Going from Prolia to Reclast timing

Posted by neesie0159 @neesie0159, Feb 18 10:20am

Hi, I am scheduled to have my 4th and last Prolia injection in 2 weeks ( 3 of 4 of these have been a nightmare to arrange between my provider not sending an order or incorrectly requesting prior authorization, the infusion center giving misinformation, etc). My endocrinologist told me to start Reclast a few months after the last Prolia, and everything I read says anywhere from 4-8 months. I plan to ask him (which is another challenge) but wondering if anyone else has done that timeline.
Right now I am traumatized from the repeated hassle of scheduling the latest Prolia, I was told they only have Jubbonti, which my insurance website says is not covered. Then told by someone else there that they do have it, then today that they can give it but the pharmacy has to order it.
I would love to wait longer than a few months before having to go through this mess again for the next med.

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

Just saying! You! Are the one in control of your own body! Others can suggest, but it is you to decide what,when and why! Secondly, Please review Reclast side effects before you decide to have it done! There are some that share about prior preparation and the benefits! I personally had the Reclast infusion and simply will not have another! It has been 20 months and I’m constantly dealing with the side effects! Shoulders, left foot, nausea at times. Most days I try my best to be upbeat and feel I will beat this; the down days…..suck! Some say longer time receiving the infusion, hydration two days prior and Tylenol help; did not for me! I’m a 69 year old Male, I have a lot of things to finish in my life. My endocrinologist want me to have another infusion, says the Reclast did not cause these issues, been to Rheumatologist, neurologist…no one can explain my problem. From here on out, I’m remaining in 100% control! Good luck!

REPLY
Profile picture for dannyandebbie @dannyandebbie

Just saying! You! Are the one in control of your own body! Others can suggest, but it is you to decide what,when and why! Secondly, Please review Reclast side effects before you decide to have it done! There are some that share about prior preparation and the benefits! I personally had the Reclast infusion and simply will not have another! It has been 20 months and I’m constantly dealing with the side effects! Shoulders, left foot, nausea at times. Most days I try my best to be upbeat and feel I will beat this; the down days…..suck! Some say longer time receiving the infusion, hydration two days prior and Tylenol help; did not for me! I’m a 69 year old Male, I have a lot of things to finish in my life. My endocrinologist want me to have another infusion, says the Reclast did not cause these issues, been to Rheumatologist, neurologist…no one can explain my problem. From here on out, I’m remaining in 100% control! Good luck!

Jump to this post

@dannyandebbie I’m so sorry Reclast was a bad experience for you. I’ve read many, many comments here about it and potential side effects. I already have had 5 vertebral fractures over the past 20 years, I can not risk getting more due to rebound from quitting Prolia, and at 67 I don’t want to be on Prolia another 15+ years. So, I have to do something, and oral meds like Fosamax apparently don’t help as well to prevent rebound bone loss. It’s a matter of which risk I am willing to take.

REPLY
Profile picture for neesie0159 @neesie0159

@dannyandebbie I’m so sorry Reclast was a bad experience for you. I’ve read many, many comments here about it and potential side effects. I already have had 5 vertebral fractures over the past 20 years, I can not risk getting more due to rebound from quitting Prolia, and at 67 I don’t want to be on Prolia another 15+ years. So, I have to do something, and oral meds like Fosamax apparently don’t help as well to prevent rebound bone loss. It’s a matter of which risk I am willing to take.

Jump to this post

@neesie0159 lots of good luck for a positive outcome!

REPLY

HI, I just had my first Reclast infusion today, about 5 hours ago. I was on Prolia for 11 years and doing very well on it. My spine went from -4.1 T score at age 42 to -2.0 T score age 52. Hips went from -1.8 to -.8. However, I was due for my next Prolia shot in January only to be told that insurance is denying it. They are saying my dexa score of -2.0 T score at age 52 is too high and that I need to try something else. Appeal was denied. So my provider is having me try Reclast in order to mitigate the effects of going off Prolia after 11 years. My Prolia shot was due on January 28th, so I was without anything from that point until today, March 2nd, about five weeks past my due date for Prolia. I was told that Prolia starts to leave your body noticeably around 8 months after the last shot (my last shot was in July 2025), and she did not want me to wait past that point, which for me would be the end of March as the risk of rebound would become much higher. So far I have only had one strange effect that I notice since my Reclast infusion five hours ago, a canker sore on my upper lip. That could be a coincidence that it started just a few hours ago. Who knows. Its not terrible, just not something I have experienced in a very long time. I was also stressed going in because its the same infusion center my deceased husband had two years worth of chemotherapy at. The memories were hard and that to me was almost worse than the any problems I might have with the infusion.

