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.

@kar50, when you stop Forteo the cells that remove older bone will drop more significantly than the cells that add bone. Alendronate or Risidronate are probably strong enough to maintain the gains on Forteo. But you could keep track of the change with bone markers CTX and P1NP.
Reclast is probably too large a dose for most of us. They do know that 4mg is as effective as Reclast's 5mg. You could ask for zoledronate which is easier to get in a lower dose. Also, Reclast is thought to be effective for two years for most people.
The side effects can be overwhelming, it seems especially for those with other autoimmune systems. If you decide on Reclast be sure and ask your prescribing doctor to write for a longer infusion 30 min to an hour. It's easier on your kidneys.

@roisin11

I had the same bad reaction to it. I just had my 1st infusion feb 25th. I woke up yesterday with a very high fever, tylenol barely touched it. I had to basically sweat it out. I have bad bad bone pains all over my body. Even my jaw bone hurts 🙁
I got it due to having a very rare bone disease that has no cure. Just can mange symptoms with Bisphosphonates. Right now there is only 2 for my rare disease. Im nervous to get it done again if my body reacted this bad to it. I been staying hydrated so i dont get it. I even threw up in middle of the night, the night of my infusion. Dr said if i have bone pain a few more days to let her know

@crissiec, you might ask your doctor about a short course of prednisone. Sometime the cytokine release is self sustaining. There isn't a way to remove the medication from your system. But you can stop the cytokine cycle.
No one wants to take steroids with osteoporosis. But the 5 day pack is said to cause less damage to the bone than the continuing inflammation.
Best wishes.

I am nearing the end of my two year Forteo therapy. I will have my DEXA scan in April, followed by appointment with my endocrinologist. She has already suggested that I will transition to RECLAST and I am now following the comments on this site. This is very discouraging, so many problems with Recast posted here.
Before starting Forteo, I researched for six months, gaining a lot of my information from this site. I have been very surprised and I guess fortunate that the Forteo experience has been just fine for me. No side effects, just the hassle of daily injections. I won't know if it's been effective, however, until the scan results.
In the meantime, I'll keep researching but right now I am extremely reluctant to begin Reclast and there aren't a lot of good alternatives. (age 75, active with the normal aches & pains of this age)

Are you kidding me?! I Do Not complain to family members about my symptoms!! My stomach Pain is real not something I can think away. Will power? So my joint and muscle pain are not real? I feel like a 96 year old. I don’t want to feel this way. I don’t burden my family about this Alien in my body. I sit in my recliner with a heating pad on my stomach all day. You think I want this? I appreciate your thoughts but I’m not there. Please keep your insane opinions to yourself. Not helpful at all.

crissiec,
Did you stumble upon the doctor who finally diagnosed, or was it a specialist you found after the long four years.
In looking at the relationship between immune systems, autoimmune systems and osteoclasts-the cells that resorb bone. I find this interesting, https://pmc.ncbi.nlm.nih.gov/articles/PMC6834200/.
but you may not.
It does seem, from patient reportage, that people with autoimmune systems have more troubled experience with Reclast. There is a Korean study administering steroid before the Reclast infusion. If you do decide to have another injection you might ask for a slower infusion with a greater dilution of the medication. But, at least it appears that the second infusion isn't as difficult as the first.
Explanation from a bone specialist
Up to 30% of patients can experience an acute phase reaction after their initial infusion of zoledronic acid. This APR, which starts usually about 6 hours post-infusion, and can last several days, consists of a fever associated with muscle and joint pains, similar to the symptoms with a bad viral infection such as the flu.
As with the flu, when a category of phagocytic T-cells, called gamma-delta T-cells, encounter the zoledronic acid, they engulf it. When a gamma-delta T-cell undergoes apoptosis, it releases inflammatory cytokines, such as IL-1, IL-6, and TNF-alpha. And these inflammatory cytokines mediate the temperature rise and myalgias.
These T cells aren't the target of zoledronic acid it is the incidental encounter that causes the release of cytokines. When the osteoclast engulfs alendronate or zoledronic bound to the bone surface. the osteoclast undergoes apoptosis (programmed cell death). This explanation from a bone specialist.
Cytokines can trigger the release of more cytokines accelerating the inflammatory reaction resulting in a longer reaction to Reclast. Your doctor seems aware of the possibility type of response. And is on the ready after four days, though the temporary reaction can be a few days longer.
Your situation is quite interesting. I hope Reclast works more comfortably, and successfully.

crissiec,
Did you stumble upon the doctor who finally diagnosed, or was it a specialist you found after the long four years.
In looking at the relationship between immune systems, autoimmune systems and osteoclasts-the cells that resorb bone. I find this interesting, https://pmc.ncbi.nlm.nih.gov/articles/PMC6834200/.
but you may not.
It does seem, from patient reportage, that people with autoimmune systems have more troubled experience with Reclast. There is a Korean study administering steroid before the Reclast infusion. If you do decide to have another injection you might ask for a slower infusion with a greater dilution of the medication. But, at least it appears that the second infusion isn't as difficult as the first.
Explanation from a bone specialist
Up to 30% of patients can experience an acute phase reaction after their initial infusion of zoledronic acid. This APR, which starts usually about 6 hours post-infusion, and can last several days, consists of a fever associated with muscle and joint pains, similar to the symptoms with a bad viral infection such as the flu.
As with the flu, when a category of phagocytic T-cells, called gamma-delta T-cells, encounter the zoledronic acid, they engulf it. When a gamma-delta T-cell undergoes apoptosis, it releases inflammatory cytokines, such as IL-1, IL-6, and TNF-alpha. And these inflammatory cytokines mediate the temperature rise and myalgias.
These T cells aren't the target of zoledronic acid it is the incidental encounter that causes the release of cytokines. When the osteoclast engulfs alendronate or zoledronic bound to the bone surface. the osteoclast undergoes apoptosis (programmed cell death). This explanation from a bone specialist.
Cytokines can trigger the release of more cytokines accelerating the inflammatory reaction resulting in a longer reaction to Reclast. Your doctor seems aware of the possibility type of response. And is on the ready after four days, though the temporary reaction can be a few days longer.
Your situation is quite interesting. I hope Reclast works more comfortably, and successfully.