New osteoporosis diagnosis - please advise?

[Bonfire]

Thanks again missy for sharing your information. Unfortunately none of us has a crystal ball to look into the future to see exactly what the trade offs are for us individually. Some of these risks are not worth taking. I will strongly warn against HRT, very slippery slope! In the meantime missy, you are doing all the right things.

 

[missy]

Hi Missy, I’m sorry to ask this again but does anyone have Rocco’s for brand and dose of cal mag, and K2. I’m looking for “pure” good quality brands but am overwhelmed. TIA. OP sorry to threadjack.

Hi @LightBright, I am not an expert but I am taking this. For now.

I use Pure Encapsulations D3. I take between 2000-3000 a day.

https://www.emersonecologics.com/products/detail/16114/item/VI208

For K2 (MK 4). Still waiting for this supplement and not sure of my dose yet.

https://www.emersonecologics.com/products/detail/15313/item/P1092

For K2 (MK7) I take 2 (90) pills a day

https://www.emersonecologics.com/products/detail/16203/item/VKM7

For Calcium. Taking 400-500 mg twice a day.

https://www.emersonecologics.com/products/detail/2423/item/CAL77

For Magnesium. I take 4 (120 mg) pills a day.

https://www.emersonecologics.com/products/detail/8868/item/MAG48

HTH.

 

[missy]

Thanks again missy for sharing your information. Unfortunately none of us has a crystal ball to look into the future to see exactly what the trade offs are for us individually. Some of these risks are not worth taking. I will strongly warn against HRT, very slippery slope! In the meantime missy, you are doing all the right things.

Thank you @Begonia, yes my mom is saying the same thing re HRT because of our family risk. I just am at a loss as to what med because they all have possible scary side effects. I am very glad you have found a good treatment for you and it gives me hope.

 

[LightBright]

Thank you Missy, you are so kind.

 

[missy]

Thank you Missy, you are so kind.

@LightBright it is my pleasure and please do not ever hesitate to ask anything. It is never considered a thread jack. I truly want to help anyone I can and though I am (so) not an expert and at the beginning of my journey there really is strength in numbers. We are all here for each other as women and bling sisters. (((Hugs))).

 

[missy]

I am researching safe exercises now.

It is critical not to bend our spine so we can prevent vertebral fractures which can happen even if just coughing or sneezing if our bones are frail enough. So obviously we can just do the best we can do but to that end strengthening our muscles and improving our balance through exercise can be key in improving our fracture risk and maintaining good health.

Safe bending:



Pilates exercises that are safe for those with osteoporosis.

National Osteoporosis Foundation

nof.peachnewmedia.com

What This Biomechanics Professor Wishes People Knew About the Real Causes of Low Back Pain

50% of this spine biomechanics professor's patients were injured by personal trainers. You need to debunk these 7 shocking myths if you want to keep clients safe.

www.theptdc.com

 

[missy]

Osteoporosis and Exercise – Activities, Guidelines, Research, and Insi

Many thanks to guest author Sherri Betz of TheraPilates® Physical Therapy Clinic in Santa Cruz, CA for letting me share this great information for Osteoporosis and exercise on my Centerworks.com/blog. Sherri recently published this article in her newsletter, and then added extra insights once...

www.centerworks.com

 

[Tekate]

@missy I am sorry about this diagnosis. I think you are researching and absolutely doing the best for yourself. I think since you have a medical background you are very helpful in breaking down what to read and in research. I'm sure for a bone scan, haven't had one since I was 50 17 years ago.. I'm nervous. They used to say that if you had osteoarthritis you never got osteoporosis, but that is not true, I hope I pass, I did lose some height as I said in NIRDs, my sister had such bone loss it was truly horrible to see, she did have a very high calcium count as you know (I've told you at least 5X I think).. I think your physicians would look into parathyroid disease so I don't think you are losing bone because of high PTH, I've not had my PTH checked but I should, although my CA is in normal range and my sister's was skyskysky high. Take care and I will try to get on her more to keep an eye on what is going on with you and everyone else. Thinking of you. xo

