Reclast pro and con

Posted by hedynevada01 @hedynevada01, 3 days ago

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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@babby

I took Re-Clast 3/24/25 and had a horrible experience for two weeks which I have commented on. I can tell you I seem to have weathered the initial storm and am currently not experiencing side effects. I am hoping this continues. If I remain without the pain for the next year, I probably will do one more that my doctor wants me to. In the meantime, do bone strengthening exercises, eat healthy, take calcium and vitamin D as instructed by your physician. Here is my previous comment: "I am 73 and I received my first infusion of Reclast on Mar. 24, 2025. I..."+ (show)
I had a Reclast Infusion 3/24/25 and I have been feeling poorly since and today is 4/13. I got the pain in the left eyeball and thought my head was going to explode the day after infusion. I too saw eye doc and he did not see that I needed steroid drops. The pain finally subsided but it went to back of neck & shoulder . Then it went from there after 3 days into my right jaw where I had teeth removed (I was on Prolia and used oral surgeon one year before). It has subsided after 3 days. I’m better today but still feel crummy. Pain has subsided🤞I am a long term chronic pain patient on pain meds as well. I will tell you I had to use six Tylenol 500 mg each for two days and least two 500 mg since the infusion with normal pain meds. This morning I woke up headache free and yesterday. I’m hoping I can do a little housework starting tomorrow. This will be 12 days in bed mostly for me. I suffered agonizing bone pain with Prolia (4 shots over 2 yrs. Pain started last year so I refused to take. Due to fracture risk they put me on this and I’m reluctant to do it again) Prolia about killed me last year. I couldn’t bend over to pick something off floor and woke up in morning not knowing if I could get up in so much pain. I really thought I was going to die (it was so bad). I couldn’t walk. I missed Christmas and New Years with family. Too much pain. I am hoping to feel better, but I can’t hold my breath. I’ll update in a few days. These drugs are powerful and I wish I had never heard of them. Now I’m stuck because I have spondylitis, severe scoliosis and no space disc in back. Oh and I want to mention my hands hurt so bad I couldn’t cook for several days. It’s been hell for me. Think twice before you do these drugs. It’s a lifetime you have to continue.”

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I’m so sorry! These drugs are much more potent than anyone actually explains to you. I kept hearing how Reclast is so easy and you have flu like symptoms for a couple of days. Not true!
I too felt like I was going to die. And so did my family.
I had infusion 12/2024 and I still have some lasting effects and it’s six months.
I’m at least able to function at 80 % now. Still lightheaded and heart races. But I’m slowly getting there.
The toll it takes on your mental health is so important to mention. Sending prayers your way.

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@reclastsuferer

If people get upset about you sharing your experience so be it!
You should educate yourself about this drug before committing to it
I didn’t and I will regret it for the rest of my life
How do you know if you are not going to tolerate it
It is a risk that is NOT worth taking
I am two months after Reclast with lots of pain , seeing doctor after doctor and the last one a pain management one” we do not treat pain caused by a medication “ you have to let your body adjust to the new situation!!
In the mean mean time I am miserable

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I will never stop sharing my experience. Thank you

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@drsuefowler

I'm so sorry to hear about your severe reaction to Forteo @psanchez33617. I am in my 5th month of Foreo and have very painful, swollen calves, but they don't look as bad as yours do. The veins behind my knees are swollen and painful. I was on a half dose of Tymlos before Forteo and may go back to that. I don't seem to be able to tolerate any full dose medications. After breaking 5 bones in 18 months, I thought I'd give medication a try.

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@dsuefowler it surely is a case of damned if you do and damned if you dont and broken bones are not at all fun. We could share stories on that, I am sure. I guess it all boils down to risk vs benefit but for some of us there is a high degree of risk and not as much benefit. Where are the comments from the people that have had good experiences with these drugs? I do know that there has to be some, but not in my world. Forteo only stays in your system for a short time, thus the need for daily injections. It is why I consented to try it. My doc wants to pursue other options but I cant imagine what it would be like to have a reaction to a drug that stays in your system for a long period of time. For now, I will take my chances with alternative methods, diet, exercise and focus on being as strong as I can.
When you were taking a half dose of Tymlos, why did you switch to Forteo?

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@gently

psanchez33617, this is terrible. If you are in the mood, would your tell us more. I'd like to know if this appeared suddenly or overnight. If you had any warning. If your doctors think you are allergic to pth or another excipient in the Forteo.
I've heard of people having lower leg swelling. Yours looks like a bloody swollen mess . And you've tried other medications and had adverse reaction. Nightmare, indeed. Was it painful of itchy. What happened with the other meds?
You may not want to tell more, thanks for posting this and the photo.
Best luck with Fortibone.

