Reclast Appointment Cancelled Morning of Appointment!

Posted by fiesty76 @fiesty76, Sep 30 4:03pm

Very upsetting early phone call this morning…at 7:15 am from my clinic telling me that I was no longer "eligible for Reclast" and not to come in for the 9am appt. I was floored not only because the cancellation came so early in the morning but also because it had been a struggle with delays to get the appt. scheduled in the first place.

Didn't ask why the day of the appt I was just getting the call but had to wait until office opened at 8am to find out from P.A. assistant that because I'd completed my 5th yr on Reclast, I would have to go off it for a full year. Hadn't realized I'd been on it that long or that there was a definite cut-off period.

Asked what to do for bone density in the interim? (have been on many other osteo meds) and was told that request for Prolia would be sent for ins/Medicare approval before appt could be set. I range between stage 2 and 3 chronic kidney disease (ckd) am, prediabetic and diagnosed with chronic bronchitis. Had read some time ago about negative side effects of Prolia and now unsure about starting it without information from others. Need to do some online reading about it but still in shock and disappointed about the sudden cancelled appt.

Have others here had experience with Prolia and if so, how did you do or are you doing on it? The assistant said that while both annual Dexa and bloodwork would still be required, there was no cut off time once on Prolia and that the infusion is given every 6 months.

I'm wondering if I might ask to go back on one of the other meds prescribed in the past if Prolia sounds too risky. Hoping for some member experiences please?

@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

Liked by fiesty76

REPLY

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

REPLY
@sunnyflower

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

Jump to this post

@sunnyflower No apology necessary As you read I just had one Reclast infusion and at first I was fine but after a couple of months My teeth hurt and gum I lower I had them o.k. but do know what to do so I will get everything healed .I'm glad you wrote about teeth and your Dentist My bone scan is in July next year even if I see an improvement I will research this strontium I'm.already on the others boron included I take 3mg but may boost it to 6 mg . I'm glad you posted You have so much to contend with yourself it's nice of you to do whatever you can for others God bless you

REPLY
@lioness

@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

Jump to this post

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

REPLY

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.

REPLY
@dappy

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.

Jump to this post

Dexa scan NOT decaf!! Auto correct!!!

REPLY
@sunnyflower

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

Jump to this post

@lioness, & @sunnyflower, Sunny, I so regret your difficult situation and your candid, informative sharing of your experience. Like everything else, all of us are so different and what will work for one can spell serious trouble for another.

I was indeed fortunate 15-20? yrs ago when a fall resulted in 7 fractures but none required surgery. My orthopedist did not mention bone density tests at the time.

It was a few yrs later when I had a double tooth root canal that the endedontist? recommended a bone density scan. I did learn later of the concern that osteonecrosis of the jaw (ONJ) could occur with treatment of bone density meds. However, I opted to continue with bone density meds and have been lucky to have since had tooth surgeries, another root canal and most recently the removal of another tooth without any outward physical problems.

With multiple, serious health issues, it becomes the diliemma of where we can find ourselves between a rock and a hard place. Am I more concerned about my lung and effects of meds on other organs or on my heart meds which can also detrimentally affect other organs? Friendly foods on one diet for a malady aren't recommended for another.

The mentions of strontium and boron are both new to me so I need to learn more about both.

Whatever is ingested, whether otc or prescribed meds or fast foods vs organic carefully prepared foods will affect multiple body organs. The challenge for us the patients is to try to determine which will help or hurt most. Sometimes, I just want to throw up my hands in exasperation, toss out everything and load up on fast food chili cheese dogs and triple rich milk shakes. Sigh

Doctors don't usually have or take the time to thoroughly review our prescribed medical "cocktails" which leaves it to us struggling mortals to choose.

Thanks again, for your sharing and wishing us all the best, Sunny, going forward. Staying well and safe is a full time job, yes? Smiles

REPLY
@artscaping

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

Jump to this post

@artscaping, Not @lioness, but regret your painful side effects from taking Reclast, Chris. I had no side effects from Forteo but Tymlos is another med I'd not known about and need to research. Have been to orthopedist for bone fractures but he was a surgeon…would that be the specialist to visit as a specialist for bone meds or is there another?