I have no aching, no fever, no fatigue. The infusion itself went very well. But time will tell. Like you I did not want to take chances with multiple rebound fractures so I was and am willing to deal with any side effects of Reclast. I have only ever had stress fractures in feet and legs (not from osteoporosis but from ballet training) and that was painful enough! I witnessed my mother suffer from several compression fractures in spine and she also has dementia and she was in the hospital with horrific pain and is now hunched over and lost over five inches height. I do NOT want to experience that if I can do anything to help it! I lost my ovaries at a young age of 33, have been on thyroid meds since I was 16, and was anorexic for six years in my forties, severely so. I am weight restored but still on the lower end of normal range. I have so many risk factors, but I am also very active. I took care of my husband who had end stage lung disease, had a double lung transplant, then had metastatic lung cancer. I saw him to the end. Now I am going to be taking care of my Dad. I can not afford to be crippled if I can help it! I own a house and its a lot of work plus working full time. Its frustrating when so many factors keep you from getting what you need! I am so mad at my insurance. Ugh. But I also understand there is really no science or evidence of long term benefit with Prolia past ten years and it IS a very expensive drug. I also understand most say these bisphosphonates can only be taken safely up to ten years. That leaves me with a whole lot of years to consider after. At least with the bisphosphonates they stay in your bones a long time so its not life and death if you suddenly find you cant get a dose for reasons out of your control such as insurance or incompetent doctors. I'm trying to see the positive in this though this last month has been an absolute nightmare stressing out on what comes next. I'm really sorry you are going through this too! I will say I took one tylenol 500mg last night, another last morning, then after the infusion another one a few hours later. I also made sure to stay very well hydrated last night and all day today. I don't know if that made a difference? My infusion lasted a full fifteen minutes. I was given sodium chloride running concurrently with the infusion. I hope everything works out for you!

REPLY

I guess I spoke too soon. Woke up around 1:30am with muscle aches, fever, chill. This morning tried to get ready for work and had just a little toast which caused a lot of diarrhea and vomiting/nausea. My appetite is completely gone. Why I tried to eat is beyond me. Fatigue is crazy! I ended up calling in and went back to bed. Been taking tylenol around the clock but its not doing much now. Hopefully this doesn't last too long! My head is very hot and feels heavy. Swelling of upper lip went down but not gone. Heart rate is a little fast but not alarmingly so. I had cramps earlier all over torso but once I emptied myself both ways in bathroom those went down. I'm watching for rash and other signs of allergic reaction but nothing yet. Now back to bed.

REPLY

My understanding is Reclast should be taken 4-6 months after your last Prolia injection to avoid the rebound effect. It may help to watch Michael Lavacot's You tube videos. He has one specifically on Prolia. Dr. Janet Rubin's videos are informative as well. Good luck.

REPLY
Profile picture for teardrop @teardrop

I guess I spoke too soon. Woke up around 1:30am with muscle aches, fever, chill. This morning tried to get ready for work and had just a little toast which caused a lot of diarrhea and vomiting/nausea. My appetite is completely gone. Why I tried to eat is beyond me. Fatigue is crazy! I ended up calling in and went back to bed. Been taking tylenol around the clock but its not doing much now. Hopefully this doesn't last too long! My head is very hot and feels heavy. Swelling of upper lip went down but not gone. Heart rate is a little fast but not alarmingly so. I had cramps earlier all over torso but once I emptied myself both ways in bathroom those went down. I'm watching for rash and other signs of allergic reaction but nothing yet. Now back to bed.

Jump to this post

@teardrop hope you are feeling better by now as I see you posted 22 hours ago! I also hope you are not like me! I’m told that I am one in a million for having continuous symptoms from my Reclast infusion; over 20 months ago! The nausea and fatigue did go away for months only to return. There are days I have all that I can do to get around. Thankfully I have two K9’s that require my attention a lot throughout the day which helps me push along. Hopefully you have good news and are feeling 100% better by now! Best of luck!

REPLY
Profile picture for dannyandebbie @dannyandebbie

@teardrop hope you are feeling better by now as I see you posted 22 hours ago! I also hope you are not like me! I’m told that I am one in a million for having continuous symptoms from my Reclast infusion; over 20 months ago! The nausea and fatigue did go away for months only to return. There are days I have all that I can do to get around. Thankfully I have two K9’s that require my attention a lot throughout the day which helps me push along. Hopefully you have good news and are feeling 100% better by now! Best of luck!

Jump to this post

@dannyandebbie Oh no! That sounds awful! I am feeling somewhat better. I still have no appetite at all and still have muscle aches and slight nausea but the fever, chill, swollen lip etc went away. I am back to work (had to miss yesterday and curled up with a heating pad in bed all day) but its a struggle. I was told it could take up to 72 hours to resolve. If I have any more of these I will have to schedule time off work the days after! I am very sensitive to many drugs. The very first covid vaccine hit me this hard too and I was out for 3 days.

REPLY

Broke out in hives on face and neck this afternoon. At the same time, I had a violent chill out of the blue. My face got very hot but I was freezing. I took 2 Tylenol and laid down for an hour. Feeling better. Hives went away but my face is still hot. I've had hives before but not with drugs. Messaging my doctor tomorrow.

REPLY
Profile picture for teardrop @teardrop

@dannyandebbie Oh no! That sounds awful! I am feeling somewhat better. I still have no appetite at all and still have muscle aches and slight nausea but the fever, chill, swollen lip etc went away. I am back to work (had to miss yesterday and curled up with a heating pad in bed all day) but its a struggle. I was told it could take up to 72 hours to resolve. If I have any more of these I will have to schedule time off work the days after! I am very sensitive to many drugs. The very first covid vaccine hit me this hard too and I was out for 3 days.

Jump to this post

@teardrop hopefully each day is an improvement

REPLY
Please sign in or register to post a reply.