New osteoporosis diagnosis - please advise?

[Bonfire]

For @Begonia and @Bonfire and anyone else dealing with osteoporosis here’s a post I found uplifting and hope you will too.

“
We all need positivity and happiness in our daily lives

I would like to share some affirmations from NOF
thinking that they will help to create that joy daily

Have a beautiful Sunday and WALK TALL and INDEPENDENT for a lifetime

NOF osteoporosis affirmations

•I have osteoporosis, but I know that it’s beatable and treatable.
•I plan to live a long and healthy life. Having strong bones is important in achieving this goal, and I am willing and able to do what it takes.
•I stay focused on my strengths. Knowing that I have strengths motivates me to do my best every day for my health and well being.
•I think positive thoughts about my physical and emotional health.
•I seek out and choose to have friendships with people who support me. Having strong, positive relationships keeps me healthy.
•I exercise regularly. My bones and entire body appreciate my effort. I become stronger and more flexible each day.
•I forgive myself for past unhealthy behaviors and focus on the things I can do now.
•I know that what I do today brings strength to my body and soul.
•I reward myself in healthy ways. One of my favorite activities is to take walks by myself or with a friend several times a week. I can focus on the beauty of nature or on pleasurable conversation while I do something positive for myself.
•My bone health is worth my time and attention.
•I love myself enough to take good care of my health.
•My bones are an essential part of my body. Bones give shape to my body, and they support and protect my internal organs.
•I respect and care for my bones and treat them well.
•I am careful with movements and activities. I care enough about my bones to protect them.
•When I think about myself, I see a vibrant and healthy person.
•I welcome people into my life, and strangers become friends. Osteoporosis does not isolate me or keep me from having relationships with friends and family.
•I approach the future one day at a time, and I remember to appreciate each day as I live it.
•I feel good about my bones and my health. I feel good about life.
•I accept help graciously and positively. Everyone needs a little help from time to time. I am grateful that there are people to help me. And, I help others in turn.
•I make my bones stronger by exercising regularly, remembering to get enough calcium and vitamin D and taking my medicine as directed.
•When I take my medicine, I visualize it strengthening my spine, hips and other bones in my body. I see strong healthy bones.
•I take pleasure in each new day.
•I plan and take part in activities, gatherings and social events that I enjoy.
•I’m happy knowing that I can have strong healthy bones.
•When I look in the mirror, I remember to STAND TALL. I feel good about myself

“

This is inspiring and beautiful @missy. Thank you for sharing and caring! <3

 

[missy]

PT continues. I only have six more sessions left. I feel stronger. Legs and core. Arms not as improved but it’s not for lack of trying. I’m nothing if not persistent. So I continue strength training and balance training and doing core work and when my therapy sessions end I’ll continue doing what I can at home. If I can do it anyone can.


The reason I’m sharing here is to say I think it’s a worthwhile endeavor to do PT and learn how to do the exercises safely. While building bone might be near impossible we can strengthen and build muscle and improve balance and our core strength. All go towards improving our health and hopefully lessening the chances of fractures.

If anyone is interested I’m happy to share my PT program with you.

@Bonfire thank you. I appreciate the positive feedback. I am more than happy to share anything I can to help those dealing with similar challenges. We can do this.

 

[missy]

Lol today’s newest addition. It feels as silly as it looks but hopefully once I master it I’ll feel less silly.

 

[OboeGal]

Lol today’s newest addition. It feels as silly as it looks but hopefully once I master it I’ll feel less silly.

I bet that's great for your core strength!

I have difficulty building upper body strength, too. Lower body and core, no problem. I actually work my upper body more trying to "catch up" to lower body, but it doesn't work. I don't know why.

 

[missy]

I bet that's great for your core strength!

I have difficulty building upper body strength, too. Lower body and core, no problem. I actually work my upper body more trying to "catch up" to lower body, but it doesn't work. I don't know why.

I think many of us share that challenge. Our legs are stronger than our arms. We start out with less muscle in our upper body relative to our lower body so perhaps that’s part of the reason.

I’ve just been reading about vibration therapy. It’s very interesting. I’ll share when I have more info.

 

[missy]

This is a good summary comparing some of the OP meds.

