Reclast Appointment Cancelled Morning of Appointment!

Posted by fiesty76 @fiesty76, Sep 30, 2020

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?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@lioness

@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

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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

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@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

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@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

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@contentandwell

@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

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Hello JK, @fiesty76 and @lioness, yes, for some who do have the unwanted side-effects, they can possibly remain until the drug clears the body and as you know, some of the bisphosphonates last 1 to 3 to 6 to 12 months!! I made a mistake when I said it was Alendronate (every 3 months) that can stay in the body for decades but it's Boniva aka Ibandronate. I have no idea how to find the conversation/s I said that in to correct that. Thanks for sharing, warm regards, Sunny PS: If any of you think of it, and know how I can correct my mistake, please let me know and/or please spread the word if you are comfortable doing that and find the right post. Thanks!!!!

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@sunnyflower

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

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@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

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@fourof5zs

@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

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@fourof5zs, Thanks for sharing your experiences, ZeeGee. I took both Fosomax and Forteo before starting Reclast and only now am I learning how very fortunate I was not to suffer side effects that others write about. I am going to be very slow in deciding what changes I will make to try to develop the best bone health I can going forward. I'm still overwhelmed by the Reclast cancellation and need some time to think through options and regroup. I appreciate the sharing this forum offers and am so glad to have a place where other experienced patients can share.

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@lioness

@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

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

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@sunnyflower

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

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@sunnyflower, Thanks for osteo specialist recommendation. I didn't know who to consult as a specialist for bone health.

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@fiesty76

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

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@fiesty76 Thanks I am not in as much pain as yesterday A friend said it might be change of season that was part of it .Might have been I remember years ago my stomach would act up in spring and fall .ButI do blame my dental problem on the Reclast from everything I have read. You where lucky not to have any side effects with all the problems you have especially kidney

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@lioness

@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

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Hello lioness, I am not going to Mayo so am wondering if it is the other Sunny you are thinking of? I wish I was!! By the way, I know that both Tramadol and Aleve can be harsh on the stomach. Are you taking them with food? I hope you are feeling better. Doesn't sound like much fun what you're going through. Warmest regards, Sunny flower

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@sunnyflower I'm sorry made mistake I think it was I feel much better today mopped kitchen @bathroom Maybe it was the change of seasons and hot weather yesterday who knows Yes I do eat when I take it I only combine them when I'm desperate to get relief .Take care of yourself

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