Osteoporosis Treatment Availability

@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

Windyshores plans on starting ReClast at a trial level of 20% dose. She also started Tymlos at 25% dosage. This option should be available to more of us rather than risking major adverse reactions. I was denied starting Evenity at half dose because that is off-label. Yet we are bombarded with news of off-label use of Ozempic. Then there was off-label use of hydroxychloroquine and ivermectin for Covid. Concern for the well being of patients seems to be missing. If no major problems are encountered with the trial doses, the patients can relax and proceed. A month or two delay can be tolerated. Osteoporosis is not like cancer where time may be critical. Right now I am not pursuing treatmrnt as I have no trust in the providers for a variety of reasons. Trust is important.

@normahorn, @windyshores, @johnbishop, and all...I look forward to hearing from Windyshores after her procedure to see how it went. That's possibly a good solution for some folks. I have no idea if the % of med will make a difference in the efficacy, length of its working or other issues. I do know the infusion center at Mayo and my doctor were very clear the timing of the 2nd and 3rd infusions is extremely important. They are required to be a certain number of days apart. Why? Don't know but they were specific. I didn't file it as I know they'll take care of making sure we meet the criteria. But, my 2nd will be very close to July 11, 2024.

It was also important to have the procedure within 30 days, I think, of the bloodwork which cleared me for the procedure. Calcium levels, kidney functions, and such are important and must be approved prior to but within 30 days of the procedure. Makes sense.

I found the staff and providers at Mayo Florida gave me excellent information, pre-testing, and care. I have had deep trust issues as you mentioned Norma and many disappointments and poor care through the years. I have fought hard to be heard. I have, in my later years after many health problems I shouldn't have endured, and am still suffering the consequences, so I'm very pleased to say I do trust my health care team. There was 1 doctor I refused to revisit, another I simply chose to begin to see another person in the department. I require to be treated with respect and courtesy, to be listened to and heard, and for the staff in all areas to answer my questions. It happens now at Mayo.

I pray you will find this trustworthy care team and the relaxation it brings. I'm in charge. I have choices and I make my choices re my body and health care. These folks honor that and we work as a true team.

Blessings, Elizabeth

The test dose that is 20% of the usual dose is to be followed in 3 months by a dose of my choosing. My other endo told me that a half dose is as effective as a full dose.

My kidney values came up slightly in testing today so I am encouraged. My main endo fit me in this week to discuss how to proceed.

@windyshores, @normahorn, and all...Good to hear from you Windyshores. It sounds like perhaps you're dealing with borderline kidney issues or a number in your bloodwork that the doctor advised you to proceed cautiously toward Reclast? If I'm reading between the lines well, you and your endocrinologist came up with this smaller dose per dose more frequently to allow you to have the help from Reclast without the kidney harm? If so, this is great!!! You may have a good solution so you can still partake of the bone treatment you need. I love it!

This sounds like the way my doctors and I work together to make decisions tailored just for me and my crazy body. It's a real treat to have medical folks who will actually work with me like this and who treat me like I might have some information, and knowledge about my own body that can be helpful to my care. What a wonderful feeling this is!

Keep us up with how things go. I wish you good things from this treatment. Just think, you're paving the way for someone else who may need the same type of procedure manipulation to make it work for them. You're a trailblazer.
Blessings, Elizabeth

@pednurse61, and all.
Hello, I'm sorry your mother-in-law had such a terrible reaction to Reclast. What sent her to the ICU? I had 32 tough, 3 difficult days but I didn't need that intensive care. Did she drink a lot of extra water to stay rally hydrated? Also, did her doctor check her kidney functions carefully prior to the procedure and her calcium and other bloodwork?. My doctor told me I could not, not have the Reclast if my calcium levels and other factors weren't in line. This can cause serious kidney issues. It also had to be done within a certain number of days of the bloodwork, so we were extremely careful I met the criteria.

Next year, when time for the 2nd infusion, I'll weigh all the conditions and remember your message. Believe me, I'll also remember this week.
The decision re the 2nd IV will be made with deep thought.

Thank you for being part of this discussion for me and others. It's so helpful to chat with others and weigh all sides when making such decisions. Thanks.
Blessings all.
Elizabeth