Dr sugggesting Prolia (Im 57, postmenopause 12 yrs)

Posted by kris1130 @kris1130, Sep 15 3:29pm

I have an appt (Oct) with a Rheumatoid Dr who specializes also in Osteoporosis .
The Osteoporosis Center I just went to, recommended me to go on Prolia. She told me I should do any HRT (if Oct Dr would suggest that) being on Prolia.
Is anyone in my age range in the same boat?
When reading the groups discussion on medications /side effects they cause, including Prolia, it's a bit scary. I almost feel I should just take the risk with no meds and be careful not to get a fracture until I'm little older.
I have never broken a bone or fractured one. I just think what isn't broke, don't fix.
Any suggestions where I should go from here or what Dr I should go with IF I decide to start taking medications.
My heart aches reading all the side effects, damage some have experienced. We put our confidence in these Dr's to help us and at times I feel the only answer they give is "THIS MEDICATION WILL HELP".
thank you in advance.

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

Hi @kris1130, I know getting an osteoporosis diagnosis at 57 can feel overwhelming and starting Prolia would be a significant decision. I’d want to understand the ‘why’ behind your doctor’s proposal, mainly because:
- Prolia comes with a rebound risk if it’s ever stopped, so it’s a long-term commitment
- If bone turnover (via blood test CTX and P1NP) is already very low, Prolia might not be the best first option
- There are several choices in osteoporosis treatment, and sequencing matters - a lot of experts actually prefer starting with an anabolic (bone-building) drug first, then following with an antiresorptive like bisphosphonate

If you don’t mind sharing, what are your DEXA results (including TBS) and or your FRAX score? Also, have secondary cause(s) for osteoporosis been checked (certain disease states, certain medication usage, calcium and VitD level etc.)?

For what it’s worth, I was diagnosed at 59, used Forteo first then transitioned to HRT, and went from osteoporosis to osteopenia. So there are definitely different ways forward. You’re not alone in figuring this out.

REPLY

kris1130,
I'd would like to muse a little over not fixing what isn't broken.
Our most vulnerable bones are composed of tiny bones called trabecular (meaning little beam in latin) . They form a meshwork that supports the shape of each vertebra. This meshwork is encased in a less porous "cortical" bone.
You can break a lot of these little beams without losing the structure of the vertebra. The vertebra and the femur are sites of this type of bone where dexa images reveal the loss.
You'll never feel the break in spicula until the vertebra compresses. So we have the "silent" collection of tiny breaks that suddenly results in compression fracture.
There are only two medications that can produce the collagen scaffold to rebuild the broken spicula. Forteo and Tymlos.


The rheumatoid osteoporosis specialist is a very good start. Osteoporosis is primarily an endocrine disorder, so you could see an endocrine osteoporosis specialist. It is important that your physician know and understands the dangers involved with these medications. Connect is a great resource.
The choice of medication or no medication is a serious choice. Using all the "natural" remedies doesn't depend upon the medication choice.
I'm on my third year of Forteo.

REPLY
Profile picture for mayblin @mayblin

Hi @kris1130, I know getting an osteoporosis diagnosis at 57 can feel overwhelming and starting Prolia would be a significant decision. I’d want to understand the ‘why’ behind your doctor’s proposal, mainly because:
- Prolia comes with a rebound risk if it’s ever stopped, so it’s a long-term commitment
- If bone turnover (via blood test CTX and P1NP) is already very low, Prolia might not be the best first option
- There are several choices in osteoporosis treatment, and sequencing matters - a lot of experts actually prefer starting with an anabolic (bone-building) drug first, then following with an antiresorptive like bisphosphonate

If you don’t mind sharing, what are your DEXA results (including TBS) and or your FRAX score? Also, have secondary cause(s) for osteoporosis been checked (certain disease states, certain medication usage, calcium and VitD level etc.)?

For what it’s worth, I was diagnosed at 59, used Forteo first then transitioned to HRT, and went from osteoporosis to osteopenia. So there are definitely different ways forward. You’re not alone in figuring this out.

Jump to this post

Hello Mayblin,
I'm pasting my Dexa report because I'm not sure on some of your questions. I have had recent blood work done, below results.
Calcium 10.3
vitamin D-25-Hydroxy 74
I am only on 1 prescription and take a handful of supplements for gut, VitD, Omegas, Multi-Vit over 50.

Dexa Scan
COMPARISON: None available.

