bone pain four months after Reclast Infusion

Posted by newenglandseasons @newenglandseasons, Aug 25, 2024

Does anyone have a story

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Profile picture for dannyandebbie @dannyandebbie

@gently from what I see, a dose of prednisone would be an indicator if one has PMR….meaning, if prednisone treated the symptoms then it could be PMR, correct? I had prednisone therapy and it did nothing for my symptoms; symptoms that did develop after the Reclast infusion. Again, underlying conditions probably could have added to my issues, triggering these symptoms. Guess I’ll never really know as my endocrinologist sends me to rheumatologist who sends me to neurologist who suggested I see an endocrinologist. I see an endless circle that would make others wealthy and myself frustrated, so, I chose to just step out of that circle and go day by day and a little help from my physical therapist who I go to biweekly, for now!

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@dannyandebbie I too received the prednisone treatment and it did nothing for my symptoms. It can be scary. I try dealing with the joint pain but recently my visions has become blurry and I had my eyes checked 3 months ago, all was fine! BS!

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Profile picture for gently @gently

@jozer, I wish the mechanism of this long term pain from Reclast were known. Does it seem to be in the joints. Some describe it as deep in the bone. I'm so sorry your are having this.

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@gently no not in the joints; more shooting pain in various areas of bone. And again, not debilitating just annoying. And scary because is it expected pain (per drug literature's side effects, not doctors opinion) or do I need to rush in to get an x ray to see if I have fractures? Deep in bone is a good description. Since drug literature says pain can be possible months after infusion I guess I will just attribute it to that.

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Profile picture for dannyandebbie @dannyandebbie

@harborside24 I am 23 months since my Reclast infusion and the pain continues along with new symptoms! People should seriously consider the possible consequences before taking the Reclast. I’ve had constant shoulder and left foot pain! Recently I’ve noticed blurred vision and the nausea symptoms are back. It is scary at first and then I realized there is No other reasons for these symptoms! You can go to any specific specialist and they all say the same thing; “ I can find nothing wrong” and perhaps for some unknown reason maybe they cannot. I know this is real, refuse to line someone else’s pocket living on a fixed income! I’m sorry I received this infusion and honest suggest people stop listening to these endocrinologist and Do so Research before injecting yourself with this poison. I am in hopes the day comes that my body overcomes this poison! Best of luck to anyone receiving or considering this poison

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@dannyandebbie I’m so sorry you’re going through this. My problem is that I tried for over a year years ago to control the osteoporosis on my own. Didn’t work. I was on Fosamax for 5 years, and I had improvement in year 3. But by year 5 I had really lost ground again. I had a terrible response to Forteo, so I can’t go on that or Tymlos. Because my sister responded horribly to Prolia, that’s off the table too. I certainly hope something new comes down the pike that does not have the side effects many of us have experienced. Good luck to you.

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Profile picture for harborside24 @harborside24

I had a great experience with Reclast until about 3 weeks ago. My infusion was in July of last year. No side effects. I thought I’d pulled a hamstring muscle, but it wouldn’t improve. Then the aching and sometimes pain began showing up in my lower back, my legs, and hips. It moves around, and that’s when I suspected the Reclast. The doc found nothing else wrong with me. @gently explained to me about the late onset reactions that are possible. The doc put me on steroids for the inflammation, and I’m hoping that helps. I’m a very active person and this is torture for me. But if the Reclast is doing its job and I can manage the discomfort, I’m going to try and stick with it. The other meds are not recommended for me.

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@harborside24, you are certain to understand the allergy to steroid medication far better than I do. But, if you are on prednisone, you might switch to dexa or betamethasone. Often it is the preservative or binder that is causing the reaction.
You are wise to consider damage to the bone. All the bisphosphonates carry the risk of osteonecrosis. The jawbone and the lower aspect of the femur are cited areas of risk. And although Reclast is a stronger ( and more effective infused) dose of bisphosphonate, osteonecrosis is uncommon and seen (normally) after years of use. Prior use of oral bisphosphonates, Prolia or Evenity would put a person at increased risk.
Pain at the upper segment of the thigh bone below the hip joint would indicate the need for imaging. Objectively it is reassuring that the pain is moving around. Subjectively, unless it feels muscular, ice packs are helpful to chase the pain especially when trying to sleep.
Bless your trip.

