Does anyone have a solution to help manage Reclast side effects?

I had a Reclast infusion in 2018 with no side effects. I had a second infusion on Thursday, August 1 of this year, one month after completing a year of Evenity. That night, I began to feel distressed. By 4:00am, I had a temperature of 101. I continued to have spiking temperatures as high as 103.2 despite taking Tylenol. I was so weak I could barely make it to the bathroom. Couldn’t eat or drink, slept when I could. By Sunday afternoon, I agreed to go to the ED. I was admitted with fever, tachycardia to 120, low BP (85/54). Labs showed anemia, hypokalemia and lowered electrolytes. Other symptoms included episodes of profuse sweating, coughing that was painful to the lungs, labored breathing (O2 at 85) and blurred vision. The docs thought the Reclast was a red herring and that I had a viral upper respiratory infection, due to having a chronic lung condition. I was treated with two IV antibiotics, IV fluids, and Tylenol and discharged with a 14-day prescription of oral antibiotics the following Wednesday. Today, 16 days after the infusion, my temperature is almost normal at 97.2 (by baseline is 96.8). My body is relaxed and I’m enjoying food again. Still tire easily, am fatigued going upstairs and sitting to floss. Because I developed anemia, I Googled Reclast and anemia and found a very long list of side effects. I identified 22. I have no doubt that this acute event was caused by the Reclast.

So what I’m wondering @heartfelt, did the Reclast still prevent bone loss for you, even though you had an adverse reaction? Also wondering what you and your docs decided on treatmentwise since then.

Regarding resolution, I’m drinking a lot of electrolyte water, and will go to the gym for paced treadmill walking and easy leg press to begin to gain strength. Thank you all for sharing and thanks @dingus for posting the question.

I called the FDA in Atlanta on the correct line for help. I got a recording. There is no help and if you find any please let me know. No doctor will say it was Reclast. They make money for our taking the infusion.
I eat really well, and cut out specific foods that are bad for bones. I walk and lift weights. I take supplements and I do have chlorophyll that is mixed with water and I drink that. There is a lot of information out there about osteoporosis. There are online groups and special exercise coaches just for people with low bone mass. Check them out. You will find more information online than from any doctor.

I believe they have terrified you and your understand how this happens. Please know that stress hurts bone as it produces cortisol.
I only had one Reclast infusion and it made me very sick. I have had nothing sense. I lift weights and walk and live my life. I read books about this and I took a three month course. Low bone density does not mean low bone quality. You do need to learn how to move your body. Go on Facebook and search for Brick House Bones with Dr. Lisa. She has a PHD in physical therapy and specializes in osteoporosis and osteopenia. Don't say all that you wrote above. Just watch and watch and watch until you see what's going on and you will likely begin to feel more at ease.
Do it for one week at least and then contact me again. We can exchange personal info and be in touch. There is a way. I do not trust doctors. They make a lot of money off of these drugs and if sick people. I do not trust the FDA. Blessings to you. Please smile and take a deep breath. You got this.

@findtheanswersdn
I am a patient at Mayo Rochester and will send you a message..

@findtheanswersdn, that is a lot of moving parts, diagnoses, procedures and medications to plan and work with while facing big treatment decisions on the horizon. It must be tiring and stressful. While you mentioned some frustrations with your treatment, it sounds like you have upcoming appointments where it may be more beneficial to straighten out much of your questions in person. Your post is a nice list of questions that would be worth bringing forward during your appointment times.

@19kcm mentioned they are a Mayo Rochester patient and may be someone to ask a few questions regarding their experiences at Mayo Rochester.

@heartfelt70 what does the chlorophyll do, detox?

@roisin11 hi did you have a preexisting condition of lung problems? Before reckast iv.? Did the dr check all your electrolytes BEFORE GOING ON RECLAST. HE SHOUKD HAVE ? GLAD YOUR BETTER. I HAVE COPD IM SCARED TO DEATH TO TAKE THIS DRUG IN 4 MONTHS. IM GOING TO MAKE SURE I HAVE A COMPLETE ELECTROLYTE PANEL BEFORE I GET THIS. WAS TOLD TO HAVE NO LOW VIT D OR CALCIUM OR IRON, PHOSPHOROUS, POTASSIUM, MAGNESIUM, SODIUM ETC. DR SHOULD CHECK CREATINE AND CREATINE CLEARANCE AND EGFR FIR KIDNEY FUNCTION AND I HAVE HAD LIVER PROBLEMS. I NEED THEM ENZYMES CHECKED BEFORE TO? GLAD YOUR OK NOW.

I take it for its antioxidant benefits. Inflammation is bad for bones.

@findtheanswersdn Hello and thank you for the question. Yes, I had preexisting lung issues going back to 2004, so going back 20 years. As a result of those health issues, I have been supplementing with electrolytes, vitamin D and calcium, had a series of iron infusions in April of this year, and all the other minerals and creatinine and eGFR are good. So I can't say that the reaction to the Reclast was caused by or associated with any vitamin or mineral deficiency. The iron supplementation was to help resolve fatigue. I have three osteoporosis specialists--an endocrinologist, a rheumatologist and Dr. McCormick--and discussed this event with all of them. The docs insisted that Reclast did not cause the upper respiratory infection, and informed me this year after my repeat DXA, that I needed another infusion of Reclast. The first infusion did not maintain bone density scores as expected, they say it partially worked. Due to my lung conditions Prolia was more or less prohibited, so Reclast was the only medication that was recommended by all three.

My rheumatologist told me that about 5% of patients experience a negative reaction after Reclast, and 5% of those folks experience a negative reaction after the second infusion. The chance of reacting a second time seemed extremely low.

So I decided to have a second infusion, which I had October 16. And she was right about having no reaction this time. I had none. I was well hydrated before the infusion and the medication was infused over 40 minutes (instead of 15), and I rested over the weekend, and I'm fine. So far. Interesting, right?

I wish you all the best with your treatment and your health.

@findtheanswersdn
I understand that you are frightened and don't blame you.
I have COPD and emphysema and have been on inhalers for at least 20 years . I hope you are seeing a specialist that is monitoring you and that you trust and that you get an annual bone density test and bloodwork before they decide what medication you need that year .