List of questions for the MD - what do you wish you had asked?

Yes, I did and it went well, thanks for asking! The MD spent almost an hour and a half with me. I sent a summary to a friend and will include it here:

This is an older, very experienced MD. He is an 80 year old gentleman and knows his stuff based on his vast local, national and international experience.

He asked me about any falls/fractures and also if I have lost height. His standard is that if you have lost more than 1.5" it is a strong indicator of OP and its severity. Along with fractures, it is one of the top determinant within his practice. If someone has lost height he tests for silent fractures to check for an OP diagnosis because once you fracture from a "non traumatic event," your bones are considered osteoporotic. He also considers balance (says to do balance exercises every day b/c the vast majority of fractures are from falling vs. spontaneous).

When the T score was developed, they had to decide on a severity scale and wondered if severe should be at -2.0 or -3.0 and they compromised and settled on -2.5. Not exactly scientific, but that became the standard. He said that there is hardly any reimbursement for DXA scans anymore and, as a result, almost 50% of the machines have been taken out of practices (especially smaller practices).

He asked about my family history and had reviewed my blood work, etc. Nothing stood out except age and being post menopausal. That's what I figured. He said I can't compare myself to my mother b/c she was on prednisone for many years and that has such a big and significant negative impact on bone density.

He confirmed that the DXA score is only part of the equation - there is also the bone quality and strength.

He wasn't concerned about me only being scanned on one side. He said there is usually minimal variation. He gave me a list of places to go for a DXA that have TBS software so I might do that on my own. He said that it was developed in Switzerland but the raw data isn't the best and he says it might indicate a partial measure of bone quality. I haven't looked into cost. He was "meh" on Echolight/REMS. It seems like he's fine with DXA scores and not impressed by new technology, but that's a guess on my part. He said that for many practices, Echolight/REMS is a money maker not an evaluation that reveals discrepancies or sheds new light that changes anything. Often, the place that offers them will be like Osteostrong and the people don't know how to interpret the results. My impression is that he thinks of them as more of a novel gimmick. He said that when you get a DXA, make sure you go to a place where the techs have ISCD certification - that is the indicator that they are trained.

When he prescribes Tymlos on smaller framed people, he starts with 4 clicks and builds up to assess tolerance. He gets a baseline CTX and P1NP on every patient. He retests 3 months after starting medication and then every 3 or 6 months depending on the patient and the baseline/follow up results.

He recommends 1200 mg of calcium/day and said to get as much as you can from food. The Chronometer app is an easy way to track it. He said an easy way to supplement is to take one Citracal with vitamin D per day. There are some contraindications for certain conditions (hypothyroidism when person is taking synthroid is one) so would need to check that.

He embraces Felicia Cosman's medication sequencing - don't start on bisphosphonates if what you really need is an anabolic.

He prescribes Evenity for 12 months and then an antiresorptive. He likes Reclast. He also said Evenity has practically no side effects which does not seem to be accurate based on anecdotes from the various forums I follow, including this one. I wonder if it has to do with severity of the symptoms?

An aside: He said the price of Forteo is so high because of Alex Azar who was Trump's secretary of health and human services. He was a top manager at Eli Lilly and was directly responsible for the steep increases of insulin and other drugs including Forteo - this lined the their pockets. They created the generic teriparatide, but only decreased the price by 20% so it's still unaffordable for many people who make more than the financial assistance cut off, but do not make enough to pay up to the $8000 cap per year.

He said with my T score, if I was 70, he'd put me on meds, but because I am younger than 70 and have a personal trainer, work on balance, am doing my exercises, have changed my eating, he doesn't think there is any rush. He told me to keep doing what I'm doing. I had the blood work done on Friday and will meet with him after that. Whatever those numbers are could change everything.

Evenity has the best outcome for hip fractures (that's me). I have fluctuating blood pressure (since I fell and hit my head) and was diagnosed with blood clots at a college infirmary in my early 20s (not sure it was accurate) so I'm not inclined to choose that, but we'll see.

I liked him a lot better than the others I've seen and I appreciated that he took the time to get to know me a bit. He asked me many questions about my interests, my lifestyle, etc. It was kind of a throw back to the olden days. I am working on a list of follow up questions for my next visit.

The wisdom of elders! I like his reasoned measured approach! Thanks for sharing all of that.

@glojo, I suspect some will agree with what he said and some won't. At some point soon (probably when I get my blood test results back), I'll have to decide to trust someone with my care. It's not an easy decision (for me anyway).

No it is not easy at all. I’ve seen several different people as well, and am probably just looking for someone to tell me what I want to hear! A naturopath interpreted my REMS and declared my bones were normal, based on Z scores! As much as I’d love to ride off into the sunset believing that, I find that highly suspect. But who knows, she may be right. Toss the dice again.
This guy sounds like Paul Miller in CO. I’ve enjoyed his videos.

@babs10 did he tell you the reason for your hip reading, which is an outlier? This doesn’t reflect the normal bone loss pattern in post menopausal women due to estrogen deficiency.

Could you share your bmd readings for different areas? Thanks

Would you mind sharing your DEXA numbers? Can you offer any details on what activity or movement caused your fracture? Thank you.

Do you mind sharing your age?

Hi @babs10,

Sorry I’m just now weighing in on this subject. I wish I had the benefit of this group when my rheumatologist said “Normally with your scores I would not prescribe Tymlos or Evenity, but since you’ve had 3 or 4 compression fractures, you’ll be approved”. He then proceeded to tell me he would submit “my” request for Tymlos. Period, end of story! I asked about Reclast because I had good results previously and was told that Tymlos has had very good results. I asked about Evenity because I really did not relish having to stick myself 730 times! He said that Evenity carries the risk of cardiovascular issues and, without consulting with my cardiologist, went ahead with the Tymlos. Btw, I was cleared by my cardiologist a few months earlier. I felt railroaded.

Fast forward about 3 or 4 months and I felt like I’d been hit by a truck! I put up with the issues for another 5 or 6 months and finally told the doc I’d had enough. He got me approved for Evenity.

If I had it to do over again, I would’ve gone with my first instinct and asked him to prescribe Evenity. I was a bit concerned because my husband and I travel a lot and it might be tough to be at home during the window for the Evenity shots. That said, here are some things I thought about after the fact:

- I would ask for a comprehensive list of what meds are available for both building and maintaining bone, including orals and injectables.

- Once the initial course of treatment is finished, what’s next (before I agree to the med). What can happen, physically, if the treatments are stopped.

- How long can I use this medication? How long after this treatment is finished do I have to begin the next treatment. I would ask the questions about the next treatment as well.

- Find out how much the treatments cost and what are the copays.

- In my case, because Tymlos a is self-administered medication, it was billed under Part D insurance (this is for those of us on Medicare + Advantage). However, as Evenity is administered in the doc’s office, it’s billed differently and there is no “donut hole” assistance. There may also be assistance to pay for these meds from other sources.

- Here’s how I look at it: We can ignore our weak little bones and hope for the best or we can spend the big bucks now and “invest” in a stronger, longer life - not in pain, not in a chair, and hopefully not in long-term care. No disrespect meant for Dr. Suess!

I guess to sum it up, I would want to know what meds are available (all of them), what they cost, what the side effects are, what comes next and what comes after that. Make an informed decision based on your individual needs and desires. I wanted stronger bones and to reduce the chance of serious, debilitating future fractures, surgeries, etc.

Best wishes and cheers to everyone on this journey!

@sirrom I am 68.

@glojo It IS Paul Miller! How did you know?