Pressure from dr to go on meds. DEXA ... - Osteoporosis Support

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Pressure from dr to go on meds. DEXA worse every time. Severe osteoporosis on every measure. Drug side effects or risk of fractures? Arrgh!

Zulu-girl profile image
27 Replies

I’m thin, Caucasian, post menopausal, mother has osteoporosis - perfect storm. In 2009 I had a normal DEXA scan. 2018 full blown osteoporosis in femur neck and spine. In 2020 osteoporosis in hip as well. Now the numbers just keep getting worse -4.1 on one of the scores. I wanted to do diet and exercise, but it doesn’t seem to be working or I’m not doing the right things. 2019 I had a very severe fall from 5-6 feet high onto concrete and rocks and did have some spine fractures and broken tail bone, as well as hairline fractures in the tops of my legs (landed in a sitting position.) By the grace of God, it wasn’t worse, could have been terrible. ICU for 2 days to determine if surgery was needed which at this point, it hasn’t been. Spent 3 months in a body brace, only to trip over a large cello case at church that someone negligently left open on the floor where it was not easily seen. This caused no fracture, but severe stenosis in my cervical spine that has led to potential surgery too. Praying at every 6 month follow up MRI that no surgery will be required. And it has just added further complications to the decision.

I thought I had a stress fracture in my foot last week because it turned black and blue from seemingly no injury. MRI showed no fracture, but did reveal severe fat pad atrophy, which with osteoporosis could render a fracture at some point. However I am mostly concerned about spine fractures and hip fractures. God forbid!

I went 9 years without a DEXA scan because I thought why bother? I won’t treat anyway. But had I done them more consistently I might have been scared straight at osteopenia (and started calcium + D) instead of dealing with full-blown osteoporosis now. I stupidly wanted to avoid radiation but after those fractures in my spine, I had tons of radiation. Still, on one hand, you might say my osteoporotic bones could have done worse during a fall from such a height onto such a hard surface, right?

I am blessed to have the opportunity to take whatever medicine I want - Prolia, bisphosphonates, etc. The problem is, I worked for many years in the pharmaceutical industry and get very concerned about side effects. My mother went on bisphosphonates for a short time when I was younger and had horrible joint pain. I already have acid reflux and worry about the esophageal impact. I thought about getting Invisalign braces but not sure that’s a good idea with treatment, due to concern for jaw necrosis. I am pre-diabetic (despite being very thin) and if you read the fine print in these OP treatments, comorbidities such as diabetes can render a person more vulnerable to side effects, such as femur fracture and jaw necrosis.

There are natural supplements (such as AlgaeCal) which claim to actually build bone, but it’s really the strontium ingredient that skews the DEXA scan and results in an overestimation (up to 50%) of the increase in bone density. So people taking this product have a false sense of improvement that isn’t accurate.

Equally confusing/disturbing are “experts” who question the disease state of osteoporosis, and whether it is simply a creation of the pharmaceutical industry? That’s not entirely impossible!

This is such a tough decision. I made the wrong one by avoiding a DEXA scan with an unfounded concern for radiation because actually it has a very low level. I don’t want to do the same thing and regret not starting medicine.

Then again I read so many accounts of side effects from people who post that wish they had never started. Such a difficult decision.

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Met00 profile image
Met00

Have you been offered a bisphosphonate infusion instead of tablets, as this bypasses the digestive system? You need to be aware that if you do start Prolia, should you ever stop taking it you have to go straight on to a relay medication to reduce the risk of rebound fractures. The relay medication is usually a bisphosphonate! If you're relayed onto a different medication, that will almost certainly also need to be followed by a bisphosphonate! If you're in the US, you'll discover that they're very anti strontium citrate, because it has the same main ingredient as strontium ranelate, which hasn't been approved in the US (but is approved in the UK). As you say, strontium can give a false DEXA reading; however, it has also been shown to reduce fracture risk, which is what's important. The main concern with strontium is that it can cause heart problems in those who already have issues and can raise blood pressure.