“Clinical effectiveness of denosumab, raloxifene, romosozumab, and teriparatide for the prevention of osteoporotic fragility fractures: A systematic review and network meta-analysis”

Clinical effectiveness of denosumab, raloxifene, romosozumab, and teriparatide for the prevention of osteoporotic fragility fractures: A systematic review and network meta-analysis

To determine the clinical effectiveness of denosumab (DEN), raloxifene (RLX), romosozumab (ROMO) and teriparatide (TPTD), within their licensed (or an…

www.sciencedirect.com

 

[missy]

Absolute risk reduction to compare efficacy of antiosteoporotic treatments in the absence of head-to-head trials - Medicographia

Back to summary |Download this issue Bernard CORTET, MD, PhD Département Universitaire de Rhumatologie Université de Lille 2 Lille, FRANCE Absolute risk reduction to compare efficacy of antiosteoporotic treatments in the absence of head-to-head trials by B. Cortet ,France The last 15 years have...

www.medicographia.com

 

[Bonfire]

Thanks for sharing @missy!!

 

[missy]

Thanks for sharing @missy!!

Thanks @Bonfire. I just started Evista today. It doesn't help hips etc but might be helpful for the spine. Not a big help but even if it is a small boost I would be happy. For now I chose Evista due to the risk profile of the med (blood clots if one is prone and hot flashes) and my hope it will help maintain the spine. But time will tell. I cannot take biphosphonates unfortunately so that leaves a lot of meds out. Forteo is the best med for building bone but since one can only take that for a max of 2 years it is reserved for more advanced osteoporosis. Another that builds bone is Evenity and my rheumatologist wanted to start with that one but that risk profile isn't so great IMO.

Hope you are doing well!

 

[Bonfire]

Thanks @Bonfire. I just started Evista today. It doesn't help hips etc but might be helpful for the spine. Not a big help but even if it is a small boost I would be happy. For now I chose Evista due to the risk profile of the med (blood clots if one is prone and hot flashes) and my hope it will help maintain the spine. But time will tell. I cannot take biphosphonates unfortunately so that leaves a lot of meds out. Forteo is the best med for building bone but since one can only take that for a max of 2 years it is reserved for more advanced osteoporosis. Another that builds bone is Evenity and my rheumatologist wanted to start with that one but that risk profile isn't so great IMO.

Hope you are doing well!

I took Forteo injections 6-7 years ago for 9 months. It helped build bone but I also became hypercalcemic. I was also worried as it had a black box warning as a carcinogen. I also looked into Evenity and my Endo seemed excited by it, but I’m not willing to take on those heart related risks. I hope you have good results with Evista missy.

 

[missy]

I took Forteo injections 6-7 years ago for 9 months. It helped build bone but I also became hypercalcemic. I was also worried as it had a black box warning as a carcinogen. I also looked into Evenity and my Endo seemed excited by it, but I’m not willing to take on those heart related risks. I hope you have good results with Evista missy.

Thank you @Bonfire. It's certainly a difficult decision as most (all?) of the OP meds have some not great side effects. It comes down to choosing the lesser of the evils for the individual. I read that hypercalcemia could be an issue with Forteo and I might not even be a candidate as my Alk Phosphatase is already elevated and that is a contraindication for that med. It does seem like a really good med if one can tolerate it. I am sorry you developed hypercalcemia on it and I hope you experienced a boost in your bone density for the 9 months you were able to take it.

 

[missy]

FYI:

Ten Years of Very Infrequent Zoledronate Therapy in Older Women: An Open-Label Extension of a Randomized Trial

AbstractContext. Intravenous zoledronate prevents bone loss and reduces fracture risk in older adults but the optimal dosing strategy required to achieve each o

academic.oup.com

 

[missy]

I know of at least one interested person so am sharing here. I think there are probably a few more who this might be of interest to as well.

Reclast horror story. Yes this was back in 2011. Just to remind us there are risks with these meds. I was considering Reclast but after reading of this woman's experience, nope.

Member Interview on Reclast and FDA Testimony

Jerri Iehl takes us through her treatment and the medical issues that occurred while she was treated for osteoporosis.

www.healthcentral.com

And an updated list of OP meds.

What Are Your Osteoporosis Medication Options?

