Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
Liked by Mamacita, Volunteer Mentor, Chris Trout, Volunteer Mentor, Leonard, parrotqueen
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.
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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.
I was pretty darn overwhelmed with that kind of assistance.
May you feel safe and protected.
Liked by GailBL, Volunteer Mentor, JK, alumni mentor
@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.
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.
Liked by John, Volunteer Mentor
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.
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.
I was checking out Kaiser Permanente a few years back. They turned me down. I'm not kidding. They said I was too sick. So I think Kaier is fine until you get sick(er(. You get a lot of services for your money.
Liked by lioness
Thanks for the suggestion, @gailb, but I have considered it and for me it would just not work as well, from what I have heard there are too many restrictions, etc.
I almost missed your response. Since I am less active now and have joined the ranks of "alumni mentor" I don't go through all of them. It helps if you address the person with the @ and their name so they will be notified. My "name" is contentandwell.
@artscaping And those injections are daily, correct?
Fosamax does not build bones. Supposedly, it helps maintain bones as they are. I have been taking it since last November; but am considering discontinuing it, because of numerous cases of femoral fractures, jaw problems, and some cases of cancer of the esophagus. Because I have had radiation for breast cancer, I cannot take any bone-building meds except Evenity–which I will not take because possible side effects include stroke and heart attack. The FDA refused to approve Evenity until (finally) April 2019. I take vitamin and mineral supplements, and exercise regularly. Of course, all of us must make our own decisions. Good luck to everyone!
Hi Nancy. Also having the same name. Your situation is very similar to mine. I have been on alendronate for a year and a half and am seriously considering stopping. These forums and other sites have been helpful in researching the drugs and meds as well as provide nutritional info. I was Taking Evista a year and actually my numbers which were osteopenia improved 1%. my gyn dr. Didn’t think that was good enough. She really pushed bisphosphonates. Because I was experiencing so many hot flashes I switched to alendronate. Well a year with that and my numbers dropped over 3%. It was a horrible time where I had been caring for aging parents 1000 miles away. I lost 13 pounds and know I wasn’t eating well or keeping up with vitamins. My numbers weren’t bad to begin with. Even the endocrinologist thought so. My next dexa scan is in December. His NP said if I don’t improve the next step is Prolia. I was reading the brochure waiting in exam room. No way will I start that. So I appreciate input from folks like you on these forums as we navigate the best options for our health.
Liked by lioness, nancyguy
@contentandwell, That is correct. Tymlos injections are daily for at least 18 months.
Liked by JK, alumni mentor
Thank you, Nancy 1228, for your reply. Certainly seems like the stress caring for your parents and loss of weight, etc. caused the drop. I am going to research holistic treatment more extensively. I wish you the best of luck. Saying a prayer that you will find the best option for your health.
Liked by JK, alumni mentor, lioness, nancy1228
Many times I have come here or to other medical chats and I have encouraged people to pay attention to their bodies and communicate with their doctors – instead of just doing what the doctor tells you to do and accepting unwelcome consequences. This has been met with a lot of criticism. I came across a doctor who said basically all the same things I am saying. Here is just a small snippet of what they said, "We operate from a deeply held conviction that in the long run each person is his or her own best physician. Practitioners may have greater medical knowledge and technical expertise, but there is no one who knows more about what is best for this patient, on the deepest level, than the patient. He or she has traveled roads on the life journey that we have not. The health challenges he or she faces are a part of that journey, and practitioners are privileged to be able to grow and learn from the people they work with." This can be found in a subchapter called "Be An Actualized Patient" in a book called "Thyroid Power: 10 Steps to Total Health" by Richard L. Shames M.D. and marilee Halo Shames, R.N., Ph.D. This book talks about many health care concerns – not just thyroid. I highly recommend this book to anybody who is seeking better health and a way to communicate with doctors. As I always say, doctors have enormous case loads and there are SO MANY medications and diseases and conditions for them to keep track of. Even the best doctor may only know a little about each problem. And they cannot be inside your body – so they have no idea how you are feeling when you take a medication. If you just want to read this one section, it is on pages 101-104. These doctors encourage the patient to speak up and communicate with their doctor – don't just listen and comply.
Liked by Chris Trout, Volunteer Mentor, lioness, migizii, julie2020
Thank you. I wish you the best of luck and prayers as well. I keep reading these forums and follow a couple FB groups recommended by @parrotqueen. The shared knowledge and experiences of all of us is valuable as we research our best health options.
Liked by nancyguy
I came across this article this morning and it is interesting. Please, be aware of your sources when you are investigating treatments.
Dr. Karpf’s Response to Bone Drugs Article
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, migizii, sue225 ... see all
Thank you for this; I wasn't aware of this organization. The exercises they show are helpful.
Some follow up @gailb. I checked on my Supplement. It is the "F" package that will only be available after January 2021 (or was it 2020) with the Medicare Supplement programs, not the Advantage programs because of other services provided by independent insurance companies. Thanks again for you help.
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