I feel for you in your dilemma. It's good news that you didn't fracture when you tripped over the cello case, and your fractures from your nasty fall in 2019 were definitely due to trauma. So there's some possible good news, in that your bones may be strong, despite poor t-scores. Bone strength and bone density aren't necessarily related. The other thing I wonder is how accurate your t-scores are. If you're small-framed, DEXA will underestimate your bone density (something to do with it being a 2-D scan that tries to produce a 3-D result!) Would you be happy to share all your results from 2009 and most recently? Were the scans done on the same DEXA machine?

Zulu-girl profile image
Zulu-girl in reply toMet00

Thank you to EVERYONE for such awesome advice! Met00 thank you so much for true insights. I have been told by an endocrinologist that being 5‘5“ and 103 pounds might in itself give a biased view of my bone health. I had only recently read that about the strontium and cardiac concerns, so I appreciate the information to clarify.I am turning 60 years old next month. I realize as I get older, I need to let go of the idea that I can always get by without medication. That’s SO hard to do! As I mentioned, I worked many years in the pharmaceutical industry and despite (or maybe because of) that, I am very medication hesitant.The DEXA info I have handiest is from August 2020 and September 2022. AP Spine (L1-L4) in 2020: bone mineral density was 0.621 gm/cm/sq with a T score of -3.9.AP Spine (L1-L4) in 2022: BMD = is 0.596 gm/cm/sq with a T score of -4.1(*4% decrease)Left femoral neck 2020: BMD was 0.636 gm/cm/sq with a T score of -1.9Left femoral neck 2022: BMD = 0.607 gm/cm/sq with a T score of -2.2(*5% decrease)Left hip 2020: BMD was 0.665 gm/cm/sq with a T score of -2.3Left hip 2022: BMD was 0.643 gm/cm/sq with a T score of -2.5(*3% decrease)Left forearm 2022: BMD = 0.416 gm/cm/sq with a T score of -4.6.*Clinical follow up recommended to include calcium and vitamin D supplementation, weight bearing exercise, drug therapy including bisphosphonates or hormonal replacement, as indicatedI remember asking if it was the same exact machine and because the facility had been remodeled the technician couldn’t give a definite answer, but thought it probably was. It is a different machine from 2018 and 2009 however. In 2009 before menopause my DEXA scan was normal. In 2018 one of the measurements crossed over into osteoporosis (I can’t remember which one, but I’m going to guess spine) and the other two were approaching or in osteopenia range. So it is definitely a downward progression. I thought about an infusion to avoid esophageal impact of bisphosphonates, but the femur fracture/jaw necrosis concern is still an issue.I’ve considered Evista which is a selective estrogen receptor modulator, and offers the added benefit of breast cancer reduction in menopausal women - but on the flip side carries a risk of blood clots and stroke.Despite my low BMI/weight, I am prediabetic with an A1c that ranges from 5.7 when I eat fairly well to 6.1 when I don’t. However, my blood pressure is exceedingly low, often readings such as 93/64. Each of my grandparents lived into their early 90s, but my maternal grandfather had TIAs, my paternal grandmother had ‘cardiac issues’ that I don’t know the specifics of. Some of my 5 siblings have high blood pressure and diabetes. A paternal aunt had lost both legs to diabetes, despite being tall and thin.A different paternal aunt had breast cancer at age 80 and after a double mastectomy lived until 91. A paternal cousin was treated for breast cancer at 52 with a recurrence at 70, and she is now 75 years old. Because of this family history and I haven’t had children, I am told my risk might be higher. (God forbid, don’t want to start thinking about that!)My father died at age 75 of a Parkinson’s related condition, my mother is alive at age 79 and healthy (other than osteoporosis).I keep rethinking (and overthinking) every nuance to treating + risk/benefit - and really only succeed at getting wrapped around the axle, so to speak. I have never posted on a forum like this, but I must say I’ve already had comfort from hearing from people who are going through similar things and are willing to offer their experience and advice. Again, thank you!

Carolenaa profile image
Carolenaa

I’m so sorry to hear all that you’re going through. May I please ask your age? I’m also trying to decide whether to go on meds. And like you, I don’t want to. I’m 60. Thanks.