From antiresorptives like biphosphonates to hormone replacement therapy, you've got options when it comes to osteoporosis medication.

www.healthcentral.com

 

[missy]

I took Forteo injections 6-7 years ago for 9 months. It helped build bone but I also became hypercalcemic. I was also worried as it had a black box warning as a carcinogen. I also looked into Evenity and my Endo seemed excited by it, but I’m not willing to take on those heart related risks. I hope you have good results with Evista missy.

@Bonfire I was taking Evista with no side effects (that I knew of) however, for some reason, my bone markers kept rising instead of falling. Meaning my bone was/is breaking down at an even greater rate. Makes no sense. So to that end my gynecologist and endocrinologist decided I should try BHRT and I agreed. So for about a week or so I have been taking hormone replacement and we shall see. I am almost past the useful window and not sure I will get any benefit and am well aware of the many risks. One day at a time. I will get a mammogram and ultrasound in the spring instead of my usual January appt to give the hormones time to work and see if I experience any g-d forbid side effects.

If this doesn't work, or I cannot continue with it due to side effects I guess I will consider Evenity as Forteo and Tymlos aren't options for me due to my high Alk Phosphatase. Those treatments increase the Alk Phosph further and for that reason are contraindicated in people who already have elevated Alk Phosph.

Sharing for those who are going through this and hoping my experience and info shared might be helpful.

 

[Bonfire]

That’s interesting about Evista effecting you that way.
I know you do your research @missy, and it’s hard to navigate this complicated issue. Throw in some other physical elements and it gets even more complicated.

Many doctors will recommend HRT or BHRT to help reverse osteoporosis. It’s such a slippery slope. Many medications are a rob Peter to pay Paul scenario.
It sounds as though you are proceeding with caution.
It’s wise to keep in mind ALL Estrogen response in your breasts is accumulative over your lifetime. That said, women who never took hormones (contraceptives, HRT, etc) can still develop Estrogen driven breast cancer as well as those whose history includes it. You are wise to keep a close check on your breast imaging. May I suggest you also get an MRI at some point along the way. Be aware of a less common and very sneaky and difficult to detect breast cancer, invasive Lobular carcinoma (ILC). It’s being diagnosed more and more frequently. It has a different histology and growth pattern that makes it difficult to feel and hard to see on mammogram until it gets larger. It’s overwhelmingly Estrogen sensitive and driven.

I had my last Dexa scan in October and my T scores have greatly improved on Prolia. Yay!

Good luck in this journey missy, but at least you are traveling with your eyes open.

 

[missy]

Update for those who are following.
I started bhrt December 2020 but didn’t really get to optimal levels til a few months ago. Needless to say I was happily surprised my dxa and tbs improved significantly. My bone specialist (leading bone specialist in the country and perhaps world) made me repeat it a month apart as he couldn’t believe the improvement just from bio identical sex hormones.

Of course I also did a number of other things.
Gained weight to get my BMI to a healthier range.
Added 1.6 grams of protein per kg of body weight.
Half my calcium rda from supplementation and the other half from food.
MK4 45. Divided into three daily doses.
MK7.
Weight training every other day and weight bearing exercises daily.

Other supplementation where I lacking.

Getting my free t3 to a healthier range. Aka less hypothyroid.


Hope that helps and hope everyone is doing well and remaining healthy.
XO.

 

[Daisys and Diamonds]

Update for those who are following.
I started bhrt December 2020 but didn’t really get to optimal levels til a few months ago. Needless to say I was happily surprised my dxa and tbs improved significantly. My bone specialist (leading bone specialist in the country and perhaps world) made me repeat it a month apart as he couldn’t believe the improvement just from bio identical sex hormones.

Of course I also did a number of other things.
Gained weight to get my BMI to a healthier range.
Added 1.6 grams of protein per kg of body weight.
Half my calcium rda from supplementation and the other half from food.
MK4 45. Divided into three daily doses.
MK7.
Weight training every other day and weight bearing exercises daily.

Other supplementation where I lacking.

Getting my free t3 to a healthier range. Aka less hypothyroid.


Hope that helps and hope everyone is doing well and remaining healthy.
XO.

I havn't been following this thread of late but this sounds very encouraging Missy, well done

Best wishes to everyone