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Profile picture for gently @gently

@harborside24, you are certain to understand the allergy to steroid medication far better than I do. But, if you are on prednisone, you might switch to dexa or betamethasone. Often it is the preservative or binder that is causing the reaction.
You are wise to consider damage to the bone. All the bisphosphonates carry the risk of osteonecrosis. The jawbone and the lower aspect of the femur are cited areas of risk. And although Reclast is a stronger ( and more effective infused) dose of bisphosphonate, osteonecrosis is uncommon and seen (normally) after years of use. Prior use of oral bisphosphonates, Prolia or Evenity would put a person at increased risk.
Pain at the upper segment of the thigh bone below the hip joint would indicate the need for imaging. Objectively it is reassuring that the pain is moving around. Subjectively, unless it feels muscular, ice packs are helpful to chase the pain especially when trying to sleep.
Bless your trip.

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❤️

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Profile picture for daisy17 @daisy17

@margaret3363 Doctors need to be honest with patients about side effects from medication. I think some doctors avoid doing so because they think their patients will then refuse the medications. But by not being honest, doctors are causing more mistrust with the medical profession. So many on this site say they weren't informed of the side effects or when they experience them, their doctor is dismissive and says the drug can't be the reason even though the side effects are clearly listed on the drug literature.

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@daisy17 My general rule of thumb is that taking anything long-term in the way of pharma drugs should be researched, and you need to be comfortable that there is no other way to manage your health issues than taking artificial man-made chemicals into your system. So far, I have nixed HRT way before the medical industry gave it up, Osteoporosis drugs, cholesterol drugs (caused short-term memory problems), and the same with the cheap drug for urine leakage control. I have COPD, mild to moderate, and take maintenance medication, but I got off the steroids due to side effects like eye problems, and found one that has no steroids. I wasn't offered as a first choice by my lung doctor, and an occasional rescue inhaler. The Dr wants me to get CT scans annually as an early detection for lung cancer, but no way one scan is like 100 X-rays of exposure to radiation on my lungs, which are compromised already, can actually contribute to getting lung cancer. So the prevention screening is actually putting me at risk! My eye Dr wants me to take Vit A for my eyes, and I learned that artificial Vit A can increase my chances of lung cancer too. I knew someone in their forties hadn't smoked in over 15 years, worked out, ate right, and got lung cancer, and he couldn't understand how he got lung cancer. I'm wondering now how many high-potency mega doses of vitamins he was taking. You have to participate in your own healthcare; we have the resources now to research what we are being asked to introduce to our bodies that is not natural in the long term. That's why you have to keep going back to the doctor for check-ups, because they have to watch for side effects on what they're prescribing, and then they send that data to the pharma companies. Don't be a lab rat for Big Pharma. I've seen their salespeople leaving my doctor's office with their sample cases.

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Profile picture for jozer @jozer

@gently no not in the joints; more shooting pain in various areas of bone. And again, not debilitating just annoying. And scary because is it expected pain (per drug literature's side effects, not doctors opinion) or do I need to rush in to get an x ray to see if I have fractures? Deep in bone is a good description. Since drug literature says pain can be possible months after infusion I guess I will just attribute it to that.

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@jozer I too have experienced this shooting pain, more like electrical shock randomly throughout my body. It was very scary at first. It seems like it flares up for a period and then seems to settle down. One thing for sure, when I sense a flare up I will not be getting on my roof for any reason. It would be nice if we could seek some specialist that could give us that quick fix but that is not going to happen! I go to physical therapy biweekly and try to stay as active as I possibly can; nothing else seems to work. Just rest assured, no more treatment for me. Once that poison is in your system we can only count on our body to do its best to fight back; doctors do not have any good answers, only guessing!