Zulu-girl profile image
Zulu-girl in reply toCarolenaa

Thank you so much for your reply! I am going to turn 60 years old next month. I am predisposed to over-analyze side effects of medications because of my many years working in the pharmaceutical industry. I really am hesitant to go on any of the current medications available. Thank you for being understanding about this difficult decision!

Lynnel17 profile image
Lynnel17

Met00 has given you so.e sound advice. I suspect that even if your scores might be somewhat different in remeasurement, they're pretty advanced now. I'm someone who has been holding off on medication for a little while but, if you want to know what I'd do in your situation, I'd use the medication at your T score and fall history. Could the side effects be any worse than your anxiety about what to do and what the future might hold? Find a doctor you like and let him or her guide you. I would be very cautious about choosing Prolia. But most importantly, please forgive yourself what you did or didn't do in the past. I see my past mistakes in judgment as being like accidents along the path of life. I've had decision accidents; I've made wise moves. In the balance, maybe there's a bit of a deficit. Life's too short to beat yourself up over mistakes though. Allow the regrets, allow yourself to experience the beautiful things that are along your path now and in the future. I don't usually give personal advice, but I was inspired to do so here. I hope that this is helpful and not too personal. I wish the best for you. I will be thinking of you today.

yogalibrarian profile image
yogalibrarian in reply toLynnel17

One of my favorite quotes (that I often use with my yoga students)....

I have given up all hope of having a better past. That is forgiveness.

Zulu-girl profile image
Zulu-girl in reply toyogalibrarian

Awesome quote - thank you! ❤️

Zulu-girl profile image
Zulu-girl in reply toLynnel17

Thank you for your thoughtful reply! I love your perspective on regrets about past decisions, very wise advice. ❤️

Zulu-girl profile image
Zulu-girl in reply toLynnel17

Thank you so much for your kind words, and for thinking of me! I love your perspective on forgiveness for past decisions❤️

FearFracture profile image
FearFracture

I went through menopause very prematurely (early 30s). In 2017, I was diagnosed with Hashimoto’s hypothyroidism—after adjusting meds a few times, I’ve been taking 75 mcg of levothyroxine daily since sometime in 2018. I am 4’11”, no height loss, fair skinned, and although I currently weigh 107 lbs, until around 2016, my weight had fluctuated between 92 - 101 lbs.

I had my 1st DEXA at age 50 and my lumbar t-score was -3.9. If you want to see all of my numbers, including the results for my December 2022 DEXA, check out my bio, there you will find several links, one is to a post on this website with all of my DEXA t-score details.

I’m happy you are recovering from your fall. I sharing my story so you will know you aren’t alone. I haven’t had any fragility fractures and it sounds like you haven’t either, which is a good sign.

I’m assuming at this pt you have also experienced menopause. Women shed a lot of bone in the yrs around this—both when peri menopausal and the yrs immediately after. I did not do HRT (a result of the horrible medical system in the US at that time) but women who do HRT have seen improvements in their BMD—HRT is exactly prescribed for osteoporosis but you might want to talk to your doctor about it. Even though it’s been over 20 years since I went through menopause, I’m currently considering HRT just for the potential bone benefits—it might not work for me but I figure it’s worth a shot.

Also in my bio, you will find links to a bone turnover marker test pdf and a link to a list of tests Dr. Brown (BetterBones.com) recommends having prior to starting meds. There may be something else going on with you that caused the bone loss—if someone has undiagnosed Celiac or parathyroid gland issues, osteo-meds aren’t the solution, meaning you need to address the underlying issue first.

Zulu-girl profile image
Zulu-girl in reply toFearFracture

Thank you so much for your reply! You actually hit on something really important that I had noticed in my previous bloodwork, regarding parathyroid hormone. I really like your comments about HRT, as well.

Just my 2¢- looks to me like you already know how debilitating it can be when we break our bones. I have discovered that being conscious of my moves may not be enough. Sometimes the unexpected can happen The dread of the next fall limiting my mobility to wheelchair is reason enough for me to chose meds along with the supplements and moderate exercise . At 76 it’s the best I can do . Check out your + and - ultimately It’s a decision we have to make for ourselves .

Stay well

yogalibrarian profile image
yogalibrarian

Wow. That is a lot going on.

