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

I'm so sorry that this happened to you. I had horrible side effects from neck stiffness and jaw pain that occurred three days after the infusion. Months later swollen and painful joints that required steriods. I also took tylenol and drank a lot of water, 64 ounces, before and after. They also flushed and delivered the infusion at a slower rate. I told my doctor and she said she would put me on Prolio. I replied with a "hard no!" That drug is worse. It had a black boxed warning. Plus having breast cancer, cancer cells love to go to the bone and Prolio encourages that. That was my endocrinologist. The newest doctor I went to, specializes in osteoporosiss. We both agreed that I would do life style changes with weight bearing excercises. She really listened but she still said that if my DEXA scan came back with more bone loss, we would do Reclast as it does help with reoccurance and doesn't encourage cancer cells to latch on to the bone. Finally, all the doctors I've been too, even the specialist, told me she didn't believe it was the Reclast and she offered other ways to help with the side effects with steriod before and after. ARGH! I wish every doctor was required to read some of the these comments from actual patients. Why after 65 years would I suddendly have issues and the only link is the Reclast infusion? I can't take Prolio and oral medicine as I have severe GERD. I'm sure many people don't have reactions but I'm on a FB support group that actual confirms my belief that there are a lot of us out there and pharmaceutical companies and professionals are ignoring. When I shared this with my doctors, they all had a unified reply that I'm only reading about complaints and Reclast is very safe and it's very rare to have side effects. I replied that there were thousands of complaints on one FB group even on this forum. Something is very wrong here! To answer your questions, yes to manage your side effects you need to take more medicine and see your doctor. Don't be surprised to have them say that they don't believe it was the Reclast but the Reclast caused some underlying conidtion to manifest. So basically, yes it was the Reclast.

Were you on any treatment before the reclast, because I’ve had bad neck pain ..jaw pain, etc from the Evenity shots.

I wish researchers, doctors, or someone would collect data on who had acute phase reactions and who didn't, as well as who followed the protocol for prepping for the infusion and who didn't. I think there are many here who were not properly informed of how to minimize those reactions. My endocrinologist knew about the water and Tylenol but had no idea about taking Claritin or an equivalent. I learned that from this group and am so grateful. The infusion nurse thought 30 minutes would be fine, and I said no to that...too short...and she did 45. There seems to be a huge disconnect in the medical community regarding how the Reclast infusions should be done.

I totally agree. Going to have my Reclast infusion next week and my endocrinologist told me absolutely nothing!!!
I had to ask about 45 minutes for infusion and she said for me to tell them when I get there.

That's what I had to do as well. The nurse was absolutely fine with changing it to 45 minutes. Be sure to start hydrating well 2-3 days before, the day of the infusion, and for a couple of days after. Tylenol (I did 650 mg 2x/day) and Claritin (or equivalent, one 24 hr. tablet per day) at least the day before, day of, and day after. I did 2 days before and after, I think. The nurse also did a saline flush (???) before and after, I believe. Best of luck! I will be thinking good thoughts for you.

I have had significant hearing loss in both ears, now 6 months after the infusion, plus increasingly shrill and loud tinnitus that started the day after the infusion. My audiologist is telling me that Reclast can be “ototoxic” and that tinnitus is likely permanent and the hearing loss may be progressive. I am extremely upset especially after reading the terrible other “side effects” others have experienced. This is just ok.

Thank you for your input.

susansantafe,
I am so sorry you have had such bad problems with your hearing. I too had the onset of doubling of my pre existing tinnitus after the Reclast infusion. My tinnitus is so loud that it really disturbs me all day long. It started just after the infusion and is still with me 11 months later. I could not find anything online about Reclast causing tinnitus. I do not think there have been any follow up studies after the release of Reclast for use in the general public. Therefore all the providers depend on the initial studies during the FDA trials for possible side effects from the drug. We are missing all the side effects that would have been unmasked with world wide use of the drug with significantly larger population numbers to study. It is interesting that your audiologist knew about the ototoxicity of Reclast. I also have had unrelenting pseudogout of my right knee for 11 months. It is quite painful and has limited my everyday activities. I will never use Reclast again.

I did see online that hearing problems can be a “rare” side effect of Reclast. But, without actual data, no one can know the frequency or other details. And now, reading here about the terrible various kinds of symptoms others have experienced with Reclast, I’m pretty angry and upset that I didn’t know any of this before using it.

I want to do something about this to make others, especially the doctors who prescribe Reclast, become aware of the dangers so they caution their patients. I view them just as much the innocent victims as we are of the drug company’s masking the dangers of a medication that stays in the body for one year or longer and that can have such devastating and lasting effects.

Does anyone have suggestions?

thankyou for sharing your experience. I already suffer from tinnitus and was planning to shift to reclast post teriparatide.. i've yet to start the teriparatide. these experiences are so scary. god willing ur tinnitus will gradually die down and hearing regained fully. side effects can wear off too.