Undecided choice of drugs for Osteoporosis

@gently I'll tell him!

Hi,
I'm new to the board. I was just diagnosed with osteoporosis (left femoral neck -3.5, L1-L4: -3.0). I'm only 54yo, no symptoms, and very strong and healthy (weight lifting regularly for the past year and a half). I'm stronger than I have ever been in my life. I haven't broken a bone since I was 13. I actually asked my primary to order the Bone DEXA on a whim, fully expecting her to come back and tell me I had the bones of a 20 yo. I was devastated to see the results. I had an appt with a rheumatologist yesterday and her recommendation was Reclast infusion. (She wanted to start me on an oral medication but when she learned that I had a hx of ulcerative colitis (many years in remission) she was excited to tell me that insurance would approve skipping the pills and going straight to the Reclast. This is all brand new to me. I have always leaned towards Naturopathic approaches. Even with the UC, I chose to forego all traditional treatments and managed to stay symptoms free for 8 years now. Her advice was that my T-scores were too low to "play around with natural treatments". I asked her abut the AlgaeCal program and she said the Strontium element in it was ill-advised and gave misleading DEXA improvements. Reading these posts, it seems traditional medicines may be my best option. However, the general consensus seems to be that Forteo would be the place to start rather than Reclast. There's a part of me that wishes I never got the DEXA scan and could go forward feeling strong and healthy. Instead, I feel like I stumbled into a world of contradicting evidence, side effects, risks and confusion. Any input or advice is so welcome.

Good evening, @ahmeyers. Thank you so much for presenting Connect with a good introduction to your current medical issues and concerns. I totally understand how someone .... you, in this case, can feel devastated by the results of the first DEXA scan, especially a young, active, and healthy 54-year-old.

Then I read your first post again and realized that I felt the same way. The only difference is that I was not 54 when I was diagnosed...but 75. I am not a fan of what I call M&M..., medical maintenance. My mother never mentioned osteoporosis to me so I don't know if she had to deal with it. She lived to be 87.

What a shock to be thrown into this complicated and as you say confusing world. To top it off you have also walked into the complex and challenging world of medical insurance.

It just happens that I have a very good friend who probably could have written your post. She is a yoga teacher and is in her third year of Reclast infusions which means that she is not building bone. It does appear that you have three choices for building bone, Forteo, Tymlos, and Evenity. I am beginning to see more Connect members talking about making sure you explore the bone building first before you move into a maintenance option.

My choice was Tymlos and I had no side effects for the entire two years. I found it easy to do the daily injections myself.....particularly because it kept my body from having to deal with large amounts of medication over time.

One of the things you might try is to call the manufacturers. They all have medical staff to help you learn about the product. At Tymlos they are right there to support your efforts after you begin the program.

And one more suggestion for this evening.......the bone builder options can be spendy. However, all three of the manufacturers have financial assistance programs that might help you make your decision.

So....hang tight.....take your time.....and ask questions. I am here for you as well as an interesting collection of ladies seeking similar assistance.

May you be safe, protected and free from inner and outer harm.
Chris

Dear Ahmeyers,

I said exactly the same thing - I wish I'd never gotten a DXA scan! Since receiving the terrible news about my spine, I've become increasingly nervous about hiking and exercising, including the yoga I have done for years. Like you, I prefer to manage my health naturally. I have learned so much in the past few years, bit by bit, that I wish I'd known at my first diagnosis. Taking calcium supplements, for instance, is much more complicated than just taking a pill. I've learned that phytonutrients from nuts, seeds and whole grains can inhibit the absorption of calcium. For the first year after my first DXA, I took my calcium immediately after a breakfast of oatmeal, blueberries, walnuts and flax seeds. Ack! By my understanding, that calcium bonded with the phytates and washed right out of my body.

Most recently, I've started working with the Integrative Medicine Department at the University of California at Irvine. I see an herbalist there who immediately recommended adding K2 and fish oil to my supplement regime. She suggested Nordic Naturals, as she has done a third party review of their ingredients and is confident of their integrity. I also went to an excellent physical therapist who helped me to learn core strengthening and balance exercises, to help me avoid a fall.

This week, I received the book Great Bones, Taking Control of Your Osteoporosis, by R. Keith McCormick, DC. I'm super impressed by his comprehensive discussion about the metabolic process involved in bone-building. I really, really wish I'd had this book to study four years ago. If I had, I might not be facing Evenity at this point. My OP is the result of having overactive parathyroid glands (a common condition for women). I only have one parathyroid left, and it's doing a good job, so my endocrinologist feels that the bone building medications that simulate parathyroid hormone would be too risky for me. The plan for me is to take Evenity injections for one year, and then switch immediately to Reclast to maintain the bone building we hope to achieve with Evenity.

