Hi, I'm new to this forum and wondered if anyone had any advice. I've got quite bad osteoporosis in my spine (-3.7 T score), and I have osteopenia in my hips. I'm 59, have always been quite thin and not terribly athletic, and lactose intolerant. No fractures yet. The endocrinologist has prescribed Prolia but I am quite chary of taking it, especially after I just read some things in this forum! I am exercising now, and taking a Vit D/calcium supplement and am very willing to do whatever it takes NOT to go on medicine. She originally told me about Forteo--but she also said the insurance probably won't pay for it. Prolia sounds quite dreadful--has anyone had a good experience on it? I'm post-menopausal--is there no other way to build bone? Is Forteo better than Prolia? I have GERD so I can't do Fosomax. Oy vey. Is there no other way? My mother back in the late 80s was diagnosed with osteoporosis or osteopenia (she doesn't remember) and just told them that she was getting older and she didn't want their medicine. She's 84 now and hasn't broken anything. Any advice would be much appreciated. Thank you!
Prolia vs. alternative vs. Forteo? - Osteoporosis Support
Prolia vs. alternative vs. Forteo?
I would seriously question such a huge discrepancy in your hip and spine scores. I was first diagnosed with -3.2 hip -2.3 spine and a follow-up scan 3 and a half years later showed -3.6 hip and -2.5 spine. But then I discovered that some experts believe a difference between the hip and spine scores of more than 1.0 suggests an error may have been made with the scan. 15 months later I then had a REMS scan, which uses ultrasound rather than x-ray and is more reliable than DEXA, and that gave me hip and spine scores the same at -2.6. It's quite possible that one or both your scores aren't accurate, but I don't think you're likely to be able to access a REMS scan in the US (I'm in the UK), though I do believe they're now available in some places there. I certainly wouldn't recommend Prolia as your first medication, particularly as you haven't had any fractures. It's supposed to only be prescribed for those with severe osteoporosis, usually following fractures and preferably not till other medications have been tried first. As you can't take Fosomax, if you did decide you wanted to try a medication, the obvious choice would be a bisphosphonate infusion such as zolendronic acid, which bypasses the digestive system. However, though your spine score is low, on its own, even if accurate, it cannot tell you how strong your bones are, as bone strength isn't necessarily the same as bone density.
You don't say whether you've been checked for any underlying causes for your bone loss. As you're lactose intolerant, it's possible that you haven't been getting enough calcium in your diet, but it shouldn't be assumed that this is the cause. As a minimum, your doctor should test your blood D, calcium, thryoid and parathyroid levels. For example, if you had hyperparathyroidism (not related to the thyroid), that would potentially stop the calcium from reaching your bones. Likewise, how much Vitamin D you take will depend on you as an individual and can't be guessed at - only regular blood D tests can monitor it and guide how much you need to supplement. Many experts recommend a blood D level of over 30ng/ml (75nmol/litre in the UK), preferably at least 40ng/ml (100nmol/litre).
If you're serious about avoiding meds, welcome to the club! You'll need to get exercising - as high impact as is safe for you, but build up gradually - ideally eventually things like dancing, jogging, hopping, skipping, jumping, but initially regular brisk walking and heel drops will be a good way to get started. Balance exercises are important too, as by reducing the risk of falling you significantly reduce the risk of fracturing! Use weights and resistance bands too, though it's recommended to do this under supervision of a professional who understands osteoporosis. High impact exercise has been shown to improve bone density. But equally important is a healthy diet (high calcium, magnesium and protein, low sugar, caffeine and alcohol), plus many of us take a variety of supplements. At a minimum it's recommended to take Vit D3 (not D2), and K2-MK7 or K2-MK4 (K2 helps send calcium from your blood to your bones). Calcium is usually best from diet, but if you can't achieve that due to your lactose intolerance, just supplement sufficient to make up any shortfall. Many people also supplement with magnesium, boron, zinc and Vitamin C.
Let us know what you decide and how you get on!