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Hi @gently
I am one of those people that do not get along with many pharmaceuticals. I got the Covid vaccine and almost died, my immune system tanked and I left the planet for 3 days. Unfortunately, I have countless experiences I could share, many of them efforts to increase bone. I was diagnosed with osteopenia at the age of 39 and am now 73. Back then, not much was known about osteoporosis drugs and the options were limited. After having reactions to a few of them, I went on hormone replacement therapy. Then, in the 90's they said that HRT caused uterine and breast cancer so I bailed on that and just maintained on a healthy diet and throwing weights around in the gym. Seemed to make the bone loss only gradual until about 5-6 years ago when my scores became terrible and I broke my back. I tried a few oral meds and felt like they were eating the inner lining of my digestive system. Then, I broke my back again so I got serious about being hopeful that there was something out there for me. Forteo proved that wrong. After that reaction, I wanted to try again since I knew how the reaction behaved. So, after the reaction cleared up, I shot myself for another 5 days before the monster re-appeared, this time in my upper body and throat. The minute it re-appeared, I swallowed steroids and antihistamines and headed back to the endo to see what was next. Tymlos was on that list but is very similar to Forteo so my doc said a reaction with it could be extremely serious and did not think it would be a good decision.
I am getting my hormones tested and most likely going to start HRT again. Testosterone is pretty interesting in the role that it plays in bone building so let's see what happens. I do not feel as frail as I did when I fractured multiple times so I am back to body weight exercises with hopes of grabbing heavier things at some point. Hoping that I do not start my period again (that would be something) or grow a beard.

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@gently

hedynevada01,
I feel the same way you do about Reclast. But if you did decide to risk it, there are ways to protect yourself. It is known that 4mg works just as well as 5mg. Some people are taking a very low dose 1mg to test their reaction. If you have a longer infusion time with more dilute IV, you can avoid some of the adverse reactions. It does work well for some. It prevents fracture. It is one injection thought to last 2 years. And it will provide some fracture protection for ten years.
If you have any autoimmune activity you are more likely to have adverse reactios. This small 13 person study from Israel is scary https://pubmed.ncbi.nlm.nih.gov/28567535/
And then Reclast doesn't build the best bone. It works by blocking the cells that break bone down, without those cells the process of building and rebuilding is slowed down. Your bones collect older bone that is avascular and more brittle. The best bone is the remodeled bone built by Forteo or Tymlos. Given a choice I chose Forteo. These drugs have the disadvantage of cost, and you have to inject them everyday. But, if you have an adverse reaction to them or a side effect, you stop taking them and they leave your system within 24 hours.
If you scroll to the top of this page and write Reclast in the search box, you'll find warnings and encouragement going back years. https://connect.mayoclinic.org/search/?search=Reclast or you could tap the link.
Welcome to Connect. Traffic is a little slow these days, but you'll get more responses.

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Thank you. I have 24 more replies to look at and have yet to see a positive one. Someone tols me to put reclast in the search magnifying glass and the were over 5000 comments. I was led to beleive it was a one and done but it appears some are on it for 2,3, 04 more years.

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@psanchez33617

@dsuefowler it surely is a case of damned if you do and damned if you dont and broken bones are not at all fun. We could share stories on that, I am sure. I guess it all boils down to risk vs benefit but for some of us there is a high degree of risk and not as much benefit. Where are the comments from the people that have had good experiences with these drugs? I do know that there has to be some, but not in my world. Forteo only stays in your system for a short time, thus the need for daily injections. It is why I consented to try it. My doc wants to pursue other options but I cant imagine what it would be like to have a reaction to a drug that stays in your system for a long period of time. For now, I will take my chances with alternative methods, diet, exercise and focus on being as strong as I can.
When you were taking a half dose of Tymlos, why did you switch to Forteo?

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I took a half dose of Tymlos from February 2024 through November 2024. I went to a new endocrinologist, mostly because the one I had didn't seem to know much. He said that I knew more than he did. The new Endo thought it was better to be on a whole dose of Forteo than half of Tymlos. I felt good on 20 mcg Tymlos and wouldn't have even tried Forteo, but the Endo gave me a sample. I tried it and surprisingly at first it didn't bother me. Then in the fifth month I started having issues. I have a lot of pain, especially in my legs, fatigue, brain fog, as well as frequent and urgent urination that keeps me up at night. I hope your natural path works for you @psanchez33617. I know that I felt best without medication.

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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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