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Osteoporosis treatments

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola!

I was wondering if anyone is going through treatment for osteoporosis. I developed osteoporosis after having 18 treatments of chemo six years ago. I am currently taking Risedronate Sodium 150 MG Oral Tablet once a month, but I feel like I am developing a side effect: acid reflux. My doctor wants to do a bone density scan, DXA, before changing the medication. I am concerned about having another DXA, last one was in 2015, and taking a medication that may cause other problems especially with kidneys. Please advice, I greatly appreciate it!

Tethys41's picture
Tethys41
Posts: 1370
Joined: Sep 2010

I have had success with taking vitamin D3 and vitamin K2 and doing weight bearing exercises as well as a little impact exercise (like jogging or rebounding for only 10 minutes a couple days a week).

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

One of the side effects of ER+ breast cancer medications is bone thinning.  I did develop mild osteoporosis and my oncologist was ready to put me on a bisphophonate.  She sent me away with different ones to research and said "pick one".  I couldn't decide and I asked my pcp which one she likes. She looked at my Dexascan and said "not yet".   I switched from Arimidex to Tamoxifen and my scans actually improved.   I'll have another dexa in about 8 months and we'll see what this one shows.   IF I need to take meds, I will.  In the meantime, I've put it off for 5 years now.  I think "they" don't want your bones to thin too much because breast cancer likes to metastasize to bones.  I guess I have been lucky.  I was planning on choosing one of the IV meds because they are administered only once or twice a year.  Acid reflux is a side effect of the oral meds.  That's why you're not supposed to lie down after.  I was also told by someone with an MD (can't remember which doctor it was) that one does not need to be on meds forever.  That may be why your doc wants to look at another dexascan.  You may have improved.  And that's what I was told.

Suzanne

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

New picture? Very nice !!

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

I suffered a insufficiency sacral fracture after my treatment probably due to my pre-existing osteopenia, 28 days pelvic radiation and steroids. I'll get a dexa in December and we'll decide what to do. My endocrinologist suggested the IV one or the one shot a year because of the reflux problem. I'd been on oral Fosomax, Boniva, etc. years ago because of early menopause (39). They only leave you on them about 3 years. My concern was for the very rare "dead jaw" side effect so you want to have your teeth in tip top shape before you start any of them. Good luck. 

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Ladies,

Thank you very much for all advices. Should I be concerned about the radiation in the DXA?

Gracias!

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

I wouldn't hesitate to have a dexascan.  However, do get a vitamin D check.  I was able to improve my bone density from borderline osteopenia to normal with Vitamin D supplements and some calcium.  It's best to get most of your calcium from food.  There is current research showing that too much calcium from supplements can cause problems.  I take at most 600mg of calcium in supplement form/day.  And because I don't metabolize vitamin D from the sun, under medical advisement I take huge daily doses of vitamin D3.  

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Thank you very much for your input! I have been taking vitamin D for a long time now, as well as 500mg of calcium as supplement, and still the osteoporosis got worse :(

I have been on medication for about 2 1/2 years, going to the gym and eating better.

Tethys41's picture
Tethys41
Posts: 1370
Joined: Sep 2010

Hi Fayard,

Unfortunately, vitamin D without vitamin K2 does not absorb well to address bone loss.  You need them both together.  I struggled with bone loss for over two years following treatment and finally had success with this combination.  Additionally, supplemental calcium is not beneficial for bone loss and can actually cause harm by accumulating in your blood vessels.  Magnesium supplementation is much better because it helps you absorb the calcium you get from the food you eat.  Most of us are deficiant in magnesium and it is so essential for proper absorbsion of vitamin D.

Tethys41's picture
Tethys41
Posts: 1370
Joined: Sep 2010

Well, I sure don't want to butt heads with MAbound again.  What I can tell you is that I keep connected wtih more than 50 ovarian cancer survivors on a separate forum.  We all see a naturopath for our continued maintenance and we are all on magnesium supplementation.  Naturopaths are all for obtaining your essential vitamins and minerals from a natural form, such as diet.  But in some cases, including a cancer diagnosis, that is simlpy not possible.  There is also a link between low magnesium levels and cancer, for what it is worth. One of the after effects of chemo is magnesium deficientcy and we aren't going to get the amounts we need from food alone.  I am not going to tell you how much to take, because everyone is different, but everyone in our group takes more than the limit that has been mentioned.  That upper dosage sounds like something quoted from the conventional medical community.  There are various forms of magnesium, citrate, malate, glycinate, sulfate, chloride.  Some will affect the GI tract, while others will not.  Some are more absorbable than others.  Many in the group I am in actually rely on magnesium citrate to regulate their bowel function.  My oncology nutritionist has indicated that topical is better absorved than oral forms.   This is one reason I strongly feel that having an ND on your medical team is such a valuable asset.  Conventional medicine has a very different perspective when it comes to supplemental vitamins and minerals and often what conventional doctors label as too much or risky, is much less than what naturopath's recommend.  Remember, conventional doctors are educated in using chemicals to address symptoms.  Naturopaths are educated in how the body works and addressing conditions at their root cause.