First, consider the news stories. Scary stories sell newspapers and "clicks." Success stories-- even though there are far more of them-- don't. (And people with complaints are more likely to post reviews than people with positive experiences.)

Second, I'd love to see more stories about the real consequences of not diagnosing and treating osteoporosis/osteopenia earlier.

Third, refer to the fable of Henny Penny/Chicken Little who believed the sky was falling. He stirred up his barnyard friends and they all went off to warn the king that the sky was falling (which it wasn't) and ignored the very real danger of Foxy Loxy (who ate them). I think fractures and their consequences represent a much greater danger.

Fourth, doctors have an arsenal of different medications and delivery options. It's important to work with one who will figure out the right one for you and if necessary fight to help you get i.

Fifth, diet (including calcium and vitamin D) and exercise are important for everyone. But if you have already had a fracture and/or have medical conditions that might put you are risk for secondary osteoporosis, they are probably not going to be enough.

Sixth, "fracture beget fractures." It is true for several reasons. Fractures may signal underlying bone fragility. Fractures create conditions that can weaken bones. A fracture can put your alignment and balance "out of kilter" putting you at risk of a fall that could lead to another fracture.

So, take a couple of deep breaths. Don't be scared off by the headlines as you work thru your decision making.

Good luck.

Zulu-girl profile image
Zulu-girl

Thank you to EVERYONE for such awesome advice!

Met00 thank you so much for true insights. I have been told by an endocrinologist that being 5‘5“ and 103 pounds might in itself give a biased view of my bone health.

I had only recently read that about the strontium and cardiac concerns, so I appreciate the information to clarify.

I am turning 60 years old next month. I realize as I get older, I need to let go of the idea that I can always get by without medication. That’s SO hard to do! As I mentioned, I worked many years in the pharmaceutical industry and despite (or maybe because of) that, I am very medication hesitant.

The DEXA info I have handiest is from August 2020 and September 2022.

AP Spine (L1-L4) in 2020: bone mineral density was 0.621 gm/cm/sq with a T score of -3.9.

AP Spine (L1-L4) in 2022: BMD = is 0.596 gm/cm/sq with a T score of -4.1

(*4% decrease)

Left femoral neck 2020: BMD was 0.636 gm/cm/sq with a T score of -1.9

Left femoral neck 2022: BMD = 0.607 gm/cm/sq with a T score of -2.2

(*5% decrease)

Left hip 2020: BMD was 0.665 gm/cm/sq with a T score of -2.3

Left hip 2022: BMD was 0.643 gm/cm/sq with a T score of -2.5

(*3% decrease)

Left forearm 2022: BMD = 0.416 gm/cm/sq with a T score of -4.6.

*Clinical follow up recommended to include calcium and vitamin D supplementation, weight bearing exercise, drug therapy including bisphosphonates or hormonal replacement, as indicated

I remember asking if it was the same exact machine and because the facility had been remodeled the technician couldn’t give a definite answer, but thought it probably was. It is a different machine from 2018 and 2009 however. In 2009 before menopause my DEXA scan was normal. In 2018 one of the measurements crossed over into osteoporosis (I can’t remember which one, but I’m going to guess spine) and the other two were approaching or in osteopenia range. So it is definitely a downward progression.

I thought about an infusion to avoid esophageal impact of bisphosphonates, but the femur fracture/jaw necrosis concern is still an issue.

I’ve considered Evista which is a selective estrogen receptor modulator, and offers the added benefit of breast cancer reduction in menopausal women - but on the flip side carries a risk of blood clots and stroke.

Despite my low BMI/weight, I am prediabetic with an A1c that ranges from 5.7 when I eat fairly well to 6.1 when I don’t. However, my blood pressure is exceedingly low, often readings such as 93/64. Each of my grandparents lived into their early 90s, but my maternal grandfather had TIAs, my paternal grandmother had ‘cardiac issues’ that I don’t know the specifics of. Some of my 5 siblings have high blood pressure and diabetes. A paternal aunt had lost both legs to diabetes, despite being tall and thin.

A different paternal aunt had breast cancer at age 80 and after a double mastectomy lived until 91. A paternal cousin was treated for breast cancer at 52 with a recurrence at 70, and she is now 75 years old. Because of this family history and I haven’t had children, I am told my risk might be higher. (God forbid, don’t want to start thinking about that!)

