Reclast pro and con

Posted by hedynevada01 @hedynevada01, May 1 4:34pm

I am terrified to try reclast. It appears that so far about 45% of reviews I have read are awful. If I take it I am stuck for a year with possible terrible side effect.

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@misst1970

I recently finished my two years on Tymlos and went through a lot of debating on next steps for after. My doc recommends Reclast as the best option to lock in and hold the gains I've made. My spine density increased 16% with Tymlos and I want to make sure I don't lose all the gains I made so am moving forward with the infusion on May 14. I have read many of the horror stories and it's terrifying as I know if I am in the small percentage with the long term side effects I'm stuck for a while. I did talk pretty in depth with my bone doc about it, as well as a PhD that oversees many of the studies on the drugs. The future plan is currently three annual Reclast infusions and then I will have several years off of all drugs with testing bone markers to know when it's time to start another step. As an alternative I could consider a weekly Fosomax dose for five years instead, but it doesn't seem to hold the gains quite as well as Reclast. My mom was diagnosed young as well and has broken 16 bones, so, to me, the risks are hopefully worth the rewards. Of the four individuals I know personally that have done the Reclast infusion, none of them had issues beyond the first two weeks post infusion (two had flu like symptoms for a few days, one had no side effects and one had bone pain off an on for the first two weeks). My doc did note that he would be more hesitant if I had underlying conditions, particularly any autoimmune issues, calcium or kidney issues (He did require additional testing before determining whether he thought I was a good candidate for it or not). I certainly don't dismiss those that have had the terrible long term reactions (it terrifies me and has kept me from booking the infusion for several weeks), but I know not taking meds isn't an option for me. As my mom was diagnosed young, I have always been obsessive about exercising properly and ensuring plenty of Calcium and Vitamin D as I really didn't want the osteoporosis future. At 51 I got a DEXA scan and was, unfortunately, already well into Osteoporosis (-3.5 spine average). My doc noted genetics are a bitch. My sister was diagnosed at 49 with osteoporosis as well. I am very active - ski, hike miles every day, do martial arts, eat healthy, etc and I want to ensure I can continue to do all the activities I enjoy well into my old age. I was terrified to start Tymlos, but I had no issues and got some nice gains that I want to keep. I would note that if you read the reviews of all these drugs, almost all of them are negative. I kept putting off making a next step decision based on reading everything on these forums, but finally decided to trust my doc and his recommendations as doing nothing is a no go. I did specifically ask how many cases he has personally seen with long term issues on Reclast and he noted in the thousands of patients he has treated at least 20% had issues in the first two weeks, but that he'd only had two patients with more severe long term reactions to the medications (he also said both had additional underlying conditions). I asked if he ever recommended it to his mom (I know from our initial meeting that was one of the reasons he went into this speciality years ago), he noted he did indeed, that she had several Reclast infusions as part of her treatment protocol and experienced mild flu symptoms the first one and very few on the other two). I also talked to the PhD who oversees the clinical trials for osteoporosis drugs and she also recommended Reclast as the best option to lock in the gains (and had taken it herself in a similar situation). I know it's a risk and that I could be one of the minority with the long term issues (I am usually sensitive to medications), but I know there are long term issues with broken bones and compression fractures so here I go taking the plunge! My infusion is in 10 days, I was terrified to schedule it but a certain amount of relief to have a decision made for next step. I will make sure I'm well hydrated, will be taking tylenol day before, day of and day after and I scheduled the longer 60 minute infusion rather than having it completed over 15 minutes (all the items recommended to reduce side effects). Hopefully I'm not one that has an allergic reaction to it (fingers crossed). I'll follow up post infusion recovery and "hopefully" I'll be able to share a positive result.

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I've been on reclast for 3 years with no side effects at all. My bone density went from osteoporosis to osteopenia. It's a work in progress.

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I had several side effects that increased each year. Had to come off of it. I now take exercise classes from someone certified to work with people with osteoporosis. Good luck to you.

