Reclast Appointment Cancelled Morning of Appointment!

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

@fiesty76 I didn't know you where on Reclast I just started and am considering not getting any more Months before I had some dental problems and recessing gums Finally got them healed up had Reclast now a couple months later my teeth are hurting again and gums .I've read about bone necrosis in the teeth especially Not sure what I will do any advice

Good morning. I have been on Prolia for 4 years. Was due another 6 month injection in May but due to the COVID-19 I have not gone in to get it. I did have a decaf scan after the first 2 years and my osteoporosis had improved some but I wouldn’t say great. I just don’t know if I will take any more injections because I am almost 70 and my teeth are not in great shape and I know it’s not good if you had to have extensive dental work. I also have heard coming off Prolia is not good that you may get fractures. So are you suppose to stay in it forever?? My biggest complaint though is that I have developed hip pain and problems with walking sometimes because of pain. They haven’t found a reason but they say they don’t think it’s the Prolia. But how do they know??? I just pray and trust God.
I hope you make the right decision.

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

Hello @lioness. Good evening. I just noticed that you have reported a reaction/side effect to Reclast. That is the same reaction I have to all bisphosphonates. I was on a monthly protocol. Within 24 hours I would have such pain in my jaw that I wanted to pull all my teeth out. Very uncomfortable and disturbing. Tried for 4 months.....it also left me with pain in my ribs, sternum, jaw, eye sockets....facial bones. I was given two choices by my endocrinologist. Tymlos and maybe Forteo. I chose Tymlos and no side effects....have 3 months to go.

May you be free of suffering and the causes of suffering.
Chris

Good morning. I have been on Prolia for 4 years. Was due another 6 month injection in May but due to the COVID-19 I have not gone in to get it. I did have a decaf scan after the first 2 years and my osteoporosis had improved some but I wouldn’t say great. I just don’t know if I will take any more injections because I am almost 70 and my teeth are not in great shape and I know it’s not good if you had to have extensive dental work. I also have heard coming off Prolia is not good that you may get fractures. So are you suppose to stay in it forever?? My biggest complaint though is that I have developed hip pain and problems with walking sometimes because of pain. They haven’t found a reason but they say they don’t think it’s the Prolia. But how do they know??? I just pray and trust God.
I hope you make the right decision.