MAbound
Posts: 874
Joined: Jun 2016

"We all see a naturopath" and "Strongly feel that having an ND on your medical team is such a valuable asset" is in sync what I tend to get up on my soapbox about whenever supplements get mentioned in these threads. One needs knowledgable guidance taking supplements even though they are available over the counter.

Not everyone has access to good ND's however and it's not fair to paint all convential MD's or DO's with the same brush of ignorance or prejudice regarding supplements or alternative medicines.

The main thrust is that we are all individuals that have different issues and medications that we are dealing with and one-size-fits all advice such as you-need-to-take-magnesium-with-vitamin-D while true can get some into trouble if they resort to self prescribing. Taking supplements is not that simplistic. I think this bears repeating over and over that using them is not without risk to some.  

I'm afraid I'll probably keep irritating you by repeating myself on this point ad nauseum, but I don't see that as butting heads with you. I'm hoping that instead I'm adding food-for-thought about what's been shared. I believe our newer members need to hear these caveats for their own well being. You seem to think I'm strongly anti-alternative medicine, but I actually feel there's great value in complimentary medicine and still like to read your posts. 

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

I agree MA. Supplements are not non-toxic and should be used with care. I'm a dietitian and I'm all for appropriate supplementation with guidance. Finding that credible guidance is sometimes difficult for many of us (myself included, despite trying desperately. Even though I'm an RD, cancer is not my specialty but I know that certain supplements at certain levels could do more harm than good and interact with many medications.  I'm not saying to not proceed but proceed with caution. 

Tethys41's picture
Tethys41
Posts: 1370
Joined: Sep 2010

MAbound, what I don't understand about your responses to my comments is that you say essentiall the same things I do, but incinuate my information is inaccurate or not emphasizing the right points.  Or you claim I made a statement, that I did not, i.e. you need to take magnesium with vitamin D.  You also dislike my opinion of medical doctors and their view of alternatives and supplements, but if you recall the last time you said my statement of this nature was unfair, the question was posed by another member as to how receptive people's oncologists are to alternatives and the vast majority agreed that they don't support them.  

I offer my experience because so many women only know what conventional medicine has to offer.  I never tell anyone to recklessly make choices or self medicate.  There are a whole slew of side effects associated with anti-osteoporosis drugs, but most people resort to those because they honestly aren't aware of less harmful alternatives. I share my experience to make people aware of alternatives.  

I appreciate your contribution about drug interactions and I think that emphasizes the point I made, that a medical professional with the proper background is an asset when making these choices.  I appreciate the fact that not everyone has access to a natuopath or the financial ability to pay for one.  But it is unreasonable to not share information about how they approach this disease just because not everyone here has the ability to hire one.  There are other resources  available to people who cannot arrange to personally consult with a naturopath.

I don't come here to have my experiences dissected and the wording twisted to sound like I am giving bad advice.  I come here to support women going through difficult or preplexing situations.  As appealing as your offer to continue to irritate me and make your point ad nauseum sounds, honestly, I will not grant you that opportunity because this really is not worth my time or effort and I don't think that it's beneficial to the women here.  I wish you well and bequeath the uterine cancer board to your fine care. 

Forherself's picture
Forherself
Posts: 231
Joined: Jan 2019

And that makes MD's standard of practice different than a NP in regards to supplements.  Supplements are also chemicals.  .   DO's follow MD guidelines but NP use supplements that say "support" and " enhance".    What is the normal dose for Mg.   And what is the dose of the supplement you are taking.  And why doesn't a One a day vitamin do the trick.  supplements are just not standardized and FDA approved.   

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola!

Thank you very much for your input. Yes, I have been taking D vitamin with K2 for about 6 years now. I also take calcium with magnesium, as well as strotium. I am vegan, so I feel like I have to complement for the lack of calcium.

Thank you!