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Profile picture for jozer @jozer

@catkm and yet the drug literature for Reclast states that pain, sometimes severe, can occur months after infusion. I have experienced pain (not debilitating; but sometimes severe, comes and goes) in multiple body parts; fingers, forearm, legs, back, feet, ankles, etc. Also had bone pain on Fosamax (also a bisphosphonate); doctor had me take a two-week break (twice in the almost 1 year I was on Fosamax) because of pain. But he said reclast can't be causing pain months later. I say BS! I am due for another infusion around July, but DEXA is every two years so no testing (other than CTX, NTX, and other bloodwork for infusion) so I will not know completely how or if my bone density has improved.

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@jozer look for a REMS Echolight center in your area for an Ultrasound bone density. No radiation, self pay usually around $175, and you can have it as often as you want as it is ultrasound and no radiation. A great tool to see how you are doing in between DEXA scans. The technology is available at OsteoStrong Centers and more doctor offices are offering this. Just Google Echolight REMS technology available in your area. They are popping up in a lot of places as the popularity swells for this effective bone density test.

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Profile picture for humphreysbr @humphreysbr

@jozer look for a REMS Echolight center in your area for an Ultrasound bone density. No radiation, self pay usually around $175, and you can have it as often as you want as it is ultrasound and no radiation. A great tool to see how you are doing in between DEXA scans. The technology is available at OsteoStrong Centers and more doctor offices are offering this. Just Google Echolight REMS technology available in your area. They are popping up in a lot of places as the popularity swells for this effective bone density test.

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@humphreysbr Thanks for your comment...DEXA is not the only thing out there (although the so-called gold standard for diagnosing osteoporosis); TBS and Echolight/REMS (along with bone markers) are also becoming more important pieces of information to have since bone health and its treatment appears to be a vague and somewhat new field. I am having a heck of a time trying to get a DEXA after one year of Reclast; they allow every other year and even with private pay I can't get an answer on pricing - I've been quoted $1200 to $500 at the place I went last year, depending on who I talk to! And I can't have a DEXA at all without a referral, which my doctor did do but only for the center I went to last year. Another hospital system offers DEXA with TBS but not my doctors' system; thus, I can't go there without referral even with private pay.

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Profile picture for humphreysbr @humphreysbr

@jozer look for a REMS Echolight center in your area for an Ultrasound bone density. No radiation, self pay usually around $175, and you can have it as often as you want as it is ultrasound and no radiation. A great tool to see how you are doing in between DEXA scans. The technology is available at OsteoStrong Centers and more doctor offices are offering this. Just Google Echolight REMS technology available in your area. They are popping up in a lot of places as the popularity swells for this effective bone density test.

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@humphreysbr My husband and I both had REMS done in January. But after the most recent research in 2025 and 2026, and my own situation, I no longer trust the results.

Here is the paper from this year.
https://link.springer.com/article/10.1007/s00198-026-07960-4
EXCERPT: "Conclusions
REMS-BMD and fragility scores are strongly influenced by demographic inputs, particularly age and weight. The REMS output therefore reflects an assessment of BMD and fracture risk strongly based on demographic parameters, rather than an ultrasound-based direct skeletal measurement. "

Here is a discussion of REMS, including discussing the 2026 paper from MelioGuide:
https://melioguide.com/osteoporosis-prevention/rems-bone-scan/
EXCERPT: "The Bobelyak et al. Study (2025)
An earlier study by Bobelyak and colleagues found similar concerns. Their model using only age, sex, and BMI accounted for approximately 90% of the variability in femoral neck REMS-BMD. Perhaps most provocatively, they reported that REMS showed only minimal change in hip BMD values after a patient had a metallic hip prosthesis inserted, a scenario in which any device truly measuring bone should show a dramatic change."

I am in the unusual position of having both of my hips tested with REMS, which was the key reason I got the scan. I was very surprised that my hip with the osteoarthritic knee that I have been favoring for over a decade had the same REMS T-score as my healthy knee. My good knee has been taking the brunt of higher loads and more impact for over a decade. Other studies show that this imbalance should give someone's healthy knee better BMD than a load-reduced non-healthy knee. These 2 studies explain the apparently-bogus REMS T-score measurements on my should-be-different hips.

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