 

[missy]

@missy I am sorry about this diagnosis. I think you are researching and absolutely doing the best for yourself. I think since you have a medical background you are very helpful in breaking down what to read and in research. I'm sure for a bone scan, haven't had one since I was 50 17 years ago.. I'm nervous. They used to say that if you had osteoarthritis you never got osteoporosis, but that is not true, I hope I pass, I did lose some height as I said in NIRDs, my sister had such bone loss it was truly horrible to see, she did have a very high calcium count as you know (I've told you at least 5X I think).. I think your physicians would look into parathyroid disease so I don't think you are losing bone because of high PTH, I've not had my PTH checked but I should, although my CA is in normal range and my sister's was skyskysky high. Take care and I will try to get on her more to keep an eye on what is going on with you and everyone else. Thinking of you. xo

@Tekate thank you for sharing. I am so sorry about your sister. My rheumatologist is looking into PTH disease because in February it was elevated. But it hadn't been elevated ever before so it was a one time anomaly but we are checking into that and to that end he has me on Calcium til my next appointment with him. His theory is if I have PTH disease the levels will go down with Calcium supplementation. Or something like that because honestly I forget the details. So much on my mind right now.

I have osteoarthritis too so I wish that old adage was true. Oh well. Please do get your bone density checked since you are due. Knowledge is power even if the OP meds aren't great they have helped some amazing PSers retain bone health and that inspires me. Please get your DEXA and fingers crossed it is A OK.

I have some more links to share and will gather them later and share here. Hope everyone who is taking OP meds or other steps to help their OP is doing well.

 

[missy]

Important (IMO) links fyi:

If you have osteoporosis of the spine you should be mindful of keeping your spine straight and trying not to curve/bend it. I discussed this in an earlier post. Hip hinging. And golfers pick up is another way to pick things up without bending one's spine. This link is extremely informative and illustrates how you can safely bend. HTH.

https://melioguide.com/wp-content/uploads/2016/06/acitivities-of-daily-living.pdf

 

[missy]

Some helpful core exercises to help strengthen your core and improve your balance.

Core Strengthening Archives

Everything you need to know about core strengthening and core exercises.

melioguide.com

 

[missy]

One more link on safely doing daily activities.

Videos On How To Safely Do Everyday Activities | Osteoporosis Canada

osteoporosis.ca

 

[missy]

Lastly re the hip hinge.

 

[Begonia]

Lastly re the hip hinge.

Damn! Can’t do those cuz of my herniations.

Squats keeping your spine neutral (not curving or twisting) is another option I use daily cuz of the herniations. Hopefully those are safe, cuz I’m out of options otherwise.

 

[missy]

Damn! Can’t do those cuz of my herniations.

Squats keeping your spine neutral (not curving or twisting) is another option I use daily cuz of the herniations. Hopefully those are safe, cuz I’m out of options otherwise.

Yes squats are safe and in fact I do squats to get me down low when hip hinge isn't sufficient. But I have to work on my leg strength for sure. And my balance! This OP stuff isn't easy but lucky we are tough gals right?

 

[Begonia]

Yes squats are safe and in fact I do squats to get me down low when hip hinge isn't sufficient. But I have to work on my leg strength for sure. And my balance! This OP stuff isn't easy but lucky we are tough gals right?

Going upstairs to change into my TG panties and then (joy of joys), off to my mammogram.

 

[Elizabeth35]

Missy--thanks for all your research. Sadly, it is making me think that most MD's are not well-informed about osteoporosis. Who should be the expert--PCP, gene, etc.? Who is truly an osteoporosis expert?
I ordered MK-4 vitamins based on some reading from your research, and messaged my gynecologist (who is treating my osteoporosis) to get a thumbs up based on being on hypertension and cholesterol meds.
Here is the response I got (granted it is from the nurse who screens the emails, and not my gynecologist):

"MK-4 is not a vitamin we have heard a lot about so we are a poor resource. You can always check wth your local pharmacist who has access to a lot more of the medication interventions than we have, and will be able to given you some answers regarding your actual medications and MK-4. Another good resource would be your primary care physcian. Sorry we cannot be more helpful."