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@2024tymloshelp

I too am very concerned about possibly doing Reclast after I am
done with Tymlos.
I’m going to have to choose something so I don’t lose any gains in bone from Tymlos.
Question:
Remember the drug boniva?
My mother took it for years and says she had no side effects.
I heard there’s a generic version still available.
Why is no one talking about it as a bisphosphonate to take ?
And is Evista ( which my mother is on now and no side effects)
The end of the line bone drug saved for people in their 80’s ? Or can
Someone take it in their 60’s ?

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I still have not decided. I need to get quite a lot of tooth work. I had a terrible dentist who actually did much damage. I have founf o good dentist through friends. If she take my insurance it would be great. I’d she does not well the dentist whi did take my insurance was a hack. I had a violent reaction those #4 covid shot in May of 22 and had nerve damage and was unbalanced so walk much for until recently so that it what put my dexa scan at -3

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I am 80, with osteoporosis in my hip- took Reclast last November 8 because my insurance would not ok Prolia- side effects have been terrible, including extreme fatigue, swelling of wrists, hands, fingers, feet, ankles, anemia, weakness. I will not take again, no matter how much it helped, which I won’t know till my next Dexa scan.

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@sheikyerbooty

I've been on reclast for 3 years with no side effects at all. My bone density went from osteoporosis to osteopenia. It's a work in progress.

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I wish you the very best as you start Reclast.

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My best wishes for you as you start Reclast.

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@misst1970

Tymlos is a daily injection. It's an anabolic bone building drug very similar to Forteo. It can be taken for up to to two years. There are three anabolics: Tymlos, Forteo and Evenity. Evenity is a monthly infusion and can be taken for up to one year. Tymlos and Forteo are daily injections (with a "pen", pretty easy to do). I wanted to build up my bone density before "maintaining", hence the anabolic first. They aren't as effective if you've been on Reclast or another bisphosphonate already (since bisphosphonates "coat" the bones the anabolic's don't work as well, but can still increase the density). Reclast is a strong bisphosphonate. Other bisphosphonates include Fosomax (Aledronate), Boniva, Etc. Another option is a Prolia shot every six months, it's very good at keeping individuals from fracturing UNTIL you need to come off of it (like all they eventually cause issues with long term continuous usage) - they have not yet found a safe way to stop taking it without experiencing a huge drop in density and likely fractures. I won't take Prolia until they find a way to come off of it safely or until I"m in my 80's when I am not as concerned with long term usage of it (I'm only 54 currently so it's a ways off). I did two years of Tymlos to build up my bone density before switching to a maintenance drug, now will do a reclast infusion to "lock in the gains" I've made on Tymlos - the current plan is reclast infusions for 3 years and then likely 4-5 years of no drugs until they see my bones starting to decline again (since bisphosphonates build up and stay in the system) and not yet known for beyond that, but hopefully there will be some new options by then!

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Thanks for the explanation! You have given me more information from my PCP who, in the second sentence after he told me i have osteoporosis wanted to put me on alendronate. I am waiting for my July appointment with an endocrinologist before i make any decisions about medication. Was diagnosed with a -3.2 for my spine. -2.1 for my hips.