I hope this information is useful for you. I feel exactly as you do - I'd much rather manage this naturally, but it seems that it's too late for me. I'm between a rock and a not-very-hard-spine place.

All my best to you,

wilkenlmw

@wilkenl I'm glad that I read this post of yours, because I though I was the only one fidgeting about calcium issue.. I also read that phytates and oxilate could bind to calcium and interfere with its absorption. Like you, i thought im eating all these healthy food together for breakfast etc., not knowing they are probably best not to be taken together. Now I take my kefir on empty stomach before breakfast and at bedtime. Not sure if this tweak will make a difference.

Dr. Connie Weaver from San Diego did interesting studies where she used calcium isotope to monitor intakes and output. Her research showed differences among races and gender in absorption and output, as well as some of the nuances when we think about calcium. Very impressive. She also mentioned (If I remember correctly she did the study) that 10grams of soluble corn fiber (also 2/3 cup of blueberries, or 5-6 prunes) enhances calcium retention in the body:
https://youtu.be/sMPy-dVEfOw?si=FxEDcTQ3LqnxtvaY

If video doesn't load, look for osteoboston, interview with Dr. Connie Weaver in yt

wilkenl and Chris,
Thank you both so much for your replies. I really want to figure this out . Before I knew anything about my bone health, I started lifting because I got a late start with kids (I have 15yo twin girls) and I figured if I want to be an active grandma, I better get off my keister and start building muscle. wilkenl, I just got that book in the mail today! I ordered that and
Lies My Doctor Told Me: Osteoporosis: How the Latest Medical Research on Bone Drugs and Calcium Could Save Your Bones, Your Heart, and Your Life. Either of you familiar with that one?
I would love to find a good naturopath. Unfortunately, S. Florida is a bit of a wasteland for alternative medicine. I wonder if telehealth is an option. The west coast seems to be housing some of the best docs. Also, when you say "its too late for me" to manage naturally, is that based on your DEXA score? At -3.0 and -3.5, my rheumatologist felt that it was too late for me to explore that route. I'm not sure yet.
Chris, Thank you for all the advice. I'm curious what made you choose the Tymlos? If I am indeed going to start one of the bone building meds, my biggest concern is hair loss. I know strong bones are more important than a head of hair but I spent five years growing it in after losing much of it as a combined result of an overzealous hormone doc and his testosterone pellets combined with the stress of a uc flare.
Thank you again- its nice not to navigate this alone. I love smart women. There's nothing we can't do 🙂
Amy

Forgot to ask- any recommendations on calcium/d/magnesium supplements? Every time I settle on one I find criticism on the ratios, amounts etc. I just purchased New Chapter Bone strength (which is criticized for ratios of Magnesium to Calcium). I am also am strongly considering Algae Cal (which my doctor did not approve of but I think she may be misinformed). That too doesn't have the 2:1 calcium magnesium ratio that seems to be the recommended ratio. If a company that does nothing but manufacture bone supplements doesn't use that ratio, surely there's a rationale. I think I should dive into McCormick's book before asking any more questions. I have a feeling I will get a lot of them answered.

You might find this source (NIH) helpful on Ca:Mg ratio.

@normahorn did you come across calcium and phosphorus ratio or balance? It's surprising that dairy and high calcium containing bone-in fish like sardines have such a high amount of phosphorus. Maybe that's what's "wrong" about dairy... In the end, op patients are just having too much metabolic inadequacies in this complex bone matrix

Deciding which path to take for osteoporosis treatment is so hard. I’ve had 3 doctors tell me not to take the drugs (one was an orthopedic surgeon) and 2 to tell me to take them. My plan of action is to do everything humanely possible to stop or reverse osteoporosis with diet, supplementation and exercise for 2 years, then see how my Dexa scores have changed. In order to do that I have researched extensively what to do. I highly suggest reading Keith McCormicks books and The Calcium Paradox by Kate Rheaume-Bleue. Also, watch Dr Doug Lucas YouTube and read his book. I also am working with a functional medicine doctor for my diet and supplementation. Margaret Martin is a wonderful source of what exercises are best. Best of luck on your journey.
Let me add that part of my decision to not take the drugs right away is based on my mothers life. She was a petite, frail woman who didn’t eat dairy so her calcium consumption was low. She also didn’t eat highly processed food, everything she ate was “from scratch”. She fell on a regular basis due to a neurological issue( she would black out). She NEVER broke a bone or had a fracture. She lived to be 90!