Reclast side effects
Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?
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bmrus,
I suggest that you educate yourself about osteoporosis before you see the endocrinologist. I hope that your doctor is knowledgeable, but do not assume that he/she is.
Osteoporosis is a side specialty for endocrinologists. The one that I see knew less than I did. I bounce back and forth between him and the rheumatologist who is also
underinformed, but more willing to learn.
@bmrus I second the idea that it helps to know about all the medication choices before seeing the doctor!
Here is a brief outline:
antiresorptives: bone density increases because bone turnover is suppressed
Prolia (denosumab)- injection monthly
Bisphosphonates (Fosamax/alendronate, Reclast/zoledronic acid); Fosamax is oral, Reclast is infusion usually annually
anabolics (Parathyroid analogs)- daily injections- build new bone
Forteo (teriparatide) 20mcg
Tymlos (abaloparatide) 80mcg (adjustable dosing with pen)
both anabolic
Evenity (rosozumab) anabolic (first months) and anti-resorptive - monthly injections (two shots)
For more severe DEXA scores or fractures, we want to start with a Tymlos, Forteo or Evenity because the anti-resorptives make the bone builders less effective if used afterwards
@bmrus you're very smart! I wish I'd researched prior to my infusions. I've had 2 now.. Mild side effects the 1st time but much worse this time. I notified my endocrinologist & she said "Reclast doesn't cause those symptoms." I'm done with the Reclast and done with that doc.
I understand, for me it is so scary to take some of the medication due to side effects. I'm hoping I can educate myself and be prepared when I get my appointment with the doctor.
@bmrus for me Tymlos was the least scary because I could start at a low dose and move up, giving my body a chance to adjust. It is short acting so it is out of the body quickly too. That's just me. Others had a good experience with other meds.
I do not know what you read about Reclast but I have had 5 Reclast infusions. I never experienced a side effect. The only problem with Reclast is that you can only do 5-6 infusions. My endo is now suggesting Prolia to me.
Don’t be afraid of Reclast. You HAVE to take something to keep your osteoporosis from getting worse and build strong bones.
@susanjane77 will you stay on Prolia forever or do Reclast again? I am wondering if we use up the allotted 5 infusions, whether it can be safely taken again after some time. Have you been able to do a drug holiday? Would you consider Evenity?
I was informed that once I start Prolia, I will be on it forever. 2 shots a year. No going back on Reclast as I reached the amount of infusions recommended.
I could take a drug holiday for one year but I rather not. Since I can only get DEXA test every 2 years, I don’t know if a drug holiday would make matters worse.
I won’t consider Evenity as it is a shot every month and my doctor saw better results with Prolia.
There is so much to consider and it is overwhelming to me. Fortunately, I have not experienced any fractures and I hope to keep it that way.
I mentioned a few days ago that I was going to a new endocrinologist on Monday 8-19-24. I mentioned to her that I had serious side effects from a Reclast infusion. She immediately went into a discussion of taking calcium and vitamin D. Yeah. Been doing that for years. I even had a list of my side effects on a piece of paper in my hand. She didn't even ask to see it. And before I could show it to her she was packing up her notes and getting ready to leave the exam room. On the way out I asked my boy friend if she had said anything about Reclast. I thought I missed something. He said "No. She hadn't mentioned Reclast." I was the only one who mentioned it. She had no comment. And that was the reason I was going to her...to get some answers regarding Reclast. Strange. What are these docs afraid of?
@susanjane77 could you ask about doing a few months of Evenity (the anabolic phase) before going on Prolia? I have no idea but it might be something to ask about.