Osteoporosis Treatment Availability

Elizabeth, please forgive me for acting like the two year driving their parents crazy by asking "why". With Reclast staying in our systems for up to two years after infusion, I am intrigued that you are required to get the second and third infusions on a very strict schedule . Can anyone explain that?

I have read that the second and other later infusions tend not to cause the same intensity of reaction.

I am going to request IV hydration before my infusion. I meet with the endo this week. MY eGFR went up to 45 despite dehydration yesterday. I would be happy to get it over 50 with hydration.

My endo is not reducing dose because of my kidneys. He is concerned I will have a bad reaction or that my afib will be triggered.

@windyshores, @normahorn, and all...That really sounds smart to me, Windyshores, to get IV hydration prior to the infusion. I must say the staff at Mayo Infusion dept and the doctors frequently reminded me to drink more water, pushing the hydration issue. I think the fact I pushed drinking water even when I was in pain and having difficulty, was the reason I pulled out of the reaction and am doing better daily.

Interesting your eGFR number is lower. Mine stays at about 60 so far. I don't have afib yet, do have edema issues due to primary aldosteronism which causes the body to hold sodium in the blood and kept my potassium levels quite low for many years. Taking Spironolactone as a potassium-sparing diuretic 2X daily and adding potassium supplementation keeps my electrolytes in pretty good ranges. I have pulmonary Sarcoid and vasculitis, neither active at this time. I've taken steroids for the last 30 years at times in high doses, and times in minimal doses. Those meds led to diabetes and of course, worsening bones.

My heart muscle is pretty strong. I have a 4.9 ascending aorta aneurysm that's stable at the high number and may well be my demise, as I doubt there will be major surgery in my future which is one important factor in getting treatments available to improve the days/years I have. My heart rate has been wonky but we've adjusted the medication and it seems to be settling down.

You know, I have a good friend 80 years old, and in pretty good health with none of our issues, more normal aging for her. I don't think I would recommend she have Reclast were it offered. Age is certainly an important factor in this treatment. At 76 with my health, this will hopefully improve my chances of living longer with fewer falls breaking bones that often leads to death.
I've broken vertebrae in a fall, multiple vertebrae are herniated, have broken several bones in both feet, and have debilitating arthritis throughout my body. So, Reclast has the possibility of reducing daily pain, slowing the deterioration of these bones, making my days more comfortable, and preventing fractures that could be devastating.

I hope you have a good chat with your doctor and are able to move forward with this treatment if it's recommended for your better future.
Blessings, Elizabeth

@normahorn, @windyshores, and all...You know, Norma, you have some great questions that are important for us to understand. I researched online and haven't found a direct answer to the timing questions. Just see different delivery requirements for each specific reason for giving the med. It seems those with multiple myelomas have injections every several months. Those like us who are older and post-menopausal women need the infusion annually for several years. In my case, a 3-year treatment, 1X annually, at specific days intervals. I have Paget's Disease and this is the only treatment for that. Other diseases require different timing.

This is a question I'm asking my endocrinologist when we chat. Why don't you ck with yours and let us know? Hopefully, someone who knows will be sending us a message giving us good information. I don't fully understand what Reclast does, how it works and why so differently. Also, there are different strengths for different folks and diseases. For me, this is getting into weeds I won't understand and I'm leaving it up to the docs I trust to know what, why, and when. That's their job. Mine is to do due diligence and make the decisions for my best.

Norma, be sure I'm not the poster child or poster 'old lady' for having Reclast infusions. Nope! I'm simply a pleased patient who's working closely with her healthcare team to get the most out of this body for the time I have to enjoy.

Keep us informed if you will. It's good to share. Elizabeth

I’m just beginning this journey in jax Mayo. Could you please share your dr’s name? I’ve been unable to get an appointment even though I am now on an AI inhibitor for breast cancer that causes osteoporosis. Cancer doc wants to put me on Recclast but I have kidney issues. thanks for any help.
Jas

I also have kidney issues. My endocrinologist is doing a 20% dose of Reclast. Another option is oral alendronate. I am finished with my cancer treatment with an AI.

Whether you do a bone med during cancer treatment really depends on your bone density now. Your doc can tell you based on your DEXA scan.

@sessioja, @windyshores, @normahorn, and all...Jas, I'm so sorry for your difficult journey. No fun with these health issues. Are you already a Mayo Jax patient? If so, your breast cancer doc can easily refer you if you discuss it openly with him/her. I'd try that first. I've had a lot of help from doctor to doctor working with me to get the team help they do so well.

I imagine you'll need a battery of bloodwork to ck your kidney functions, calcium, and other levels, etc. There are pretty strict parameters for the infusion to protect your other organs.

Keep us informed and let us know your progress. It's really special to help each other better deal with and understand our health issues. I don't think I'd have made it past the last years without my Connect friends, their support and guidance. Through their insights, I've learned acceptance of my health and body. I also have developed a strong sense of ownership of my treatments and care. I have choices. I make the choices. I decide how to proceed within the framework the doctors provide. It's a wonderful place to be.

Blessings, Elizabeth

What is an OP specialist?

Osteoporosis