So basically shoving me off to pharmacist for contraindications and my PCP. Ugh. So they are basically saying they are not only ill-informed, but pawning responsibility/liability off to PCP.
All of which makes me realize I have to be driving this ship regarding medication choices.

 

[missy]

Missy--thanks for all your research. Sadly, it is making me think that most MD's are not well-informed about osteoporosis. Who should be the expert--PCP, gene, etc.? Who is truly an osteoporosis expert?
I ordered MK-4 vitamins based on some reading from your research, and messaged my gynecologist (who is treating my osteoporosis) to get a thumbs up based on being on hypertension and cholesterol meds.
Here is the response I got (granted it is from the nurse who screens the emails, and not my gynecologist):

"MK-4 is not a vitamin we have heard a lot about so we are a poor resource. You can always check wth your local pharmacist who has access to a lot more of the medication interventions than we have, and will be able to given you some answers regarding your actual medications and MK-4. Another good resource would be your primary care physcian. Sorry we cannot be more helpful."

So basically shoving me off to pharmacist for contraindications and my PCP. Ugh. So they are basically saying they are not only ill-informed, but pawning responsibility/liability off to PCP.
All of which makes me realize I have to be driving this ship regarding medication choices.

You are right. You do have to be the person driving your healthcare. You are your own greatest advocate and unfortunately in many cases we are the greatest source of info regarding certain conditions like OP and nutrition.

The physicians (for the most part) are poorly informed re osteoporosis re meds (they know what the pharmaceutical reps tell them and we know the pharmaceutical reps motivation) and diet. Sad but true. Having said that we need a physician on our team and if you think your GYN is doing a good job that works. Usually a rheumatologist or endocrinologist is the specialist who is most comfortable treating OP depending on the specific doctor however.

Right now I am under my rheumatologist's care but seeing my endocrinologist at the end of April and will see what his comfort level is re treating OP. Since I already see my endocrinologist every few months I would prefer having him treat me vs going to yet another specialist but I will see who is most capable of treating my OP and go from there.

As for supplements most doctors are not knowledgeable at all so it doesn't surprise me your doctor has no knowledge of MK4 and truthfully I wouldn't expect your pharmacist to know much more about it but you can ask. A functional medicine practitioner is your best bet if you want a healthcare physician guiding you re supplements.

Did I share the MK4 data with you? I am quite disorganized as there is so much research I have been doing and I have tabs open everywhere lol so let me know if you need me to search for the MK 4 info again. I think I linked the scientific article here concerning MK4 helping bone over any other supplement. It can help for sure but the question is will it help us as with everything individuals respond differently.

However MK4, as with most supplements, when taken in isolation there is something lacking and we must combine it with good nutrition. Including enough protein as bone is protein so we have to have calcium, protein, MK4 and vitamin D plus other nutritional ingredients. Boron, Magnesium, phosphorous, etc. That is why getting nutrition from whole foods is important because in isolation it is artificial. However we make up for what we might not get in sufficient quantity with vitamin supplementation as it would be hard to get enough MK4 from diet. Especially for someone like me who doesn't eat meat.

HTH.

 

[missy]

Going upstairs to change into my TG panties and then (joy of joys), off to my mammogram.

How did it go @Begonia? Hope your mammogram was uneventful and that is one thing you have crossed off your to do list for this year. How are you feeling?

 

[missy]

I cannot remember if I shared this here but it is helpful re safe ways to do daily activities and keep our spine in a neutral (least pressure) position...I am definitely having trouble doing all activities with a neutral spine but it's a work in progress. And truth be told I have to bend down and lift the cats sometimes and clean the litter boxes etc and I almost think it is impossible to do those activities in a neutral position but this guide is helpful IMO even if one cannot do everything perfectly. Every little bit helps.

https://melioguide.com/wp-content/uploads/2016/06/acitivities-of-daily-living.pdf

My biggest challenge is sleeping in a neutral spine position. And right now sleep is critical for me so I am sleeping in whatever position I can. I am going to try a big body pillow and see if that helps. Just have to find one that looks good.