Dear Met00, Thanks for all the great information. Yes, I have gone through all the tests and they haven't found anything underlying although my Vit D is typically on the low side. I have joined a zoom osteoporosis exercise class which has been incredibly helpful and I am definitely getting stronger and have better balance. I just read on this forum about the COMB study--is this something that has been considered effective? It made me think about doing some more supplements...I will follow your recommendation about K2 and the other supplements. I was intrigued about the REMS scan and the possibility that this was a reading error--although I think my back is definitely less strong than my legs--not sure if that's an indication that ones bones are less strong as well. The doctor did mention something about the spine beginning to disintegrate --although I'm not sure how they can see that, and I think that's why she recommended Prolia. I"m going to try to find a REMS scan in the states and go from there--I find this whole process quite difficult to make a decision--I feel fine, but they say I am falling apart. I'm healthy, but one day I won't be. How scared do I need to be? According to doctors--scared enough to take a really scary medicine for the rest of my life. According to the Internet--well, maybe there are alternatives? Eesh. Thanks again for your words.
It's so hard to know what to do for the best, isn't it? If only we could actually watch what's happening to our bones, rather than having to rely on equipment (DEXA) that at best can only give an estimate of bone density and assume that bone strength is related to that. It's easy for doctors to look at scan results and say we're falling apart - sometimes some doctors resort to scare tactics, which I personally believe are totally uncalled for. My doctor implied that I was at very high risk of breaking my back and ending up in a wheelchair, but I know believe her to have been totally mistaken, as I hadn't had any fragility fractures to suggest that might be the case, and as I've since learnt, my spinal t-score isn't anything like the DEXA scan suggested. In fact, assuming the hip score was accurate, that would mean that I was first prescribed (and took) meds when hip and spine were probably both in the osteopenia range. Bisphosphonates didn't agree with me at all, so I've taken nothing pharmaceutical for my bones for the last 5 years and so far have survived to tell the tale!
The REMS scan equipment is produced by a company called Echolight, which seems to have an office in the USA, so you might find it useful to contact them: echolightmedical.com/products/ (scroll to the bottom of the page for contact details).
Have a look at my story as you may get some ideas from that. healthunlocked.com/pmrgcauk...
Thank you HeronNS--that's all very helpful. I am down the rabbit hole alright, researching just about everything, and it helps to get someone else's personal experience. I think I need to take more supplements and I'm going to look into Nordic Walking! I wish there was someone out there specializing in natural treatments for osteoporosis--there's so much information it's overwhelming. And I used to be a librarian! And MET00, I have gone to the website for REMS--we'll see if I can get a scan here in the US. Thanks to both of you for the information.
There's a new Wikipedia article about REMS. Not all of the applications of REMS are currently available in the U.S. en.wikipedia.org/wiki/Radio...
Hi Catbones, my situation sounds almost exactly like yours...and I'm curious about finding a REMS scan as well. If you find an option in the US, could you please let this group know? Thanks!
Hi everyone, well I've been researching more and it's still very confusing. I haven't been able to contact Echolight (the firm that is introducing REMS to the state) so I'm going to call them tomorrow and see if I can figure out where to find a clinic or doctor who uses this technology. I read the wikipedia article and found it really interesting. I will let you know if I find out a place that actually has one!
This is all great info.... I too have been debating whether to get that Prolia injection or not .... since my insurance doesn't cover it, I think it's a blessing in disguise..... It's so helpful to read these optimistic comments because that gives me hope that I can survive without any of these horrible medications.... It's unfortunate because there doesn't seem to be many options for us.... all the meds out there cause serious side effects and they barely improve bone density. I', 58 and My T-score is -3.2, which is advanced osteoporosis of my spine and perhaps I should be taking something, but I already tried Fosamax and I experienced bad GERD and tried Evista also, which gave me leg cramps..... I'm the club of "no meds for me" club.... I am exercising, supplementing and trying to eat a healthy diet. Thanks for this forum.... I feel that I'm not alone on this journey..... Prayers for healing for everyone!!
Thank you all for your stories and responses. My situation sounds exactly like Catbones. All of the information out there gets confusing and I don’t know what to do. I had a bad reaction to Fosamax years ago and I haven’t taken any other meds for osteoporosis. My endocrinologist now wants to put me on Prolia, but after reading many comments on these forums, I think I am not going to take it. My biggest concern is my spine as it seems to be getting worse. I going to “study” everyone’s responses again and use your information and tips to develop a plan. Thank you all for sharing.
