Osteoporosis Treatment Availability

I am back to square one as the endocrinology center called to say they do not offer Evenity at their location.

I second that! Northwestern Medicine has telephone and video appointments that make your life so much easier. It's different than the traditional doctor visit you're used to, but think about it - why does the Endo doctor actually have to lay hands on you? He/She doesn't do the blood work, films, etc. so they can just put the pieces of the puzzle together from everyone else's results and create a treatment plan for you. I see Dr. Arlene UY there and she's wonderful - by phone and in person♥

Thank you for sharing this with me. I am glad you are taking actions on your health and battling this disease we share. I just wanted to share with you an excellent resource that I have been reading. " Great Bones" by Dr R Keith McCormick. I encourage you and anyone else that has Osteoporosis to read it. I am very discouraged at the moment and trying my best to find a specialist to listen to my concerns and actually care about my health.

Having looked for an OP specialist in the SF Bay area, and coming up with none, I am wondering if anyone knows if Medicare will pay for Telecare visits. Specifically with a specialist out of state. Has anyone tried this?

I have found them to be very knowledgeable and helpful whenever I have called Medicare, so it's worth spending a little time on the phone. It may boil down to whether or not they take into consideration this new level of care. I found this link to Medicare's website to be helpful as well:
https://www.medicare.gov/coverage/telehealth
They specifically say you can get coverage for a doctor that is out of state.
The link below is helpful as well-
https://www.cms.gov/newsroom/fact-sheets/medicare-telemedicine-health-care-provider-fact-sheet

What side effects did you have? My doctor advised me to take it since I was recently diagnosed with severe osteoporosis. I’ve researched it and afraid to take it. Thanx for any info you might offer.

Medicare definitely pays for telehealth. Traditional Medicare does - I am not sure about Medicare Advantage plans.
Out of state depends on the license of the practitioner. I am a mental health professional and I provide telehealth appointments. My license requires the patient to be in the state where I am licensed, but I can be anywhere. So, it depends on the license of the physician.

I see. Thank you for that. I will check with the doctor I have in mind.

You are all so full of great information and help for each other. Impressive. I love this Connect site. Has helped me in so many ways over the past several years.

I developed severe osteoporosis at age 35. I'm now 76. At that time, a century ago, there were no docs to treat this, and certainly not for someone so young. After dealing with multiple docs, PCP, and neurologists at that time, told I would be in a full body brace in 5 years and a wheelchair in 7-10... I said NO, fired that doctor, and walked out of the hospital after tests determined to find solutions, someone to help me live my life as a mother with an active young son.

I found a young, new-in-town neurologist who helped as he could in those years. I was treated with oyster shell calcium daily and water therapy. Both helped, but now, after 41 years, I am seeing an endocrinologist at Mayo Jacksonville. Took some time but I'm actually getting treatment for my bone issues. Real treatment.

After a nuclear bone ct scan and a series of bloodwork, she has ordered annual Reclast IV infusions for 3 years. Hopefully, the bones will develop less build-up and be less brittle with less chance of my demise from hip/back breaks in a fall. I have fallen several times, with some serious injuries, but no hip break yet. I did have a vertebrae crack and had a very successful procedure inserting a 'cement' to stabilize the bone and disc. It was wonderful. Check out my story in the August issue of the Mayo Clinic Newsletter if you get a chance. It's so much fun! The reporter found me from Connect and wrote about my adventure with the spine procedure and its success. Such an honor and really fun...

After 15 years, it's just now beginning to ache if I move the wrong way or lift something I shouldn't. I've been blessed, but finally am getting progressive care for my bones. I'm hopeful Reclast side effects will miss me and I will see less full-body pain, which is indeed difficult. I'm also beginning another round of hopefully forever therapy pool, 95-degree temp water, 2x weekly forever. That water therapy is miraculous. I highly recommend this as ongoing therapy for bone/muscle/stress pain relief.

I am truly blessed to live in Jacksonville and able to enjoy the Mayo Clinic. My son actually changed insurance in order to have coverage at Mayo for his health needs. It's been a wonderful gift for both of us. My overall health care previously was poor for most years and fairly good in some years with local hospital health care. Mayo has surely made a huge improvement in my life and I believe has lengthened my life greatly. Connect has given me the support and encouragement of 'friends' who understand and are experiencing much the same health issues, physical and mental. I'm so grateful!

Fight to get in touch with a large hospital, preferably teaching, like Northwestern. Video is wonderful in many areas when the physician has no need to touch or examine your body in person. Or, after an initial visit, video is very simple and successful for both docs and patients.
No issues with Medicare paying for the Zoom visits ever. So, push ahead and see what your determination and strength find for you.
Blessings as you go through this strange, challenging health journey. elizabeth

@colleenyoung, @loribmt, @johnbishop, @ susanfalcon52, @judy58, @me49, @normahorn, and all...I have an update on the osteoporosis treatment and care I'm receiving. As I mentioned, I'm now seeing an endocrinologist at Mayo Florida in Jacksonville. My city. I'm blessed to live in the city with the clinic and have my medical care at Mayo since 2019 after several years of health deterioration. Again, I am thankful for the excellent care and guidance from Mayo that has lengthened and improved my life.

