Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@pennykj

I am also in Florida. I am seeing an osteoporosis "specialist" in Orlando and she is encouraging me to go on osteo meds. Before my bloodwork, and just based on a DXA, she leaned toward Evenity. During the second visit, since my CTX was high, she was leaning towards Prolia. My third visit is in about a month and I am guessing she will continue to suggest Prolia. I am doing whatever I can to avoid prescription drugs because they scare me. (I purchased a Marodyne LiV platform, am eating 6 prunes a day, eating mostly organic and healthy foods, walking daily, strength training 3x/week, avoiding alcohol and limiting caffeine, taking quality supplements and collagen). I am researching bioidential HRT, but I am 16 years post menopause so that may be risky. I plan to ask my osteo doctor about HRT and I am guessing she will say no. I am also in the process of searching for a second opinion since I predict my doctor will disappoint me again during the next visit. I am considering Dr. Bush at Central Carolina Othropedic Associates (who uses Echolight REMS); Mayo Clinic in Jacksonville; a functional medicine doctor locally (if I decide on bioidential HRT).

Jump to this post

I agree the prescription drugs scare me too.

REPLY

@pennykj if you watch Dr. Ben Leder's video on Sequencing and Combinations or read Keith McCormick's book "Great Bones," it is suggested that we do bone builders before the anti-resorptives.

If your doc wants Prolia you might ask about the best sequence of meds and whether Forteo, Tymlos or Evenity might be the best first choice. I am noticing so many docs are prescribing Evenity instead of the other two! I chose Tymlos because the pen dose is adjustable and I could ramp up slowly. I did not do a full dose until month 22 and still had excellent gains.

I would also ask the doc how they expect you to get off Prolia. The transition to Reclast is very tricky in terms of timing with a need for testing of CTX. This is also covered in McCormick's book which might be available in your library. My docs won't use Prolia unless every other drug is not possible.

REPLY
@gravity3

I would ask any provider if they have any affiliation or receive compensation from any pharmaceutical company.

Jump to this post

I agree that we should all ask this question. It feels like a radical thing to do, but it’s totally appropriate. I think my rheumatologist would react badly to the question. My endocrinologist would not. Both of them wanted me on Evenity. I receive my 5th injections next week.
I haven’t had any trouble, although no one knows what the long term side effects are.
My Medicare Part B pays for the injections. When I received my EOB from Medicare the charge for the injections was $5,000+ each time! This is more than the surgeon charged for my hip replacement. This is a lot of money for a 30 minute injection. I think when that kind of profit is possible there is motive for unethical behavior. It was my understanding that physicians could not take kickbacks from pharmaceutical companies.
Having been in the medical field, I have seen pharmaceutical companies furnish doctors offices, gift them with season tickets to professional sports team games, buy lavish meals, etc.
the companies can invite doctors to sit on advisory boards and provide other incentives to prescribe drugs.
So, we always hear that this isn’t allowed, but it happens in plain sight.

REPLY

I am in a similar situation. Age 64 and post menopausal for 16 years. I would love to start HRT, but my family doctor says it is risky as there is a family history of heart problems. I’m still trying to decide what my 20-25 year plan will be to stop my bones from eroding further. I’m worried diet and exercise will not be enough, and I don’t want to risk lower T-scores so I’m trying to decide my best course of medication action. This is such a daunting decision.

REPLY

I am struggling as I"m only 51 yrs old with -3 T scores and I don't want to be on drugs for possibly 20-30 yrs....if I Live that long. I opted to start on HRT soon as menopause hit, which in itself has been utterly miserable and taking a toll on every part of me as a very petite person. Where are the studies of safety for being on any osteoporosis drugs that long? What if you start and stopping makes it worse? Drugs just feel too scary so I'm just in hospice for my bones at this point.

REPLY
@windyshores

In my opinion and various experts too, the problem isn't medications, it is the sequence of medications that MD's are prescribing. Every doc I know (and McCormick's book, Leder's MGH video) ) say bone builders first but insurance requires failing the anti-resorptive in many cases, and docs have to go along.

Neither of my docs, or McCormick, uses Prolia at all if they can help it, due to the risks to bones when stopped and the trickiness of timing getting onto a follow up regimen of Reclast.

It is also interesting that so many docs are prescribing Evenity instead of Tymlos or Forteo.

