Treating Osteoporosis: What works for you?

Hi @contentandwell. Yes, the subcutaneous injections are given by you on either side of the tummy within two inches of the navel. Be content and at ease.
Chris

Hi, GailBL, thanks for the suggestion. I was on Medicare Advantage for 10 years. When their profits dropped in Southern California because too many seniors lived there, they made MA totally unavailable. I now live and register in MN. So I am on my second year of MN with a CA add on just in case I stub my toe while there.

I will ask my agent in plenty of time.
May you be free and content.
Chris

@jk

Have you looked into Medicare Advantage for your coverage? I switched 2 years ago and my husband, who's also on MA, and I are both happy with it. We are on the Kaiser Permanente Orange County plan, and although we have co-pays, it's still less than my former Medicare along with Supplemental Insurance. MA covers medication, and I pay an extra $20/month for dental, hearing, eye care, and gym membership. Medicare Advantage costs only the monthly Medicare cost of $140. The yearly deductible is less than my previous Medicare plus Supplemental.

You may find that it's a good thing for you. I recommend that you check it out.

@artscaping I presume the varying prices have to do with the "donut hole". When I was on xifaxan, a very expensive medicine, prior to transplant, it was costing us between $600 and $700 a month until we hit the donut hole. Then we had to pay even more and after we came out the other side of the donut hole the cost went way down.

With Tymlos, do you have to inject yourself daily, and if so where do they recommend injecting it?
I really appreciate your input. Thank you.
JK

Hi JK, The cost of Tymlos is like a rollercoaster depending on when and how much my medicare supplement is paying. Last year it ended up being approximately $131/per month with the nominal amount of $90 in October, November, and December. So far this year it has been around $300/mo. I have a by mail supplement and because of the COVID-19 purchased 3 months at a time. It was on backorder through my local pharmacy. So the manager found me folks to chat with at the manufacturer and a specialty pharmacy. My Endocrinologist and staff started calling their other patients and providers to see if anyone had a "tide me over" supply. What a wonderful world this can be.

I wish I could be more helpful......I just don't do $$$$rollercoasters well.
Chris

I was pretty darn overwhelmed with that kind of assistance.
May you feel safe and protected.

Did your doctor recommend Evenity?

Heritage: With eating right and taking supplements and with exercise, I believe you can turn your osteopenia around. I'm in a group on FaceBook called Osteoporosis Natural Remedies, and the women there are not taking the drugs used for osteoporosis, Instead, they are eating as much nutrient-rich food as possible and supplementing the vitamins and minerals they can't get enough of through food. They are doing all kinds of exercise - from trampolines to walking to OsteoStrong (you have to check if you have OsteoStrong classes near you). I have very bad osteoporosis, partly due to a pituitary tumor that went undiagnosed until I was 61 and partly because I drank cola for many many many years (okay, my entire adult life until I turned 64). I eat as much calcium as I can, and supplement the rest. I take vitamins D3 and K2 (mk4, mk7), boron, magnesium, and I drink grass-fed bovine collagen peptides in my tea once a day. Because my osteoporosis is so bad, I am also using a small estradiol patch (I only use 60% of the patch - that's all you need to make positive change - and I take progesterone for 10 days every other month. It is time fo me to get another DEXA scan, but since there is so much COVID 19 in my area, my doctor told me to stay home (I have no immune system). I garden for several hours every day and I am careful to get between 10,000 - 20,0000 steps in every day (I live on a hill - so it's a workout). Many women in the Facebook group have posted progress made doing what I am doing, The reason I chose not to use the bone-building drugs is because I spoke with two women who got osteonecrosis just the night before I was supposed to get my first infusion of Prolia. That changed my mind in a hurry. Upon further research (and with my doctor's help), I learned that those drugs give the appearance of building bone but what they are actually doing is not letting your body eliminate the old dead bone. When you go off the drug, your body eliminates the "new bone" in your urine and you are back to where you began. Add to that the risk of osteonecrosis, and it just wasn't worth it to me. Vitamin K2 (mk4, mk7) is very important as it makes sure the calciujm you are getting goes to your bones - not to your arteries and kidneys. Boron is also important. I avoid all fizzy water which robs your body of phosphorous. Then I took it a step further - I avoid all sugar - in all its forms, as such is very bad for your bones. It has been two years and I can't wait to see my new DEXA scan score - but I just have to wait until the outbreak of COVID is gone from where I live. Before I started doing all of this, I was fracturing - my right wrist broke and I don't remember hitting it or anything stressful. I think I came close to having a broken left ankle. But that was two years ago and (knock on wood), nothing else has broken. I am very active, so I think this is a good sign. I wish everybody the best of luck. I spoke to maybe 6 doctors before I made these changes, and the ONLY advice they had for me was to take those nasty drugs. I just didn't see that as an answer. I read everything I can get my hands on to better understand osteoporosis. If I had some extra money, I would see a nutritionist and a functional doctor. Try to eat as many of your nutrients as possible,. I also take a good vitamin C (Pure Synergy makes the best I could find), Omega 3s, probiotics, a good food-based multivitamin, and a B complex. I hope this helps. Just remember that every body is different. I highly recommend that Facebook group called Osteoporosis Natural Remedies - there are lots of success stories from people there who are doing what I'm doing - in fact, that's where I get a lot of my ideas. Since you are only 39, another good resource is a book called "The Pause." Try to get the most recent copy because they update that book all the time. That's where I got the idea to go back to low-lose estrogen and my OB/GYN agreed it was a good idea for me.

Silly me - I didn't look at the date on this post by Heritage - I see it is four years old. I'm going to leave my reply as it is for anybody who may not have seen my previous posts.

Thanks, @artscaping did Medicare cover Tymlos? If not how costly was it? I believe cost is a reason that my endocrinologist is not suggesting it.

I had planned to start on something after my April MRI. I wanted that out of the way with good results before embarking on a regimen with one of these drugs. Now I’m delaying it until after October when I will have another DEXA and a consultation with another endocrinologist. This is such a complicated decision that I feel that input from two endocrinologists, both very highly regarded, is a good thing to do.

I wrote on the portal to the endocrinologist I have already seen mentioning information I have gained. I was pleased with her reaction, she praised me for researching things, not resent it as I hear some doctors do. I had a NP in the transplant department tell me to stop my silly habit of googling! I have avoided contact with her since then. I think when medical professionals react that way it’s because they feel threatened.
JK

@nancyguy all of us with osteoporosis are in a bit of a pickle. We seem to be taking meds that are as potent as drugs used to treat cancer.

@sue225 I did use a walker for a while and we had to fly to Denver for my son’s wedding less than a month month later so I had airport assistance. There was no way I could have navigated walking to the gate if it was far, and it always seems as if no matter where we go we end up at the furthest gate. I was able to walk without the walker and did not use it at my som’s wedding but did bring it along in case I tired. So basically I could walk short distances without assistance, and didn’t go out to the supermarket for a while, my husband had to do the shopping.

@rosemarya you are so fortunate that you didn’t have to remain on prednisone for long as I have had to due to low blood counts. I was told by my endocrinologists that Prednisone Is the culprit in my osteopenia degrading to advanced osteoporosis.
JK