bone pain four months after Reclast Infusion

@kabmax259,
Zoledronate in the bone isn't causing the reaction. Rather the reaction is self sustaining or has triggered other immune reaction no longer dependent upon the bisphosphonate. Less than 1% of the drug remains in serum within 24 hours. It is secured in the bone (This is why five day prednisone might stop the reaction. ) and is released in small amounts when osteoclasts try to attach to the bone.
I can't find the article, but spoke with the pathologist who authored it. He said, interestingly, but not relevantly to your post, that the bisphosphonate adheres in clumps not evenly at all, at the sites where bone is already weakened.
I hope that you have a good appointment with the rheumatologist who is sure to be more familiar with PMR and arterial inflammation than with Reclast effects. Maybe you'll post his views. I like the telemeds because you can record them.
I like the doctor who made the possible connection between immunotherapy and the susceptibility to this inflammatory reaction.
You've been through too much already.

dannyandebbie, that would be my impression. I'm only qualified to guess, but it's nice of you to affirm my suspicion. Do you have confidence in the AS diagnosis.

AS diagnosis, assuming that you are talking Ankolosing Spondylitis…..I was diagnosed with this at the age of 18. I felt I had a great doctor until he discussed breaking bones and doing reconstructive surgeries. To this day, 51 years later I still have severe foot and leg pain and take nothing for it because of my low level of tolerance to medication. A year ago I went back to Rheumatologist after some 30 years thinking before I retire, new advanced research maybe I could get some relief from this pain that I’ve experienced for years. I was told that I do not have AS and sent me to Neurologist who could find nothing wrong. Then I received Reclast infusion; constant pain in both shoulders, left foot, nausea most days, exhaustion all the time and lately I’ve noticed blurred vision. I think I’m done with treatments! So, to answer your question, I’m really not sure after living with it for almost 50 years and then being told I don’t have it!

About 3-4 weeks after my second infusion of Reclast in November 2025, I suddenly developed significant bilateral shoulder pain. Discussed it with my PCP who, after researching, felt it was not related to the infusion because side effects were not usually delayed. However, the pain continues, more intensely at night, making movement in the morning difficult. Less often, I have had pain in my hips, thighs and lower legs. I hydrate well and get no real consistent relief from NSAID’s or Tylenol. It seems unlikely that I developed osteoarthritis in both shoulders at once!
Prior to the second infusion , the Endocrinologist saw some improvement in bone density. I meet the criteria for osteopenia in most of my bones, with osteoporosis in my right forearm only. Wondering if anyone else has experienced this and if it improves by stopping any further infusions?

@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.

@jozer that reclast can’t cause pain months after is misinformation I had a reclast infusion 7 months ago and I still can’t walk without pain! It’s poison.

@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.

@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.

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.

@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