Jump to this post

I just had my follow up phone appointment with Dr. McCormick. At this point, I have had all the tests done with my CTX score being in the mid 600s, my estradiol being 9.1, my P1NP result was 63.6, and my Alk Phos was 124 (it has been high since 2017). What he is suggesting now is a four month regimen of Osteostim 4x/day, Reseveratrol Supreme with Quercitin 2x/day, one scoop of Collagen/day, ultra low dose, bioidentical estrogen/progesterone patch, and doing a five day urine ph test to see if I need two additional supplements. We do this for four months, retest everything except the P1NP, and if my CTX score has come down to 300 or so, then we're good. If not, he would then concur with my endocrinologist who recommended that I go on Reclast infusion for a year.

REPLY
@sandrajhunt

I have had those same thoughts but tell myself I am just being paranoid and to let it go. But I know that pharmaceutical sales people can be very persuasive and the pharmaceutical companies make fifteen billion dollars a year on osteoporosis drugs. We are their targets….an older sometimes vulnerable population who just want to live longer and better. I am 76 and have avoided drugs since a really bad reaction from Boniva. But since my last scan revealed a -3.4 in my lower spine, I have an appointment with an endocrinologist and will go in with an open mind and the hope that he has good advice.

Jump to this post

I'm in the same situation as you. I am 73 and my last scan in 2021 showed -3.2 in my lumbar spine. I am having another scan in three months. My endocrinologist wants me to start Prolia, which I am very reluctant to do. Please update us on what your Dr says and what you decide to do.

BTW, this info is from an article I read: Drs and pharma companies often present bone drug benefits as "relative risk reduction", which is often misleading. For example, in the context of osteoporosis, many bisphosphonates reduce the relative risk of hip fracture by 40% compared with placebo. Although this sounds impressive, the absolute benefit in terms of hip fractures prevented in osteopenic women...corresponds to a reduction from 12 fractures per 1000 women treated for six years to 8 fractures. This equates to an absolute reduction of 0.4%, 100 times less than the RRR.

REPLY
@pedsnurse61

I share your concerns also, but the bottom line is none of us want a fracture anywhere. I am a retired RN and unfortunately have expensive horrible Health Insurance since retiring. I would have gone to see an expert at the Mayo Clinic ( I live in South Florida) but I would have had to pay out of pocket because they are not on my plan( the cost would have been extremely expensive) Everyone has a different journey when it comes to taking medication. I am a rare one that no ( 4 total) medications have ever worked for me. My latest MD has encouraged me to be very careful, take supplements, eat healthy, and continue to do my daily exercises. She did persuade me to take Fosimax because she is worried about a compression fracture in my spine. The best way to make any decision is to Educate yourself as much as possible and to feel comfortable with your decision.

Jump to this post

How long have you been on Fosimax and have you had good results with it? How about side effects? My last scan almost 2 years ago showed -3.2 in my lumbar spine and my endo wants to get Prolia injections.

REPLY
@windyshores

@pennykj if you watch Dr. Ben Leder's video on Sequencing and Combinations or read Keith McCormick's book "Great Bones," it is suggested that we do bone builders before the anti-resorptives.

If your doc wants Prolia you might ask about the best sequence of meds and whether Forteo, Tymlos or Evenity might be the best first choice. I am noticing so many docs are prescribing Evenity instead of the other two! I chose Tymlos because the pen dose is adjustable and I could ramp up slowly. I did not do a full dose until month 22 and still had excellent gains.

I would also ask the doc how they expect you to get off Prolia. The transition to Reclast is very tricky in terms of timing with a need for testing of CTX. This is also covered in McCormick's book which might be available in your library. My docs won't use Prolia unless every other drug is not possible.

Jump to this post

Thank you for your response. I am currently reading Dr. McCormick's book, which I purchased from Amazon.

At this time, I am reluctant to try any osteo drugs (including bone builders and anti-resorptives). I absolutely do not trust the pharmacuetical industry and am hoping for a more natural alternative.

I am in the process of getting a cardiac screening (ordered by the osteo doctor when she thought she was going to prescribe Evenity). My stress test is next week and my consultation with the cardiologist is mid-October. I plan to ask the cardiologist about HRT.

REPLY

I increased exercise for a year after my endocrinologist prescribed Reclast, but my numbers got worse. I decided it was risk-reward. I really don't want fractures or hunching, and finally got the infusion in June. My side effects were mild - night sweats and chills for a few hours, stayed in bed and read. I am thinking of starting Osteostrong this month. My doc thinks I'll need one more infusion.

REPLY
Please sign in or register to post a reply.