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

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?

susansantafe,

Generally these post market studies are done by institutions (universities, large clinincs) or the drug company. I think it is unlikely they will do any this far out from the drug release. I have been pushing for a case study report for my pseudogout. So far I have not found any takers. I was thinking if enough case studies were reported that might raise some red flags.
I did contact the FDA about the pseudogout. I was uncertain about the tinnitus. But now with you also experiencing ototoxicity, I should report my tinnitus to them. You could do that as well.

Is it pretty obvious how to report this to the FDA? Given the shambles the FDA and medical research funding are in right now, I’m skeptical that anything will come of it.
Has anyone considered a class action lawsuit?

I had my infusion in June 2024….Some 10 months ago. I saw my endocrinologist in November and shared my experiences and on going issues; nauseated, exhausted, pain in both shoulders and pain in the bottom of my left foot. He shared that these things that I am experiencing has nothing to do with the infusion and recommend physical therapy and for me to see a neurologist. Well, I have been doing physical therapy and still going. Seeing a neurologist required a referral from my primary, who did not see the need. Ten months later I’m called to come into the endocrinologist office for a consultation with their pharmacist. In doing so, it was expressed that they wanted to give me a different medication that would be in the form of a shot instead of the infusion, to which I declined. A day later I received a follow up call suggesting that I have scan preformed as soon as possible to see where my scores are at and to also see if the Reclast infusion did anything for me and they also sent a referral to my primary and suggested that I see a neurologist for my on going symptoms; I go this coming Monday for my scan test. They then scheduled me for a follow up appointment with my endocrinologist; January 2026!
I do have some underlying medical issues that could be contributing to the symptoms ; Ankolosing spondylitis, bladder cancer treatment (5x) and a constant burning sensation in the bladder area caused by the treatments. So, maybe I am a little more sensitive to these medications. All I read about Reclast and they take ZERO acknowledgement for these symptoms and then say, well maybe for a short period of time but not 10 months out! And to conclude; I’m told that it is okay to take your time and really think about the benefits of receiving this injection that has very little side effects; severe lower back pain and/or jaw discomfort; like I really want to take a chance on either !
The more I sit and think about the issues the worse the symptoms! Honestly, our brains and developed to assist in our bodily functions and to prevent us from doing things that can hurt us….not always providing the correct information. I know I did not injure myself to cause these pains and feel that I need to keep sending the message to my brain that this pain is only temporary and only caused by my poor judgement of receiving an infusion that had so many side effects.
Try, and I emphasized really try and focus away from the pain and focus more on your daily activities! Our Brain has alerted us there is an internal problem. Okay, I acknowledge this, now I’ll take control from here out and just really try to focus less on the pain and more on your daily task and hopefully, eventually the pain will lessen and life will become a little more manageable!

I also had Reclast infusion 2 month ago and I followed all the precautionary steps of hydration before and after, Tylenol. I had extreme reaction to it for the first week I had flu and fever symptoms. and since I have joint pains in my knees, elbows, hips and muscle cramps in my legs, and arms. I was very healthy before, and rarely had any pains. Now I feel I am becoming handicapped. I reported all this to my doctor, but he just tells me to take pain killer medication, and wait.

I have not followed this whole thread and I don't know if what I'm going to say has already been discussed but here goes.
The trials showed that about 1/3 of people get acute reactions to the first infustion of Reclast. These are most often 1-3 days long starting from 0-3 days after the infusion. Some unknown percentage of people get reactions that start later and may last for long periods. There is as far as I know, no study of these long term reactions. IMO it is these sometimes long lasting and sometimes severe symptoms that is the main problem with Reclast. Not the unpleasant but short term acute symptoms.

There is no evidence as far as I know that all the tricks and strategies for reducing Reclast work. Maybe they work and I'm not denying that they may work, but just saying it's very difficult to be sure they are working. If someone takes Tylenol or Claritin or whatever and has little or no reaction to Reclast that does not necessarily indicate it prevented a reaction. After all, 2/3 of those taking it have no reaction anyway. And a much smaller percentage have reactions to Reclast on subsequent infusions.

Next, there is no evidence as far as I know that stopping the short term symptoms would have any effect on whether or not one might have the much more problematic long term symptoms. It is very important to distinguish between these two symptom categories in evaluating Reclast and most of the discussions on groups and forums mix these two different types of symptoms and their consequences up. Short term could be quite unpleasant but usually gone within a week or so. Long term can wreck lives.

Just to add to the brew there is an analysis suggesting that those with more short term reactions to Reclast have fewer fractures down the road than those that have no reaction. And no one knows whether taking the Tylenol and Claritin and so on might alter the possible benefit seen in those who would have the short term reactions. BTW, the less fractures seen in those with more short term reactions was not shown in bone density, just in fractures. Fractures being the most important thing but harder to measure and study.

And finally there is the possibility, that lower doses which DO work just as well as the standard high dose, would be safer and less likely to cause bad long lasting side effects. It's common sense and quite logical that one should only take as much of a drug as is needed to produce the desired effect. That is not how the dose and scheduling of Reclast was determined. If interested see the discussion I started entitled "Are we overdosing Reclast???" for a lengthy discussion of that topic.

@awfultruth
I agree with what you have said. I would take the short-term side effects any day over the long-term side effects I still have 15 months post my one and only Reclast infusion. I had minor short-term side effects. My muscle, joint and bone pain have come and gone in all areas of my body and it is sometimes quite debilitating. I stopped Fosamax because of reflux and went to Reclast. I still had reflux on Reclast in addition to everything else. I also lost about 1/3 of my hair, which thankfully came back but now is falling out again.