LUMBAR SPINE: L1-L4
- Bone mineral density (BMD) = 0.878 g/cm2.
- T-score = -2.6
- Change (%) since most recent prior (if available): None available.

FEMUR: NECK MEAN
- Bone mineral density (BMD) = 0.809 g/cm2.
- T-score = -1.6
- Change (%) since most recent prior (if available): None available.

IMPRESSION:
1. WHO Classification: OSTEOPOROSIS. Fracture Risk: HIGH.

FRAX generally not reported for patients with normal or osteoporotic BMD, in
patients younger than age 40 or older than age 90, in non-steroid-treated
patients younger than age 50, or in patients currently undergoing
pharmacotherapy.

TREATMENT RECOMMENDATION:
The Bone Health & Osteoporosis Foundation recommends consideration to initiate
pharmacologic treatment in postmenopausal women and men >= 50 years of age who
have the following:
- OSTEOPOROSIS: T-score < = -2.5 at the femoral neck, total hip, lumbar spine,
33% radius by DXA
- OSTEOPENIA / LOW BONE MASS: T-score between -1.0 and -2.5 at the femoral neck
or total hip by DXA with a 10-year hip fracture risk >= 3% or a 10-year major
osteoporosis-related fracture risk >= 20% (i.e., clinical vertebral, hip,
forearm, or proximal humerus) based on the US-adapted FRAX model.

NOTE: All decisions for treatment should be discussed between the patient and
one of their individual healthcare providers.

============================================================
WHO CLASSIFICATION:
The T-score compares the patient's BMD to the average BMD of a young adult. The
criteria below are from the World Health Organization:
- NORMAL: T-score -1.0 or above
- OSTEOPENIA / LOW BONE MASS: T-score -1.1 to < -2.5
- OSTEOPOROSIS: T-score -2.5 or lower

ISCD International Society for Clinical Densitometry's 2013 consensus
conference:
In Postmenopausal Women and in Men Age 50 and Older:
- T-scores are preferred.
- The WHO densitometric classification is applicable.
In Women prior to menopause and Men less than Age 50:
- Z-scores, not T-scores are preferred. This is particularly important in
children.
- A Z-score of -2.0 or lower is defined as 'below the expected range for age'
and a Z-score above -2.0 is 'within the expected range for age.'
- The WHO diagnostic criteria may be applied in women in the menopausal
transition.
- Osteoporosis cannot be diagnosed in men under age 50 on the basis of BMD
alone.

THANK YOU for any and all information. It's all new to me and I'm pretty good at researching but Osteoporosis is all over the place.

REPLY
Profile picture for gently @gently

kris1130,
I'd would like to muse a little over not fixing what isn't broken.
Our most vulnerable bones are composed of tiny bones called trabecular (meaning little beam in latin) . They form a meshwork that supports the shape of each vertebra. This meshwork is encased in a less porous "cortical" bone.
You can break a lot of these little beams without losing the structure of the vertebra. The vertebra and the femur are sites of this type of bone where dexa images reveal the loss.
You'll never feel the break in spicula until the vertebra compresses. So we have the "silent" collection of tiny breaks that suddenly results in compression fracture.
There are only two medications that can produce the collagen scaffold to rebuild the broken spicula. Forteo and Tymlos.


The rheumatoid osteoporosis specialist is a very good start. Osteoporosis is primarily an endocrine disorder, so you could see an endocrine osteoporosis specialist. It is important that your physician know and understands the dangers involved with these medications. Connect is a great resource.
The choice of medication or no medication is a serious choice. Using all the "natural" remedies doesn't depend upon the medication choice.
I'm on my third year of Forteo.

Jump to this post

Gently,

Thank you for sharing, explaining more in detail how our bones are composed. Also the informative video 🙂
I have tried to get into 2 endocrinologist who specialize in Osteoporosis...neither is accepting new patients. Then I found the Rheumatoid Dr, and osteoporosis is 1 of several specialties. I will be interested to see what she recommends.
I would LOVE to just go with natural things and not add prescription meds that cause multi-issues, outside of "helping" more bone loss.
I love these support groups, the transparency ....which you won't get from Dr's. I know everyone is different and can have a different outcome with medications, lifestyle.
I love walking , hiking. I am small framed, in shape. I have had issues with "abdominal migraines" for over 30 years and took 17 years and 9 Drs to finally get (what I will take) diagnosis.
THANK YOU AGAIN for information and any/all guidance