My father died at age 75 of a Parkinson’s related condition, my mother is alive at age 79 and healthy (other than osteoporosis).

I keep rethinking (and overthinking) every nuance to treating + risk/benefit - and really only succeed at getting wrapped around the axle, so to speak.

I have never posted on a forum like this, but I must say I’ve already had comfort from hearing from people who are going through similar things and are willing to offer their experience and advice. Again, thank you!

Met00 profile image
Met00 in reply toZulu-girl

Those are big losses in bone density in the last two years, as on average you would only expect to lose 1% per year. Have you had blood tests to check for underlying causes? You need calcium, vitamin D and parathyroid in the same blood draw (because they interact with each other), thyroid, coeliac and full blood count.

Crawldad profile image
Crawldad

So sorry everything you have been thru. I tried risedronate I had terrible side effects. Went great until third week. My last oncologist never informed I had osteoporosis found out when I had a compression of spine. I know the new doctor an endocrinologist is getting disgusted with me. I have a virtual appt coming up. Wondering what the most important questions to ask it will be to discuss a new med. I would like to try calcium and K ? Already take D. Thoughts?

I know he is going to mention reclast infusion I am 74 and have awful time with drugs and side effects.

I cannot imagine all of you younger women making these decision. These drugs for osteoporosis are horrible and I’m not convinced they do much. Best to you Zulu girl

Zulu-girl profile image
Zulu-girl in reply toCrawldad

Thank you! I hope the best for you, too! I’m still struggling with the situation.

paxom profile image
paxom

Gosh, do I relate to almost everything detail you shared! Thank you so much for your sharing of your situation. I have osteoporosis, among other issues, and am supposed to see a doc about treatment, but feel so conflicted. It really helps to hear other people's thoughts and experiences, even if one doesn't figure out an immediate solution.

GoldPhoenix profile image
GoldPhoenix

Thanks for all the comments. I can so relate to this. I am at a crossroads right now needing to make a decision to get on medications. I have severe osteoporosis in my hip (-3.5), forearm/wrist (-3.3), spine is less severe at -2.0. I am very conflicted about medication, as there are really no good options. Zoledronic acid IV's are being recommended. Have heard horrible stories about this medication causing such pain, etc. Am curious whether others have tried this medication and what your experiences with it have been. Also, while I think I have taken all the right steps thus far in my journey in determining treatment options, I am wondering what steps others took in making their own decisions? I have had extensive bloodwork, have ruled out any secondary causes, have repeated DEXA scans, researched medications, etc. I get calcium through my diet, take vit D, and exercise (although, probably not enough!). Would love to have any resources you can share. Does anyone know if the vibration plates are effective in building bone?