Hi Catbones! I was diagnosed with osteoporosis in 2006. I took fosamax for a minute and did not do well with it. Went for a second opinion from a homeopathic doctor and he suggested estrogen and progesterone. I immediately felt so much better, sleeping at night no hot flashes. I was told based on my medical history I could take estrogen up to 4 years. I took it for 2 and my dexiscan went from -3.5 to -2.8, this is my spine. Also had improvement in my hips but was not osteoporotic in my hips. I’m now at -3.6 six years after stopping estrogen. Osteoporosis runs in my family. My current doctor wants me to start forteo and like you I’m trying everything natural first. I have been doing Osteostrong program for 7 months and so far no improvement. Also trying “B” vitamins along with calcium, K, D and magnesium. Also trying silica drops and marine collagen. Since starting the collagen have seen dramatic improvement in my nails. I’m inquiring about starting estrogen again but will do the research first. I have heard tai chi is excellent for bone strengthening as well as balance. Good luck to you 😇
I am in the same situation as you. I was recommended 9 years ago at age 50 to start Fosemax. I never went on it. My journey to find the right answer is ongoing. I went to a Bone Specialist 4 years ago and she wanted to put me on Forteo. I declined and left it alone. I am thin 5'7 118 pounds and workout 5 days a week, 2 days strength training, 2 days cardio and 1 day swim. I tried doing Low acid diet. Honestly, nothing has worked and my t-score in my spine is now 4.2. It increased 13% since my last DEXA scan 4 years ago. I am giving up hope that I can do this on my own without meds. It is frustrating that there has not been much progress in this area of science.
Dear Cashewchocolate and Kaligirl and everyone else--I'm still researching and haven't yet decided what exactly to do (except not take Prolia). Several people have suggested what Kaligirl was on--that is bioidentical hormones, especially estrogen. But I'm not sure that would help me as I'm about 9 years from beginning menopause. The trouble with almost all of the drugs or hormones--if you go off the drugs you lose whatever it is you gained! So if you take Prolia you have to relay to Fosomax. Or if you take Forteo you have to go on Fosomax. It seems like there's no way around it. Anyway, if I find something of use, or find someone to help me (there seems to be two chiropractors who both have osteoporosis and have written books who take on patients...I might, if I can scrounge up the money, go to one of those people) or decide to get a bone transplant (jk) I will report back. In the meantime the exercise is making me stronger, and occasionally calm, and along with the vitamins I am taking a collagen that is supposedly great for bones, and a probiotic that is also supposedly good for bones. Who knows. It could all be money down the drain. I think exercise is key. I watched a video that explained how bone is made--it was fascinating and showed how vibration and stimulation of muscle SEVERAL TIMES A DAY is key to bone growth. Remember the old days when they told us that the brain couldn't be changed after age 3? And now brain plasticity is all the rage. I am really hoping that bones are also somewhat malleable-despite their dire predictions of our spines and hips! Good luck to everyone!
I improved my bone density from -2 to -1.6 in one year, more than half that year still on a dose of prednisone above 5 mg. I did not take any drugs. This was now nearly five years ago so should really have another DXA scan. However if interested in what I've been doing, here, once again, is my story:
I took bioidentical hormones, Estrogen, Progesterone and Testosterone for 7 years, post menopause. I got diagnosed with Breast Cancer two years ago. Possibly related to bioidentical HRT? I will never know for sure, but immediately cold turkeyed off all hormones, had Lumpectomy and Radiation for breast cancer, and so far so good. I am struggling with what to do about my Osteoporosis diagnosis.
HI Catbones and all, Thank you for all your information. This area of science is so far behind and it is so frustrating. I have just been using the avoidance method and now that I am going to turn 60 this year I feel I need to try something else. I may go to a Functional Doctor (Naturopath). It good to know I am not alone. Stay in touch and let us know how you are all doing!
Have a look at this, already shared above a couple of times:
I am a 67 year old male, who three years ago had four fractures and found out he had osteoporosis. They started me on Prolia and I have been on it for 2-1/2 years with no side effects to speak of. I think it helped initially, but since I have had more fractures, my doctor wants me to go to Evenity. Have to wait five months, until Prolia is out of my system, before I can start. Sssoooo, from my experience, I don't have anything bad to say about Prolia and have had moderate success with it.
Hi 👋 This is just me, but I sincerely wish I’d never started PROLIA (if you do, please make sure you keep injections exactly every 6 months, no later than that 182 days apart. My Primary doc mishandled this terribly & I was unaware in the beginning .& no longer than 4 years.) I’m glad you have an Endo, thou my Endo only has time to rush in, suggest PROLIA or Evenity & rush out.)
I’m currently working out with Osteo Strong & looking at Bone Coach workouts I hope to stay drug free once I’ve transitioned off PROLIA.
My spine is at -2.8, have fallen twice & thankfully, never broke anything
Best to you, my friend.
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