Reclast Appointment Cancelled Morning of Appointment!

@sunnyflower Thank you so much I really appreciate your concern .May God be with you and always. Your a wonderful women so caring for everyone on here

Hello lioness and @fiesty76. I have posted this info recently so please forgive the repeat. I've had severe osteoporosis for about 5 years. 3 broken pelvic bones, one rib and other smaller bone freactures. My Endocrinologists have been trying to talk me into taking meds, specifically bisphosphonates, for years. I have been doing a lot of research on them. I can't bring myself to take them b/c of the potential side-effects. Some serious: femur fractures, femur tumor, acute kidney failure and the list goes on and on. The not so serious side-effects can potentially be "severe/debilitation" joint/muscle/bone pain and/or flu-like symptoms, stomach pain, and the list goes on and on! I know they say they are rare, but I've already had some organs and glands harmed from my current meds. And, I've had some awful side-effects. I also already have 3 rare diseases so when they say rare, that doesn't comfort me. When I was at my dentist office last week, I told her my situation and that I was considering taking bisphosphonated. She told me some info about bisphosphonates that scared me. She said that Alendronate which only lasts 3 months, stays in your body for "decades"! This was the one my Endo wanted me to try to see if I could tolerate bisphosphonates b/c it is the shortest acting bisphosphonate. She said that once someone has 3 injections of Reclast, which is the one my Endo wants me to take, that should they need a tooth pulled, no one on the planet will do it. She explained that osteonecrosis of the jaw (ONJ), one of the potential side-effects, is very serious and can occur with any invasive dental work like a tooth being pulled. She said that there would be no blood flow to heal the bone after the tooth was pulled. They must treat the problem a different way but it all sounded serious. This dentis is at a specialty dental group. I was sent there by my long-time dentist whom I loved b/c, and I quote, "I do not have the extra training required to care for a patient as complicated as you". I cried for 2 days. It's my disconnect about being ill. Anyway, she set me up with this dental group who see very sick patients who even fly in from out of state. When my husband and I looked into them, we didn't even recognize the degrees they had! Quite impressive! I thought all dentists had medical degrees but they don't! "Dental degrees are DDS and DMD. A DMD is not an MD". So, either way it's a no-win for me. I'm just stunned and confused and feel trapped. I mean w/ this osteoporosis you can break a bone coughing or turning over in bed! We are not supposed to bend or twist. It's impossible not to! Ug. I just pray a lot believe me! I do not mean to alarm or confuse or discourage anyone. I just felt that when this info came my way that I had a moral obligation to share it. I hate being the bearer of bad news! So far, as my dentist explained, there is no medication for osteoporosis that does both functions of the bone: "Osteoclasts are responsible for aged bone resorption and osteoblasts are responsible for new bone formation". Hopefully there will be some day. Again, I apologize for being the bearer of this troubling information. I pray for you and wish all the best for absolutely everyone who is in this situation. I think there are success stories and I pray that for all of you! I care deeply for all of you. Please accept my heartelt warmest wishes for your well-being, Sunnyflower

@sunnyflower What my hygienist told me, and I am quite sure she had been told this by the dentist, was that the problems last as long as the drug. For instance, if you are taking Reclast you can't have surgery until the year is over. If you are taking a shorter-lived drug then you don't have to wait as long.
I can't swear to all of that, but that is what I was told and it is a pretty good practice.
JK

Thank you lioness, what a sweet, sweet thing to say!!! I do care very deeply for all of you. I just wish I could take away everyone's pain! We all think each other suffer more than ourselves. What a funny thing. Each person walks through many hot fires here in this lifetime. I had a wonderful therapist who told me not to think that way, that it is counter-productive. I try but can't help feeling like others are worse off then myself. Too much into my head I guess. It's good though b/c it helps me pray. How is your fibro and neuro pain now? Any better? Oh I pray so!!!!! Both those pains are pretty brutal. My fibro is every cell and my neuro is head to toe. Is your neuropathy pain all over your body too? I hope not. Just the feet are bad enough! Take care and warm hugs, Sunny

@fiesty76
I have taken fosamax, another one I cannot remember the name of orally and my stomach could not handle them so went to Reclast. I have forgotten how many treatments I had.

I have officially osteopenia, but because I have had a compression fracture in my back.. simply on my knees in the kitchen reaching for one of those rarely used pieces of cookware at the back of the cabinet and did the damage.. I am treated as if I have osteoporosis.

I have a bone scan every two years... once I went 4 years because of my upper abdomen problems taking precedent. I was on the break from Reclast at the time.. not sure how long the break was suppose to be. Other than having trouble every time getting the IV in for the infusion I had no problems with it.

I did Prolia I think in either late 2017 or early 2018. Within a couple of hours my stomach hurt.. like a stomach ulcer. I actually called the Mayo Clinic to let my team know and asked what I should do. I had started taking Mylanta on my own and they told me to continue that and to call back if I got worse or no better. I was better after a couple of weeks of that. I am like.. this is an injection how can it hurt my stomach. When I took the Prolia I was told no one had ever had a reaction to it. I read of many who have now, but at the time I had Prolia I had not. There are many trials on such drugs, but the real trial is when it is released into the public. Everyone is different even though our systems work basically the same way.. we react differently.

Last fall I was suppose to meet with an NP and discuss another plan, but that morning my mama .. who lived with us.. had a stroke; I canceled the appointment and I never rescheduled. I was given a printout of a summary chart of my treatments and scan results a few weeks before by an NP at my yearly pelvic exam. There was really no improvement with any of the treatments and no real changes in the scan numbers. I think in my case.. for now at least.. is to just try and eat nutritiously, take my mult-vitamin, vitamin d, and b-12 injection and exercise.

I take generic Pilosec for my stomach and esophagus problems. PPIs are not very good for the bones, but it is a damned if I do and damned if I don't situation. sigh.

ZeeGee

@artscaping Thanks for the reply I'm in enough pain I really don't want to cause anymore It's a bad day the one thing I don't know is my pain from fibro as it's all over include nerves or neuropathy All I know is I'm in pain today My girlfriend was on Forteo almost lost her teeth pain in her jaw , she finally went of all of the bone meds .Thanks for your information Chris

Hello fiesey76, @artscaping @lioness, That I know of, after working in healthcare for more than 20 years, and from my own experiences, It is is Endocrinologists who manage osteoporosis. Take care, Sunnyflower

@lioness, Well, whatever the cause, I'm hoping your pain has eased and that you are feeling better, Linda.

@sunnyflower Thank you for your words. Im feeling much better now . Yes my nerves where worst in my hands ,arms my feet are only cold but I also have the hot/cold flashes . Its so hard to tell which it was today . Fibro and Neuropathy symptoms are same with the nerves and muscles even when I took my Tramadol and Aleve which always gives me relieve it wasn't till it got cooler here so I wonder if it was the hot temps or change of season,s . I know my stomach always hurt during the change of seasons. But lots of questions for the Dr. Monday . I know you are excited to go Sun to Mayo. Im glad for you . Blessing to you sunny