REPLY

I was on Prolia for 4yrs. Im 58 now. My periods stopped when I was 44. I wish that I had just done the HRT. I ended up needing a tooth pulled. So had to miss 1 injection. 2 days before I had my tooth pulled I fractured 4 vertebrae in my upper back ( T 3,4,6,8) I've had to have 4 vertbroplasty 8 wks ago and am now getting avenity injection. Apparently if you stop the prolia your bones regress rapidly. I know other women who are on it with no issues. Just don't get a tooth pulled

REPLY
Profile picture for kris1130 @kris1130

Hello Mayblin,
I'm pasting my Dexa report because I'm not sure on some of your questions. I have had recent blood work done, below results.
Calcium 10.3
vitamin D-25-Hydroxy 74
I am only on 1 prescription and take a handful of supplements for gut, VitD, Omegas, Multi-Vit over 50.

Dexa Scan
COMPARISON: None available.

LUMBAR SPINE: L1-L4
- Bone mineral density (BMD) = 0.878 g/cm2.
- T-score = -2.6
- Change (%) since most recent prior (if available): None available.

FEMUR: NECK MEAN
- Bone mineral density (BMD) = 0.809 g/cm2.
- T-score = -1.6
- Change (%) since most recent prior (if available): None available.

IMPRESSION:
1. WHO Classification: OSTEOPOROSIS. Fracture Risk: HIGH.

FRAX generally not reported for patients with normal or osteoporotic BMD, in
patients younger than age 40 or older than age 90, in non-steroid-treated
patients younger than age 50, or in patients currently undergoing
pharmacotherapy.

TREATMENT RECOMMENDATION:
The Bone Health & Osteoporosis Foundation recommends consideration to initiate
pharmacologic treatment in postmenopausal women and men >= 50 years of age who
have the following:
- OSTEOPOROSIS: T-score < = -2.5 at the femoral neck, total hip, lumbar spine,
33% radius by DXA
- OSTEOPENIA / LOW BONE MASS: T-score between -1.0 and -2.5 at the femoral neck
or total hip by DXA with a 10-year hip fracture risk >= 3% or a 10-year major
osteoporosis-related fracture risk >= 20% (i.e., clinical vertebral, hip,
forearm, or proximal humerus) based on the US-adapted FRAX model.

NOTE: All decisions for treatment should be discussed between the patient and
one of their individual healthcare providers.

============================================================
WHO CLASSIFICATION:
The T-score compares the patient's BMD to the average BMD of a young adult. The
criteria below are from the World Health Organization:
- NORMAL: T-score -1.0 or above
- OSTEOPENIA / LOW BONE MASS: T-score -1.1 to < -2.5
- OSTEOPOROSIS: T-score -2.5 or lower

ISCD International Society for Clinical Densitometry's 2013 consensus
conference:
In Postmenopausal Women and in Men Age 50 and Older:
- T-scores are preferred.
- The WHO densitometric classification is applicable.
In Women prior to menopause and Men less than Age 50:
- Z-scores, not T-scores are preferred. This is particularly important in
children.
- A Z-score of -2.0 or lower is defined as 'below the expected range for age'
and a Z-score above -2.0 is 'within the expected range for age.'
- The WHO diagnostic criteria may be applied in women in the menopausal
transition.
- Osteoporosis cannot be diagnosed in men under age 50 on the basis of BMD
alone.

THANK YOU for any and all information. It's all new to me and I'm pretty good at researching but Osteoporosis is all over the place.

Jump to this post

First of all, I would say that your Tscores,
compared to most people who NEED to get on osteoporosis medications, are excellent. Your -2.6 Tscore is on the edge of osteopenia. I didn’t see your FRAX score. I would take into account what your FRAX score is before starting medication . I remember seeing somewhere (maybe the NIH) that medication is not required as long as your FRAX rate is below 20%, you have not fractured, and you are in the osteopenia range.

I hope this helps. Educate yourself before starting the meds. If you decide to start taking them, make sure your doctor knows to test your CTX and P1NP (bone turnover markers) before starting the meds, then repeating those tests every 3-4 months to make sure the meds are doing what they are supposed to be doing! If your doctor doesn’t know what I am talking about, look for another one.

Here is the link to calculate your FRAX score;
https://www.fraxplus.org/calculation-tool
It is never too late to start eating better and do more exercises, especially while you decide which path to take. Listen to some podcasts by Margie Bissinger, Dr Doug Lucas and Sarah Mapes about osteoporosis. They have helped me to be more educated and NOT so scared about the diagnosis, especially if you are a healthy person (other than the OP)!!