MAbound
Posts: 874
Joined: Jun 2016

Magnesium is a mineral that is also one of the 4 cardiac electrolytes (sodium, potassium, and calcium are the others) that impact the electrical conduction regulating your heartbeats. They need to be in balance with each other to avoid inducing arrhythmias so you really need to find out first if you have a deficiency and get some guidance on the dosage and form of magnesium to take for your situation. It's still safer to get what you need from foods that contain magnesium.

Conditions that may deplete magnesium and necessitate supplementation include alcoohol abuse, diabetes, digestive diseases, and taking some medications like cisplatin, proton pump inhibitors and some diuretics. Chemo can actually cause magnesium and potassium levels to rise above normal levels because destroyed cells are releasing their electrolytes into the blood stream.

The upper tolerable limit to avoid magnesium supplement's side effects is 350 mg. That's in addition to what you get from food. Besides the cardiac concerns, they can cause upset stomach, nausea, or diarrhea (anybody take magnesium citrate as a bowel prep before surgery or for a colonoscopy or milk of magnesia for constipation?) If you are taking an antacid that contains magnesium you have to take that into consideration with your supplement dosage and would want your care provider to be aware of that.

Food sources of magnesium are whole grains, nuts, beans, avocado, shellfish, green leafy vegetable, coffeeSmile, tea, and dark chocolate Smile. So ladies, when the going gets tough....here's a good excuse to eat some chocolate ;-)!

Kidney disease interferes with electrolyte regulation in the body so electrolyte supplements for people with poorly fuctioning kidneys is dangerous.

Magnesium supplements, depending on which form is used, can also impact or be impacted by other drugs like some anti-diabetes drugs, statins, antibiotics, heart meds used for atrial fibrillation, potassium-sparing diuretics, gabapentin. Being on any of these drugs doesn't necessarily mean you can't take a magnesium supplement if you need it. It may just mean you have to be careful of the timing when you take them in relation to each other or your may need to avoid a particular form of the supplement. 

There's a lot to be aware of for taking this supplement, so get some professional advice before adding it to your regimen.

 

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola,

Thank you very much for your input. I had my my calcium, potasium and sodium checked, but I do not see magnesium. I will definitely ask my doctor to add it in my next blood work.

Gracias!

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hi everyone!

I hope you all are doing well and coping with not too much. I was wondering if anyone have heard about a new medication for osteoporosis: Evenity. It is a shot given once a month, for up to 12 months. I am having a bone density scan tomorrow, and depending of results doc want me t consider this option.

God bless everyone and thank you in advance for your input!

Armywife's picture
Armywife
Posts: 320
Joined: Feb 2018

Hi Fayard - I have severe osteoporosis and have been taking Fosamax.  I'd love to switch to something different.  Will ask my doctor about this!

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola,

Please let me know what your doctor says, as well as anything else you may hear from third parties.

Gracias!

LisaPizza's picture
LisaPizza
Posts: 229
Joined: Feb 2018

Looks like it has a black box warning, making it not necessaeily a first choice drug unless you are at unusually high risk.

 

Last Tuesday, the FDA approved the once-monthly Evenity for postmenopausal women with osteoporosis who carry a high risk of fracture, or patients who have failed or are intolerant to existing osteoporosis therapies with a boxed warning highlighting that the use of the drug may increase the risk of heart attack, stroke and cardiovascular death.

 

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola,

Thank you very much for your input. The information is correct: there is a high risk of increasing strokes and heart attack, if the person already has had one or the other one. I am now thinking why the doctor recommended me this, if I have never fractured any bones. However, he mentioned that this medicine is the only one at the moment that actually make bones stronger. I am having a scan later this afternoon. I hope my bones are not thinner.

Gracias!

Kaleena's picture
Kaleena
Posts: 1976
Joined: Nov 2009

I was also diagnosed with Osteoporosis.   I refused treatment due to the side effects as I was already having other issues with reflux, digestions, etc.    I do take Vit. D3 supplements.

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Thank you very much for your input. Unfortunately, my osteoporosis got worse two years after diagnosis. I decided to take the medication them. I am now thinking that I may be able to stop it for a while, but I have to have a scan first :(

 

Kaleena's picture
Kaleena
Posts: 1976
Joined: Nov 2009

Fayard:

Hope all goes well and you can stop your medication.   

Kathy

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Gracias Kathy!

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

All interesting about osteoporosis .I take fosomax it hate taking it.

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola!

I hope everyone is doing better than yesterday, than last week, than last year, and better than ever! I wanted to share with all of you my bone density scan results, but first, some background. My doctor took forever to call me with the results. Very much, he was not going to do it, until I called almost every day for 3 weeks. He first sent someone in his office to say the results were fine, whatever that meant. Keep in mind that I had an appointment with him right before having the scan, June. I made him promise he would call me to discuss results. Well, he forgets patients very quickly!

