How do you halt the progress of osteoporosis?

@windyshores Hi! I have some catching up to do with you but saw this, good info as I'm seeing a physiologist Monday and onto PT (I hope). I have balance issues in addition to osteoporosis so this is another one of your little gems! I've been doing days and days of research on all of the drugs we've spoken of, hence my absence here. Came home from a 2nd opinion Endo consult earlier and my head is spinning even more. I figured I'd be thrown for a loop by personality alone but the meds? Fosamax/Alendronate—that wasn't really my radar. While many others, the side effect which immediately caught my attention: was esophagus and GI problems. Had esophagitis 3 times—one warranted a scope. They found a narrowing at the end. This one was different than the other 2 times: eating became problematic with some foods more than others. Swallowing felt like a test tube where food wouldn't go up or down, sitting in the middle. Gagging, gasping for breath, it had to go somewhere with me forcing it either up or down if I could. As I understand it, one must take it staying fully upright (no sitting, standing or walking) for at least 30 minutes after swallowing the tablet. And don't lie down after your first food of the day. Just starting to take a look but this sounds archaic to me, geez, Evenity's starting to flicker after hearing that! We went through the different drug classes...said she's 'old school' Evenity is too new for her, was lukewarm or middle ground on Forteo, Tymlos. I told her of my bad Reclast experience, the first drug I ever took for osteoporosis. She said that's still an option if I want to take the chance but was really driving home the Fosamax. I found it a bit odd to be asked 3 times during the consult if I'd made a decision yet. I went there because I couldn't make a decision and wanted a fresh eye or different perspective, she was a bit miffed about not making my mind up right then and there. Handed me scripts for labs which she wanted and pointed me to a LabCorp conveniently located on the next floor : / I feel like getting my jammies, stuffing my arsenal of pillow protectors around me in bed and watching bad TV or something. Lol, scrambled eggs for brain right now. I hope you're doing well!

Do you have esophagitis? Did they biopsy your esophagus?

I have GERD and could not do Fosamax/oral biphosphanate. I tried it for a week and then it went on my record that I had "failed" it so insurance would cover something else! If you have had esophagitis then I would think those drugs are a definite no. I am really surprised by this doc. Maybe it has to do with insurance?

Evenity seems to have fewer side effects but it newer. I was torn but decided on Tymlos due to the ability to adjust dose.

I think we all know how you feel. I am in my pj's at this very moment watching something light on Netflix! Cozy up! I hope you can do Tymlos or Evenity.

@windyshores My esophagitis has come and go. The first 2 times, once in my 30's, once in my late 40's I couldn't eat. I was dissolving carafate in water, taking forever getting it through a straw to calm it. Food only soups, things like that..baby food wasn't bad. Both times I lost around 30 lbs because it took so long for it to go away. The third time (with the disgusting gagging thing) I went to a specialist. Yes, they biopsied and were unsure if a little part might need to come off or they'd be able to stretch it out by putting some air instrument in while I was under anesthesia. That was about 8 years ago, nothing since but I eat slowly and did have GERD on/off. I'm on the upswing with that—nothing for a long time.

Now I've had a few hours to calm down from my ordeal today. I prefaced our dialogue by saying that I loved my Endo and was coming to her for a consult. After being shocked by her demeanor alone, the push to decide, the whole experience there and now reading about all of this—NO.

These drugs are wickedly expensive as you know, I'm not doing anything that's probably going to cause harm in another area and then possibly have the next try declined by insurance. I have Medicare A only—I have private insurance for everything else.

I remember you telling me the ability to click the pen and work up seems less scary. Do I see me giving myself injections everyday, not really. And I have a bleeding disorder—I bleed internally. I have to look another million times at these things, I forget what your side effects are just remember that night worked better for you.

Oh, I'm already there with those pj's! it's cold and rainy so I added my (2) 5 lb dogs to the mix!

Morning works better for me with Tymlos and the shots aren't bad. No bleeding, bruising rarely. If I do 6 clicks, NO side effects. If I do 7, some days I feel tired and some days I don't.

I have a Medicare Advantage Plan through BC/BS. If your income is low enough, Radius Assist provides free Tymlos. You contact Together with Tymlos for help. Amgen makes Evenity and they do not have an assistance program but do sometimes find funds through foundations, but it varies.

Thank you Teri for this info. I just got my LifePro Waver vibration plate....looking forward to seeing how it goes. The company offers free advice and assistance..so I'll take them up on that..it also comes with a lifetime warranty. I'm just finding the best place to put it...then I'll post as to how I find this machine and it's ease of use. So far it looks like fun!

Thank you @windyshores ! Sorry I got your injection timing wrong. Reading the summary notes of my consult doc yesterday and wondering if we were in the same room. I inquired about Tymlos several times, no answer. That might be a good query to the group: "Is your Doctor listening to you?"

I was able to get an assistance card from Amgen (Prolia/Evenity) to pay $25 vs. $250 after my insurance paid their portion. It's noted on the card after age 65 it's not applicable. My doc was able to get that extended for Prolia. I think a number of these drugs have other funds available. as the costs are outrageous. The legwork on my part was worth it and big kudos for my doc for pushing it through.

For over 65 like me those discounts aren't offered. I rely on Radius Assist for Tymlosand Amgen does not have an Assist program. So glad you got the financial help!

Hi, @bunky44, how much does LifePro Waver weigh? I look forward to hearing about their recommendations for bone density. I hope you enjoy it!

Hi @callallo, my mother and two aunts had severe osteoporosis. When I was competing in Judo tournaments in the mid-70s and training hard, I did not have periods for a year. Also drank a lot of coffee, smoked for a while, and drank alcoholic beverages regularly. I started weight training and exercises about 25 years ago to keep osteoporosis at bay, but it wasn't enough. I doubt the younger me would have been receptive to warnings about all the bone thinning behaviors I was engaging in. Hindsiught is 20/20 vision for sure!

Ah, the blithe indestructible younger us, lol. For what it's worth, my brother developed osteonecrosis of both hips and, after years of trying to live with it and thinking the pain was from a muscle pull, ended up in surgery at the Hospital for Surgery in New York City. The doctors were stymied as to why he'd developed it and brought a visiting international orthopedic surgeon into the consultation. His only question was to ask my brother about his alcohol consumption. My brother told him he was a recovering alcoholic but had consumed lots and lots in his drinking days. The expert turned to the other doctors and said, "We're seeing a lot of this nowadays and it's increasing. Were not sure of the exact mechanism but heavy drinking is hurting bones. Add smoking and the effect is worse. Add tons of coffee-drinking at recovery places and addiction meetings and the triple-threat kicks in." My brother was impressed because the doctor was the only doctor whom offered an explanation. And had described my brother's lifestyle in the preceding years exactly. Maybe they need to update public service announcements? I didn't know that fat and cancer interact to our detriment. And that fat is not a simple storage mechanism but a kind of complex hormone system in its own right. Nor did friends when I asked them and were fairly health conscious. Thank heavens for internet sharing opportunities so each don't have to reinvent the wheel...