in reply toGoldPhoenix

Hi! I had my first zoledronic acid infusion 3+ months ago (after completing 12 mos. of Evenity injections and before that, 2 years of daily Tymlos injections). I am 59 and had osteopenia on my baseline postmenopausal DEXA 8 years ago. Decline in BMD on DEXA 3 years later but still osteopenia. 15 months later at age 54 I suffered 5 pelvic fragility fractures from doing home PT exercises with resistance bands. My muscles and tendons were far stronger than my bones unfortunately. I had many imaging tests and another DEXA which then showed one measurement at -2.5 but others still in osteopenic range. (Since I fractured I would have been diagnosed as osteoporotic even if that one measurement had been better than -2.5.) I am an RN by background and was dumbfounded that something like this could happen. I was referred to rheumatology and the provider recommended oral bisphosphonates or Prolia. I had done my own research and asked for an anabolic med instead (Tymlos) so that I could try to build some new bone as my bone clearly needed help. I pleaded for several bone turnover marker tests before starting treatment so I could have a baseline for bone formation & resorption levels. The provider does not use these tests but did order them. My baselines of course were not optimum as I had multiple healing fractures at the time. Through the Tymlos educator I learned of a clinic in my area that had a DEXA with TBS software. I began getting my DEXAs at that facility so that I could have TBS scores in addition to BMD scores. My TBS scores have been in the -4s to -5s, despite BMD scores in -1s to -2s. TBS gives an indirect measure of bone quality (microarchitecture) vs. bone quantity (BMD scores). Explained how I could fracture so easily just doing resistance band exercises. We still do not know *why* my bone quality is so poor. All of that being said, while I did not get improvement from 2 years of Tymlos treatment - and only slight improvement with one year of Evenity treatment (a newer anabolic that decouples formation/resorption, unlike Tymlos & Forteo) - I also did not have any major side effects from treatment. Starting 24 hours after the zoledronic acid infusion, I did have fever, nausea & severe muscle and joint pain for about 48 hours. I knew that was possible but it was worse than I expected. It was short lived though. No other side effects thus far. I have been told that the first infusion usually is the worst one. I chose the infusion because with my GI issues I knew I could not tolerate oral bisphosphonates. I now am seeing an endocrinologist at a local academic medical center for yearly followup and that provider (along with the clinic that performs my DEXA/TBS scans) use bone turnover marker blood tests (CTX & P1NP) & 24 hour urine tests for sodium & calcium to monitor response to treatment. The endocrinologist advised that I likely would need a drug holiday after my 3rd yearly zoledronic acid infusion to reduce the risks of things like AFF & ONJ. Everything that has happened the past 4 years with my bones has felt terrifying at times - but after the 5 fragility fractures, I was more terrified of fracturing again than of the treatments that once terrified me. We each are individuals with unique health histories and fracture risks so we do have to weigh risks/benefits carefully and thoughtfully. If you possibly can, seek out a provider/facility that offers DEXA scans with TBS, and have your scans done at the same facility on the same machine each time. The TBS scores can give you important information and help guide treatment decisions. I wish you the best!

GoldPhoenix profile image
GoldPhoenix in reply to

Thank you so much for sharing your story. I really appreciate it. I have been trying to find a location that does TBS scores. Not having much luck and its confusing. Some say they have it and then when I try to explore further, they only talk about DEXA scans. With the severe muscle and joint pain post zoledronic acid infusion, did it respond to tylenol? How bad was it and was it tolerable? I have heard horror stories that people end up in the hospital afterward.

in reply toGoldPhoenix

Not sure what state you are located in, but if you go to the website: medimapsgroup.com - click on upper right corner where it says “Find Centers with TBS Osteo.” Then simply fill in your information on the form and they will email you a list of facilities in your state that have TBS software on their DEXA scanners. (Some facilities may be VA medical centers or military hospitals but the list also includes academic centers, clinics, providers, etc. that offer TBS as part of their DEXAs.) If you live near a state border, you might want to complete the form for any other states nearby/driving distance.

The fever from the zoledronic acid infusion did respond to Tylenol - the pain somewhat but not completely (I do have severe osteoporosis so that may have been a factor). Even with Tylenol, I hardly could bear to walk for about 12 hours - I spent that time in bed. I already keep an anti-nausea med on hand for prn use but only had to take 2 doses and then no more nausea. The fractures I had in 2019 were extremely painful for quite some time so the amount of time I had the pain from the infusion was quite bearable in comparison. I read some of the same horror stories you have read likely. I would just say to be prepared (for instance, try to get the infusion on a Friday if you have the weekend off, have Tylenol ready, stay hydrated because that is important for your kidney function, have easy to eat things on hand, and set up your resting/sleeping area with the things you want/need nearby so that IF you feel lousy for a bit, you don’t have to move around more than necessary for a day or so.) My side effects didn’t hit me until the 24 hour point after the infusion but they came on rather suddenly. I actually was out driving doing errands and just suddenly felt really ill. Now that I have been through this, I know how to prepare for the next time.

Hope you are able to find a TBS facility soon! Keep us posted!🤗 Also, did you research Evenity? Generally, the anabolic medications work best if used before bisphosphonates, as the bisphosphonates remain in the bone for a long time and suppress both bone resorption and formation. Evenity is the only osteo med that suppresses resorption but allows formation to continue for up to 12 months (it decouples the resorption/formation remodeling process somewhat). I will note that the warnings on the prescribing information on Evenity also concerned me, but I had no issues whatsoever. I did have a full cardiac workup before beginning Evenity as I have significant family history of CVD and had not had a prior cardiac workup.