 

[Begonia]

How did it go @Begonia? Hope your mammogram was uneventful and that is one thing you have crossed off your to do list for this year. How are you feeling?

Hi missy!

The mammo went fine. I had some anomalies 2 years ago and was supposed to get another last year, and well long story, but the mammo last year didn't happen, ergo my nervousness. Waiting on the report now...

The gabapentin is making me feel like crap, and my recently done root canal is aching. I think it's the gaba cuz I went off it, and the aching has stopped. Headache, woozy, groggy and hello - insomnia!
Worse than I normally have.
Goodbye gaba (for now at least). It was important I try it.

How are things with you today??

 

[missy]

Hi missy!

The mammo went fine. I had some anomalies 2 years ago and was supposed to get another last year, and well long story, but the mammo last year didn't happen, ergo my nervousness. Waiting on the report now...

The gabapentin is making me feel like crap, and my recently done root canal is aching. I think it's the gaba cuz I went off it, and the aching has stopped. Headache, woozy, groggy and hello - insomnia!
Worse than I normally have.
Goodbye gaba (for now at least). It was important I try it.

How are things with you today??

I am glad the mammogram went well and hoping the report is all good news.
We are doing OK, thanks for asking @Begonia.

So I tried CBD oil last night. We bought it from a local neighborhood CBD shop and it was pricey but it is supposed to be good CBD oil. Winterized (which means not heated to the point of killing the active ingredient) and good quality. I got the full spectrum based on the salesperson's rec and it is an oil. No added stuff like in other delivery forms such as gummy bears etc.

I took it before bed and cannot definitively say it helped with sleep yet but while I did wake 3 times at 11Pm/3AM and 4:30AM I went back to sleep quickly which doesn't happen often and slept until 6:30 AM which is super late for me ! But of course one night does not make any accurate conclusions so while this all positive I cannot draw any conclusions about it and will keep you posted. It cost $180 for a bottle which lasts 30 days so it is pricey but if it works I will be thrilled.
Not groggy or anything either.

I am sorry the Gabapentin didn't work out for you and I will keep you posted re my experience with this CBD oil.

 

[Begonia]

I am glad the mammogram went well and hoping the report is all good news.
We are doing OK, thanks for asking @Begonia.

So I tried CBD oil last night. We bought it from a local neighborhood CBD shop and it was pricey but it is supposed to be good CBD oil. Winterized (which means not heated to the point of killing the active ingredient) and good quality. I got the full spectrum based on the salesperson's rec and it is an oil. No added stuff like in other delivery forms such as gummy bears etc.

I took it before bed and cannot definitively say it helped with sleep yet but while I did wake 3 times at 11Pm/3AM and 4:30AM I went back to sleep quickly which doesn't happen often and slept until 6:30 AM which is super late for me ! But of course one night does not make any accurate conclusions so while this all positive I cannot draw any conclusions about it and will keep you posted. It cost $180 for a bottle which lasts 30 days so it is pricey but if it works I will be thrilled.
Not groggy or anything either.

I am sorry the Gabapentin didn't work out for you and I will keep you posted re my experience with this CBD oil.

Cautiously optimistic then for CBD for you @missy. Maybe they already mentioned this, but stay at the same dose for quite a few days and see how you acclimate to it? If you have to increase/decrease, do it over several days. Apparently (like many drugs) it takes a few days for effects to be felt. So if you increase, 1 drop at a time and stay at 1 drop increase for a while. Forgive me if you are aware of all this!