According to me, only my left hip got worse, my spine stay the same and my right hip got better. According to the doctor, that could not be determined, because each result (spine, hips) includes more (I asked what he meant by that, and his answer was “other things.”  I asked him several times if he could state that my spine stayed the same, and finally he say “You could say that, but we will need to have done some blood work to see how much your bones are turning.” I requested the blood work. He also talked to me about a new medicine approved by the FDA: EVENITY. He actually followed all the paper work with my insurance, and it was approved.

At this point, I am changing doctors. He could not even remember that I was taking medication 2 years ago, and stopped it because of severe side effects. If anyone knows anything about EVENITY, please let me know what your thoughts are. This is shot, once a month, for 12 months. I am sorry for such a long message, but I wanted to give you as many details as possible.

Love you all!

 

Results

AP Spine (L1-L4)

06/26/2019  -3.2            0.0%  BMD change

09/06/2017 -3.2            -9.2% BMD change

11/23/2011 -2.5             (First test, therefore there is not comparison)

 

Total Hip (Left)

06/26/2019  -1.9            -1.5%  BMD change

09/06/2017 -1.8             -0.7% BMD change

11/23/2011 -1.8             (First test, therefore there is not comparison)

 

Total Hip (Right)

06/26/2019  -1.9            3.3%  BMD change

09/06/2017 -2.1            -4.4% BMD change

11/23/2011 -1.9             (First test, therefore there is not comparison)

Kaleena's picture
Kaleena
Posts: 1976
Joined: Nov 2009

I just had a DEXA scan done.  I broke my arm (humerus at the shoulder requiring surgery).   They were concerned because it broke without falling that I may have bone metastasis so they did a bone scan.   It didn’t show any potential problems so they wanted me to get the DECA scan.  I got that done and it showed I have osteoporosis in my spine 

The odd thing is I had a DEXA scan done in 2015.  It also showed osteoporosis in the spine.  They wanted to put me on treatment  I said no at that time.   The funny thing is my current scan shows that my results were improved.    

Heres my results

Spine L1 - L4

2019.   -2.5.  / -1.2

2015.   -3.2 / -2.1

 

Left Hip

2019.  .0908 / -0.3

2015.  -0.6 /  0.1

 

Left Fem Neck

2019.  .0742.  /. -1.0

2015.   -0.9. /. 0.1

 

i don’t know if that has to do with different scan areas or not.   I didn’t want treatment because of the side effects.  I have enough issues already.  

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

Believe me, I understand not wanting any more side effects but my doctor convinced me to get treatment when she told me I wouldn’t want a hip fracture. I’ve had 2 shots of Prolia without any problems so far (fingers crossed). 

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola Kaleena,

That is great that the scan showed improvement, in spite of the fact that you had a fracture. That's odd Frown What did you do to improve?

I also refused treatment, after my first scan. I had to take prescription medication after my second scan, because everything got worse :(

Thank you for your input!

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hi Ladies!

I hope everyone is doing well! I finally went to see a new rheumatologist. We discussed my Dexa scan, and he agreed that everything is very much the same. However, he said that we don’t know if it were the medicine or not, Actonel, because I was only a year off the medicine when they did the scan. The new doctor now recommends Reclast, infusion once a year. Has anyone ever tried it? Thank you very much for your input!

PS: The new doctor did not mention EVENITY.

God bless everyone!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

Not familiar with EVENITY but glad to hear you are switching docs!  Geez!!!  

Mercorby
Posts: 12
Joined: Jan 2017

I've been going to OsteoStrong.  My insurance company would pay for Prolia so I decided to try this out. My doctor thought it was a good idea.  I get another dexa scan in Sept. 2020, but will have two PET/CT scans before then. The previous PET/CT scans saw the osteoporosis, so maybe the newer ones will see improvement.  I also take Vitamin D, calcium, and magnesium.

https://osteostrong.me/ 

https://www.osteopenia3.com/  is a good site for information on osteoporosis and osteopenia.

Good luck everybody!

 

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

I've had 2 doses of prolia. Last one was August. I'll have my dexascan in December. 

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Hola,

Please share your result, if possible. I am curious to know if it actually stops the bone loss, because according to my doctor none of the medications actually help to rebuild bone.

Good luck!

Fayard's picture
Fayard
Posts: 436
Joined: May 2011

Thank you very much for your input. Good luck with your treatment!

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