After the nuclear body scan and bloodwork showed my bones are in a mess, basically, the doctors discussed my plethora of issues and decided to go forward with 3 annual Reclast IV infusions. Wanting no delay, I had the first IV on July 11 at 2 p.m. As always, the staff was excellent and took great care of me and any needs. After a full day, including the required walk-through in the Mayo Gift Shop and at the deli getting yogurt/berry/granola parfaits for the next 2 days for breakfast and a spinach wrap turkey/bacon/lettuce/tomato sandwich, 2 days of food basically...I got home at about 5ish and went to bed to rest at about 6. I was tired, beginning to ache more as is my normal body reaction after a semi-active day.

I noticed the aching was getting worse and stronger, so I applied Voltaren Cream on my legs/feet/arms/hands/back/neck... arthritis locations, and some muscle pain. About an hour later, I was really hurting and applied some CBD/CBG lotion on my legs, feet, and arms.
Folks, by 8 p.m. I was fully aware I was going into a Reclast reaction.

I had no sleep for most of 2 nights and all day Wednesday, the pain was so severe. I began hurting with serious bone pain in my heels, then wrists/fingers/arms/feet, then hips, neck, and back. I felt it traveling to different parts of my body...I was groaning and unable to move without increased pain and aching. The muscles and bones were screaming at me for getting that medication! I was groaning back. Then, add muscle cramping overall, and spams that affected my entire body, with tremors.

I live alone, so the time was pretty difficult. My dear kitty lay her head on my forehead and her paw on top of my hand, She comforted me and held my hand, for most of 2 days. Amazing comfort.

I began several years ago keeping a little kitchenette in an empty upstairs bedroom, with a small fridge, microwave, coffee maker and utensils. I keep Diet Coke, bottles of filtered water, greek low-fat yogurt, berries, fruit, and whatever I want in the fridge so I can stay upstairs when I have an episode such as this or just don't feel up to going up/down the 14 stairs to the kitchen. I don't have an on-call support system or family, so this is essential to stay put.

Tuesday night was tough. At 3:30 a.m., after an eternity of serious pain and aching, I called the Mayo number to see if a physician was on call to advise. I didn't consider the ED as I knew there was nothing they could do to relieve my situation. Saline IV? Pain meds? maybe, but I was doing that at home by drinking my water, about 4-5 /16 oz bottles during the first night actually forcing myself to drink as my brain put together the need to flush the system to move the medications throughout and to get rid of toxins my body was putting out. So, I drank.

I was burning up, my body was hot to the touch, so the cool water felt good. I used the creams as I could. I took Tylenol throughout. It wasn't easy to do anything but they did relieve some of the stress-related discomfort and tight muscles. I also took regular meds including Robaxin for muscle relief and anti-anxiety Xanax and nortriptyline, and other meds. I'm thankful for them as I'm sure they were helpful overall.

I did speak with the on-call endocrinologist, poor thing. She was excellent help, assuring me this is not normally seen to this degree, but flu-like symptoms were not abnormal, the medication was moving through my body and I would begin to feel relief in 8+ hours. Goody!

Chatting with her was indeed helpful. I was experiencing this alone and she gave me the reassurance my brain was thinking clearly about the situation. I had a severe reaction with 3 days of bad full-body pain and aching, a very bad headache, and more after the 2nd Moderna vaccination. At that time, I thought to myself...' Self, this is what they said might happen. You know your body always goes too far, the extra mile in choosing unusual illnesses, and serious reactions. So this is your body's normal. You, my dear Elizabeth, must roll with it and let it pass. I did. It did. I reminded myself this was evidence it was working to help my body. May or may not be true, but the thought process worked and got me through the 3 days of torture.'

I did the same here. Today, Friday is a much more normal day. It's pouring rain, storming outside, so my joints and bones are fussing anyway, but nothing like Tuesday, Wednesday, and Thursday. I made it.

I sent a message to my doctor via the portal on Wednesday morning to let her know my reactions and the help I received from the on-call. I've received several messages from the nurse working with this doctor who has almost a decade of experience with this procedure and patients. She's an angel.

She reiterated the importance of staying hydrated before, during, and after the Reclast. She said the creams could help...they did. No caffeine, good rest goes without saying, but become active to normal as soon as the body allows. I don't want to undo any good by becoming more deconditioned.

I'm following her guidance and doing very well. I'm hurting a lot now, but I do some when this weather comes to visit. Now it's a bit worse, but not like the reactions. She several times suggested some patients are afraid to have the annual infusion because of these possible reactions. I say, 'NO!'

My response, and thoughts: my tongue wasn't swollen, my mouth was normal size, my throat was fine, no serious intestinal issues, no hives, and no life-threatening reactions, so my body was really reacting to a seriously serious intrusion by medication, and responding telling it to get out, go away.

I say, ok. Reclast, you are welcome. Come on every year. I welcome you because my body is telling me you're present and will work hard to make me healthier, live a better life, and hopefully longer. I will not be afraid. This is a good thing, I can and will do fine!

Well, now you know one of the bad few days you may but probably won't experience if you choose to have a Reclast procedure. It is my choice. I choose to have this medication so it can help me. I can choose not to have it. If, indeed, the symptoms were not to diminish within a few days, if it interrupted my life in a longer-term, serious way, I'd think strongly about not having the IV. I don't want any time taken from the quality of my few years left unless I see it as productive.

My thoughts. We each address these issues, these interruptions in life however we choose. I pray you will find the choices that will help you through this crazy journey. It's a real trip!
Blessings all, Elizabeth