Liked by sunnyflower

REPLY

@sunnyflower, @lioness, @artscaping,@dappy, I just found a few sites for bone med and specialist rec's that I thought others might find helpful. Healthlines is a site I've used sucessfully in the past because it gives a doc's credentials and also patient named reviews: https://www.healthgrades.com/right-care/osteoporosis/find-a-specialist-who-treats-osteoporosis ; https://americanbonehealth.org/bone-density/understanding-the-bone-density-t-score-and-z-score/ ; https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869 ; https://www.bones.nih.gov/health-info/bone/osteoporosis/find-doctor . Probably more than anyone would want to explore but think I'll be giving one of the highly patient recommended specialists in my city a call for appt. Best to all for a, gulp, Oct 1st already??? day.

REPLY
@dappy

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.

Jump to this post

@dappy, Thanks for your response. I was told that Prolia doesn't require a "vacation from it like Reclast" but can be continued indefinitely. I have no idea what to do and think docs don't always know all the answers either.

I listed some sites below that added more knowledge for me and think I'll probably seek opinion of a specialist before starting anything new for the bones.

The Am. Bone site offered some exercises I printed out and will begin doing…I am not a big fan of exercising on my own but after keeping to my goal of walking 3x/week for my "self-discipline challenge" for 2020 and succeeding so far, guess I can take on these exercises as well.

REPLY

@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

REPLY
@artscaping

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

Jump to this post

@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

REPLY
@fiesty76

@artscaping, Not @lioness, but regret your painful side effects from taking Reclast, Chris. I had no side effects from Forteo but Tymlos is another med I'd not known about and need to research. Have been to orthopedist for bone fractures but he was a surgeon…would that be the specialist to visit as a specialist for bone meds or is there another?

Jump to this post

Good morning @fiesty76, Tymlos is in the same category as Forteo. Forteo uses synthetic hormones to create the conditions for building bone and Tymlos uses natural hormones. (My words). Bit of a steal either way. I chose Tymlos because it doesn’t have to be refrigerated after you open the pen. You start with 18 months. Fortunately no side effects……My 18 months is up December 25. Then you have 2 years before you need to choose a bone saving maintenance medication.

I am a bit anxious about the lack of choices at this time because of my sensitivity to biosphonates. Because you completed Forteo, you may have to choose another bone saving offering.

May you be safe and protected from inner and outer harm.
Chris

REPLY
@fiesty76

@dappy, Thanks for your response. I was told that Prolia doesn't require a "vacation from it like Reclast" but can be continued indefinitely. I have no idea what to do and think docs don't always know all the answers either.

I listed some sites below that added more knowledge for me and think I'll probably seek opinion of a specialist before starting anything new for the bones.

The Am. Bone site offered some exercises I printed out and will begin doing…I am not a big fan of exercising on my own but after keeping to my goal of walking 3x/week for my "self-discipline challenge" for 2020 and succeeding so far, guess I can take on these exercises as well.

Jump to this post

Thanks for the information. I’m always looking for anything related to my bone health. So glad you are walking and exercising. I do some but certainly need to do better! Hopefully, I will!

Liked by fiesty76

REPLY
@dappy

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.

Jump to this post

Good morning Dappy! Wow, I hear you! It's a predictament for certain! I was remembering late last night, how years ago I got a toothache. They put me on an antibiotic and it kept getting worse. They changed the Abx and it still didn't improve so sent me to an endodontist for a root canal. I don't know why, but instead of injecting me in the usual place at the back of the mouth, he injected me right into the pus pocket of the infection! I was sliding out of the chair in pain! The next morning I was a STAT admit to the hospital for facial cellulitis. An oral surgeon did surgery on me, cleaning out the infection. I was in the hospital for 3 days. No fun! So one can have to have a tooth pulled just from an ordinary tooth infection that doesn't respond to Abx. I am mentally exhausted and losing a ton of sleep over this decision. I wish you all the best on your journey. I will uphold you in prayer too as you make your decision regarding what to do. Warmest regards, Sunnyflower

Liked by fiesty76

REPLY
Please login or register to post a reply.