GoldPhoenix profile image
GoldPhoenix in reply to

Thanks for the info! Evenity has been mentioned and actually was suggested by the first doctor I went to about osteoporosis. My second doctor told me that you can use Evenity only once, so she wasn't recommending that be my first medication of choice. She wants me to go through Z. acid infusions for 3 years first. If you don't mind me asking, what anti-nausea med did you use? Since your infusion, has there been any problems since? Have you had improvement in your scores?

in reply toGoldPhoenix

Hi! On the Evenity - I wish I had used it instead of Tymlos but it was JUST on the market. It was so new that I didn't feel comfortable with using it yet. On 2 years of Tymlos, one of my pelvic fragility fractures never healed - it is a permanent non union with lots of arthritic changes in there now. Evenity likely would have given me the best chance of healing completely as it holds down resorption while still allowing new bone to form. Every provider has their own thoughts on treatment-but you always can get a 2nd (or 3rd or 4th opinion). Those are *your* bones. At this time, Evenity only can be used once. My endocrinologist at the academic center (and another endocrinologist I consulted prior) both said at some point people may be able to use it again - that isn't a given yet. It is limited to 12 months of therapy at this time as it loses its efficacy by that point. I really am hoping that after 3 annual zoledronic infusions, and a drug holiday (of undetermined length as the bisphosphonates stay in the bone for quite some time and it takes the bone time to "wake up" and start remodeling again) that I might be able to use Evenity again. But that is a hope and no guarantee. The doctor did mention down the road it might be a possibility-they just don't know yet.

I have Phenergan on hand prescribed by my primary. I have a very temperamental GI tract & if I begin getting nauseous & go into throwing up, I cannot stop the cycle and end up having to go to ER. So I keep a very small supply on hand to manage if I get a GI virus, etc. so that I don't get dehydrated quickly. I also keep Dramamine on hand for trips so if we take a boat ride I won't get seasick. I know people who take Zofran also. If you go the zoledronic infusion route, you might ask the provider for a 2 day supply of an antiemetic/antinausea med - and fill it before getting the infusion.

I have had no issues since the initial side effects right after the infusion. My doc is very conservative in her protocol to help protect kidneys. She advised to hydrate well before & after the infusion, and she ordered 250 ml of NS infused both before and after med was infused and ordered the med infused over 30 min (15 min is the minimum safe for kidneys). So I was grateful for the detailed protocol to help protect kidneys. Also, she ordered a CMP blood test to check renal function & calcium a week before infusion & 2 weeks following. That also made me feel safer as I knew I was being monitored well.

It isn't time for my scans yet - that will be this summer.

GoldPhoenix profile image
GoldPhoenix in reply to

Thank you for this information. It is very helpful. I really appreciate you taking the time to respond in such a thoughtful way. There is so much for me to learn about this condition before I can make an informed decision about how to treat it.

HeronNS profile image
HeronNS

Sorry I'm so late to seeing this post (blame Christmas). Here's a site which outlines the possible "secondary causes of osteoporosis", tests for which should be run before starting any medication. As indicated in this thread, parathyroid problems, for example, need to be corrected or no treatment will be effective, so it's good to eliminate any such problem in advance of taking drugs. You might also get some ideas from my story, not that my situation is the same as yours, but you may get some ideas about how you can help yourself, whether or not you also take a medication. Good Luck! 🍀

healthunlocked.com/pmrgcauk...

osteoporosis.ca/medical-con...

Raleigh59 profile image
Raleigh59

I too delayed the dexa bc of false concern about radiation but the doctors never told me its supposedly hardly none at all .

Now my OP is quite bad .

I know they say strontium citrate skews results but maybe it skews it because it actually has strengthened and improved the bone density. Strontium citrate is not strontium Renalate and for some people the strontium doesn’t affect their dexa at all So the fact that it doesn’t always skew results maybe it depends on how much it has helped strengthen the bone density or not.

I personally am such a lightweight I believe either increase K2 and or strontium citrate will strengthen my bone density and the best option for me along with other supplements and exercise .

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