and ideas.
When do you see your Consultant or doctor again? As we don't use the term consultant as a medical title here, are they they equivalent of a physician's assistant (more training than a BSN, less than a doctor, work under a doctor who assumes responsibility for their practice)?
Stay strong, in body and mind. And write me anytime you feel like it, I enjoy your posts! 💚
Hi Finnlander. I think my doctors have finally accepted that I have made an informed decision not to take medication. For me, I believe the risks are too high when weighed against a result which cannot be guaranteed.
The pharmacists I have spoken to, all say that bone density is not the same as strength. They say that medications can make bone more brittle and so more likely to fracture and break.
Like yourself I think that good quality nutrition and supplements are the way to go.
Thank you again for your response to my question. You are the only one person of the many replies I have had, to confirm an increase in bone density. I hope they continue to work positively for you.
Take very good care of yourself.
Dido, again I have no info on the big pharma drugs, but I have a lot of experience with advocating for loved ones and myself in the medical arena! This is YOUR body the doctors are treating, do not allow them to bully you into anything you're not comfortable with. Our mental and physical health are intertwined and if you start a drug you're afraid of, that may cause you anxiety which will not help your body. Doctors are just people with more training than we've had in many arenas, but I'd be willing to bet you know more about osteoporosis than your doctor does - unless (s)he or a close loved one has it and that motivated them to study it closer. What's wrong with telling your doctor what you'd like to try for your body? If you don't advocate for yourself, who will?
I'm not familiar with Strontium Ranelate, but to choose it I'm certain you've done your research. The doctor can't argue side-effects, effectiveness, etc. with you - neither of those are valid points when compared to the known facts on the big pharma drugs.
My doctor is a fan of the big pharma drugs and I told him point blank I will never take them. We have agreed to disagree on that matter and he still treats my other health issues and helps me manage my pain.
YOUR body, YOUR choice! Be insistent but polite. I think your doc may surprise you with being willing to work with you. If not, find a doctor who will. You're in this battle for the rest of your life. Fight it with your weapon(s) of choice!
I'll be cheering you on from afar! 💚