Also, don’t BEND over to pick up things or touch your toes anymore! Make sure you hip hinge! Watch videos from people I mentioned above on proper lift techniques, how to exercise, etc.

REPLY
Profile picture for kris1130 @kris1130

Gently,

Thank you for sharing, explaining more in detail how our bones are composed. Also the informative video 🙂
I have tried to get into 2 endocrinologist who specialize in Osteoporosis...neither is accepting new patients. Then I found the Rheumatoid Dr, and osteoporosis is 1 of several specialties. I will be interested to see what she recommends.
I would LOVE to just go with natural things and not add prescription meds that cause multi-issues, outside of "helping" more bone loss.
I love these support groups, the transparency ....which you won't get from Dr's. I know everyone is different and can have a different outcome with medications, lifestyle.
I love walking , hiking. I am small framed, in shape. I have had issues with "abdominal migraines" for over 30 years and took 17 years and 9 Drs to finally get (what I will take) diagnosis.
THANK YOU AGAIN for information and any/all guidance

Jump to this post

Not everyone who takes Osteoporosis drugs is going to experience side effects or "multi issues". I have taken alendronate, forteo, evenity and one year of Prolia. I have not had noticeable side effects nor have I fractured. We are all individual in or histories and responses.

REPLY

You mentioned estrogen. Hormone therapy is one way to build bone and it can be used in conjunction with regular bone meds. I just wanted to caution you to check with doctor (perhaps even a consultation with a cardiologist) before taking. If you have any risk factors for cardiovascular disease, estrogen should be used with caution. If you have none, could consider a cardiac CT or a endothelial Caronary ultrasound as screening test.

REPLY
Profile picture for shelldct1 @shelldct1

First of all, I would say that your Tscores,
compared to most people who NEED to get on osteoporosis medications, are excellent. Your -2.6 Tscore is on the edge of osteopenia. I didn’t see your FRAX score. I would take into account what your FRAX score is before starting medication . I remember seeing somewhere (maybe the NIH) that medication is not required as long as your FRAX rate is below 20%, you have not fractured, and you are in the osteopenia range.

I hope this helps. Educate yourself before starting the meds. If you decide to start taking them, make sure your doctor knows to test your CTX and P1NP (bone turnover markers) before starting the meds, then repeating those tests every 3-4 months to make sure the meds are doing what they are supposed to be doing! If your doctor doesn’t know what I am talking about, look for another one.

Here is the link to calculate your FRAX score;
https://www.fraxplus.org/calculation-tool
It is never too late to start eating better and do more exercises, especially while you decide which path to take. Listen to some podcasts by Margie Bissinger, Dr Doug Lucas and Sarah Mapes about osteoporosis. They have helped me to be more educated and NOT so scared about the diagnosis, especially if you are a healthy person (other than the OP)!!

Also, don’t BEND over to pick up things or touch your toes anymore! Make sure you hip hinge! Watch videos from people I mentioned above on proper lift techniques, how to exercise, etc.

Jump to this post

I wasn't sure if FRAX (using another term) was on my Dexa report. This is the only report I received. Truly appreciate your advice, knowledge and feel a little relief I don't need to make an immediate decision. Research more as a whole. Mainly because I haven't broken/fractured any bones and need to prevent one, while I continue my research.
Thank you also for the extra "don't do" I actually stretch standing & sitting legs out -touching my toes. I will no longer be doing that and bending over at waist.
Thanks again. Please continue to send more info/research if you feel it will help me.

REPLY
Profile picture for laura1970 @laura1970

You mentioned estrogen. Hormone therapy is one way to build bone and it can be used in conjunction with regular bone meds. I just wanted to caution you to check with doctor (perhaps even a consultation with a cardiologist) before taking. If you have any risk factors for cardiovascular disease, estrogen should be used with caution. If you have none, could consider a cardiac CT or a endothelial Caronary ultrasound as screening test.

Jump to this post

Thank you Laura1970. In conjunction with my Dexa scan, I had a CT calcium score test down (2nd one I have requested in 2 yrs) due to having elevated cholesterol and Dr wanted me on Statin but both my Calcium scores "0". Dr feels it is familial cholesterol since both parents had it.
I have read somethings about HT and estrogen, in addition to not having estrogen can cause memory/brain issues (which I have had some testing and do have some concerns for early AD. Just taking one thing at a time and figuring out what is best and most least meds, with least further damaging.

REPLY
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