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@misst1970

I recently finished my two years on Tymlos and went through a lot of debating on next steps for after. My doc recommends Reclast as the best option to lock in and hold the gains I've made. My spine density increased 16% with Tymlos and I want to make sure I don't lose all the gains I made so am moving forward with the infusion on May 14. I have read many of the horror stories and it's terrifying as I know if I am in the small percentage with the long term side effects I'm stuck for a while. I did talk pretty in depth with my bone doc about it, as well as a PhD that oversees many of the studies on the drugs. The future plan is currently three annual Reclast infusions and then I will have several years off of all drugs with testing bone markers to know when it's time to start another step. As an alternative I could consider a weekly Fosomax dose for five years instead, but it doesn't seem to hold the gains quite as well as Reclast. My mom was diagnosed young as well and has broken 16 bones, so, to me, the risks are hopefully worth the rewards. Of the four individuals I know personally that have done the Reclast infusion, none of them had issues beyond the first two weeks post infusion (two had flu like symptoms for a few days, one had no side effects and one had bone pain off an on for the first two weeks). My doc did note that he would be more hesitant if I had underlying conditions, particularly any autoimmune issues, calcium or kidney issues (He did require additional testing before determining whether he thought I was a good candidate for it or not). I certainly don't dismiss those that have had the terrible long term reactions (it terrifies me and has kept me from booking the infusion for several weeks), but I know not taking meds isn't an option for me. As my mom was diagnosed young, I have always been obsessive about exercising properly and ensuring plenty of Calcium and Vitamin D as I really didn't want the osteoporosis future. At 51 I got a DEXA scan and was, unfortunately, already well into Osteoporosis (-3.5 spine average). My doc noted genetics are a bitch. My sister was diagnosed at 49 with osteoporosis as well. I am very active - ski, hike miles every day, do martial arts, eat healthy, etc and I want to ensure I can continue to do all the activities I enjoy well into my old age. I was terrified to start Tymlos, but I had no issues and got some nice gains that I want to keep. I would note that if you read the reviews of all these drugs, almost all of them are negative. I kept putting off making a next step decision based on reading everything on these forums, but finally decided to trust my doc and his recommendations as doing nothing is a no go. I did specifically ask how many cases he has personally seen with long term issues on Reclast and he noted in the thousands of patients he has treated at least 20% had issues in the first two weeks, but that he'd only had two patients with more severe long term reactions to the medications (he also said both had additional underlying conditions). I asked if he ever recommended it to his mom (I know from our initial meeting that was one of the reasons he went into this speciality years ago), he noted he did indeed, that she had several Reclast infusions as part of her treatment protocol and experienced mild flu symptoms the first one and very few on the other two). I also talked to the PhD who oversees the clinical trials for osteoporosis drugs and she also recommended Reclast as the best option to lock in the gains (and had taken it herself in a similar situation). I know it's a risk and that I could be one of the minority with the long term issues (I am usually sensitive to medications), but I know there are long term issues with broken bones and compression fractures so here I go taking the plunge! My infusion is in 10 days, I was terrified to schedule it but a certain amount of relief to have a decision made for next step. I will make sure I'm well hydrated, will be taking tylenol day before, day of and day after and I scheduled the longer 60 minute infusion rather than having it completed over 15 minutes (all the items recommended to reduce side effects). Hopefully I'm not one that has an allergic reaction to it (fingers crossed). I'll follow up post infusion recovery and "hopefully" I'll be able to share a positive result.

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Good luck to you! Keep us updated after your infusion. Sending positive thoughts

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@shelldct1

Thanks for the explanation! You have given me more information from my PCP who, in the second sentence after he told me i have osteoporosis wanted to put me on alendronate. I am waiting for my July appointment with an endocrinologist before i make any decisions about medication. Was diagnosed with a -3.2 for my spine. -2.1 for my hips.

Jump to this post

I had a similar experience. The general doc who called me with the DEXA results simply sent in a prescription for Fosomax (Aledronate). I declined and noted I wanted to see a specialist since I was aware the order you take the drugs in is important, they are all limited on how long you can take them, and I knew I would be in this for the long haul (since diagnosed at 51, I figured I'm looking at 40 years of treatment to help keep me from fracturing!). It delayed me starting on anything for several months, but I felt it was worth it (had I started on the aledronate then gone onto Tymlos it is known to not be as effective post bisphosphonate). My spine and hips were worse than yours at time of initial diagnosis. Hope your appointment in July goes well, it's worth discussing a long term plan with a specialist!

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@misst1970

I had a similar experience. The general doc who called me with the DEXA results simply sent in a prescription for Fosomax (Aledronate). I declined and noted I wanted to see a specialist since I was aware the order you take the drugs in is important, they are all limited on how long you can take them, and I knew I would be in this for the long haul (since diagnosed at 51, I figured I'm looking at 40 years of treatment to help keep me from fracturing!). It delayed me starting on anything for several months, but I felt it was worth it (had I started on the aledronate then gone onto Tymlos it is known to not be as effective post bisphosphonate). My spine and hips were worse than yours at time of initial diagnosis. Hope your appointment in July goes well, it's worth discussing a long term plan with a specialist!

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May I ask what your DEXA results were that prompted the decision for you to start Fosomax.

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