Reclast infusion

I am told by my endocrinologist that it is not the Reclast! It is quite a coincidence that I received an infusion and the very next day I’m experiencing Terrible symptoms and pain in both shoulders, left foot, nausea and extreme fatigue. I have had these symptoms now for 11 months! Are things improving, yes. I have been going to physical therapy at the least, bi-weekly and really try to do my exercises every other day at the least. Last visit to the endocrinologist’s pharmacist, he expressed that the Reclast is active for around 18 months and that I am covered easily until I receive my next Reclast. I shared that until it can be proven and confirmed that the Reclast did not cause this….i will not be receiving any further infusions or other medications. What is the worse that can happen, fall and break a hip; they fix them daily now. ( I would not recommend going to a teaching facility for a hip replacement, a whole new conversation after six hip surgeries).
So, I would suggest seeking physical therapy, following an exercise program, Stay busy, ( idle mind is powerful). I know it is easier said than done! Try to recall, it’s not broken because I have not fallen to create this pain! The mind is powerful and alerts us when it senses something that is going wrong. We created this pain in a way( not 100%proven one way or the other); so we need to train our brain that this pain is not life threatening and hopefully over time the pain goes away, or we teach our brain that this pain is not life threatening and it becomes less and less. I hope you can kind of understand what I am trying to say. I’m slowly feeling better and I tell myself daily that I am in control, not the Reclast! Slowly improving! Keep positive

@ dannyandebbie

I have rheumatoid arthritis and am in daily pain. My endocrinologist wants me to have Reclast for my osteoporosis. I’m terrified to take it. I can’t take any of the oral meds due to GERD. I’m thinking of just doing nothing as far as medication goes. Has anyone else not done medication for osteoporosis?

Doing nothing is generally not a good idea. What is the state of your osteoporosis now? T-score, for example? And what is your age?

I have read that taking AIs causes rapid bone loss. Quicker than osteoporosis, that’s why they recommend the med. I’m also on the fence as I’m not sure it helps make the best bone.

Im sorry to hear your in such pain. I do hope it subsides for you so you can go back to being your active self enjoying the things you like to do.

I'm glad I found this platform so i can learn from all of you and hopefully be of help as well. I'm 66 and found out I have osteoporosis in October 2024. Lumbar spine is 3.4 and hips are in osteopenia and osteoporosis range (2.4 to 2.9). Since then I've declined meds (for now at least), worked with nutritionist and functional doctor to weed out food sensitivities that may be causing absorption issues, and to work on gut microbiome. I've increased protein and calcium and am exercising based on the LiftMore trial. After declining meds, my GP and I talked about getting another DEXA this coming October. He wants me to take meds if I've lost any bone density at that time. I am too afraid of the meds and not sure I will take them. I have had the pain of fibromyalgia since I was 30, so taking meds that could cause more pain isn't too appealing. In the meantime, I am researching to give myself every advantage I can.

@njx58

Lumbar spine: (L1-L2): 0.858 g/cm2 T-score: -2.6 Z-score: -0.9

Lowest femoral: Total Right- 0.655 g/cm2 T-score: -2.8 Z-score: -1.4

My learned rheumatologist told me there was NO way Tymlos could cause the types of pain I was experiencing . . . guess what . . . I stopped taking Tymlos and within days my pains had all subsided.

Btw, I don't think it's a good idea to think the worst that can happen is that you fall and break a hip - that's terrible (esp since you say you've had six surgeries already). I'm so fearful of having a fall and having a hip/femur fracture.

And, yes, we may start to have unusual pains from just getting older. Listen to your body and it'll tell you what's caused by getting older and what needs to be fixed. But, you are correct, even light exercise will help. I'm not a firm believer in PT, and I'm sure there are those of you who think chiropractic care is voodoo, but it worked for me. Cheers, all!

Sorry to hear so many people are experiencing a great deal of pain after having the Reclast infusion. None of the doctors want to address that Reclast could be the problem for so much pain. However, it sure seems to be a coincidence.
Even though I cannot say with certainty that the Reclast is causing the excruciating pain I'm having, after what I am going through I regret having the infusion. I agree that it would have been better to break a bone than to suffer night after night without much sleep, as well as a great deal of pain each and every day.
It's too bad that there is no way to reverse the infusion. I'm hoping that the spinal epidural will help, but have not scheduled an appointment.
Does anyone have experience with spinal epidurals, and what was the outcome?

My endocrinologist pharmacist shared that the Reclast remains active for up to 18 months! The severe sharp pain that I’ve been experiencing is slowly becoming a dull consistent pain or perhaps more like a weakness in my shoulders. It has been 11 months now! I am in hopes that as the days go by from this point forward the pain becomes less and my ability to get back to “ normal” if you will, returns. Having Ankolosing spondylitis is a constant pain all the time and I have dealt with that since being discharged from the military some 50 years ago. This Reclast infusion side effects is quick and sharp; often waking me up in the middle of the night with the least little movement on my part. I honestly have to say, this has gotten better over the past 6 or so months. So, maybe there is truth that the Reclast only last up to 18 months. Hang in there, exercise and yet rest when the need arrives; it will get better….i do wish the endocrinologist were a little more honest and vocal about the potential side effects rather then dismissing them!

I'm happy to hear that your pain is finally subsiding some, and hope that it won't be too long before it's gone. Before this happened, I had no idea how bad pain could get and remain a constant problem. I was always able to continue with my life despite bouts of pain for various reasons. My heart really goes out to all the people who are suffering with pain.
I'm still really not sure why I'm having so much pain. My whole situation seems very strange and makes no sense to me. My pain starts when I go to bed, intensifying during the night, and by early morning I have to get out of bed because everything in the lower half of my body hurts so much. When I get up, I can barely walk because of the pain.
As the day goes on, and I'm more active, the pain lessens, so that by the evening I'm feeling almost back to normal, although the pain is still there.
The doctors say that the pains in my lower back, buttocks, hips, thighs, knees, and legs are all due to narrowing of my nerve and spinal canals and recommend I get two epidurals in my back.
Usually, people who have such lower back issues, have pain caused by walking and/or doing physical activities. My pain gets better after I do physical activities. I wish I could find a doctor who would really listen to me and look a little more deeply into my symptoms. It may be that my pain is caused by something other than my back, especially since my back issues were diagnosed several years ago. During that time, I was leading a full, active life, walking, exercising, doing all my own housework and gardening, traveling, etc. Now, it is difficult for me to do most things without the pain overcoming me.
I feel that the doctors are not really listening to me and maybe there is some other reason for why the pain is so excruciating at night and when I first get up. My hope is that, like you, the pain will gradually lessen so that I'm back to my "old" self.