 

[missy]

Cautiously optimistic then for CBD for you @missy. Maybe they already mentioned this, but stay at the same dose for quite a few days and see how you acclimate to it? If you have to increase/decrease, do it over several days. Apparently (like many drugs) it takes a few days for effects to be felt. So if you increase, 1 drop at a time and stay at 1 drop increase for a while. Forgive me if you are aware of all this!

I am not aware of that and thank you for letting me know @Begonia! The guy told me to take .75ml of a dropper right before bed. That is approximately (I think) 66 mg of CBD. This is all new to me. He didn't tell me to increase my dose. Last night I took .75ml and will do the same for a few days and see what happens. I am on a few meds too and of course to cover their you know what it says discuss with your physician before taking if you are on meds. However, my experience is, and yours may or may not be similar, my doctors have no clue about CBD. So asking them is not helpful.

 

[Begonia]

I am not aware of that and thank you for letting me know @Begonia! The guy told me to take .75ml of a dropper right before bed. That is approximately (I think) 66 mg of CBD. This is all new to me. He didn't tell me to increase my dose. Last night I took .75ml and will do the same for a few days and see what happens. I am on a few meds too and of course to cover their you know what it says discuss with your physician before taking if you are on meds. However, my experience is, and yours may or may not be similar, my doctors have no clue about CBD. So asking them is not helpful.

Docs have no clue! I agree. I didn't know the above either. If you find it's too much/little, minor adjustments, hold for a few days. Slow and steady.

I wasn't able to take CBD, or at least under the conditions we now have? Meaning current knowledge, but it has it's uses. Good thoughts your way for success.

 

[missy]

Hello all, just a quick update.

I had a telemedicine call last week with the head of Rheumatology at a major NYC hospital and his speciality is OP. He was very knowledgeable and it was just an initial visit and of course no blood work or other tests could be done via the internet. But he wants me to do a 24 hour urine test and get blood work before I see him in June if they are seeing patients by then.

He plans on doing a lumbar specific bone density test on me at that in person visit. He agreed with me that Evista (that was the med I decided would be a good fit for me for now) was a good choice and he said if I need a med he would be good with prescribing that one. So I guess I have to be patient and see when it is safe to go to the lab and get the necessary tests as he wants those before he sees me in person.

Covid 19 is putting all our lives on hold for the time being but prioritizing is critical and this just has to wait.

Hope everyone is doing well and remaining healthy.

 

[missy]

FYI. We need protein with our calcium to build bone as well as weight bearing exercise. Turns out many of us have muscle mass lost with bone loss. They’re related.
It’s a good article imo.

The Paradox of Osteoporosis Irreversibility | Robert P. Heaney, M.D.

 

[missy]

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

“

 

[Begonia]

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

“

Thanks for sharing that @missy! It helps, a lot. I've been feeling so disappointed in my body, and that isn't good. I've always eaten very well and exercised, no smoking, drinking, drugs, so when the diagnosis came I thought what??? The diagnosis scares me quite a bit too.

I'm on day 7 of an 8 day work cycle and have to get ready for work, but can we discuss your treatment choice in a few days? I tried Fosamax and was unable to continue more than 3 doses. It made me so unwell, so I'm not taking anything currently. My doctor suggested waiting as all of the options he felt were problematic. I'd love to get a second opinion on that of course.

 

[missy]

Thanks for sharing that @missy! It helps, a lot. I've been feeling so disappointed in my body, and that isn't good. I've always eaten very well and exercised, no smoking, drinking, drugs, so when the diagnosis came I thought what??? The diagnosis scares me quite a bit too.

I'm on day 7 of an 8 day work cycle and have to get ready for work, but can we discuss your treatment choice in a few days? I tried Fosamax and was unable to continue more than 3 doses. It made me so unwell, so I'm not taking anything currently. My doctor suggested waiting as all of the options he felt were problematic. I'd love to get a second opinion on that of course.

Yes, definitely. Whenever you’re ready I’m happy to discuss the options. I actually have a telemedicine call this Tuesday with my rheumatologist to do just that.

(((Hugs))) to you @Begonia.