Reclast side effects

I had my first Reclast infusion in June of this year on the 17th, 2024. Five days later I developed sever pain in both shoulder, forearms and left foot. I’ve been seeking PT to see if he can help relieve the pain. I meet with my endocrinologist on the 6th of November and shared my issues. He laughed and told me that I should go back to my Rheumatologist because the Reclast could not cause this pain and concluded that my next treatment; next June would be Prolia injection,( Denosumab). I’m not 100% sure as to what to do at this point; just hope this pain subsides!

He actually said that?? "Pain in extremities" is literally one of the side effects mentioned by the manufacturer, Novartis. Get a new endocrinologist!

I've said this many times: just because there's a medical degree hanging on the office wall doesn't mean the doctor is competent. It just means he went to med school.

dannyanddebbie, I think you posted about the shoulder pain awhile back. I remember because that was the first place I had pain, the first day after the Reclast infusion. Then the pain spread to various places. And I remarked that shoulder pain is kind of unusual since it's not a load bearing joint normally. And the 82 year old lady in the Cureus article also had shoulder pain. Of course it's the Reclast!! I've been having so many side effects and so much pain for a year and a half. And yes I need a new doctor. But why are so many doctors saying it's not the Reclast?? Check out the Cureus article. It was posted here a few weeks ago. Just see how many side effects you have with the lady in the article. I think you'll be surprised.

@dannyanddebbie if you do Prolia you may end up needing to do Reclast to manage rebound loss of bone. Unless you are in your 80's and can do Prolia for life. But if you have any problems with Prolia and have to stop, you will need Reclast.

The problem with osteoporosis treatment is that for many of us- and our doctors- there aren't that many options .

Every anabolic drug- Forteo, Tymlos, Evenity, requires a bisphosphonate, and Prolia requires a bisphosphonate even more urgently due to rebound. So if we cannot tolerate bisphosphonates, doctors have no way to treat us. Many doctors therefore seem to dismiss side effects because their focus is the disease and science has not provided another option. (Nothing in the pipeline either. I feel that more research would be ongoing if this were a male disease.)

It is possible that some of the pain we feel is due to bone growth; "growing pains." But some of us have some sort of inflammatory reaction to a med like Reclast. Doctors will feel that addressing osteoporosis is the crucial thing and side effects interfere with that focus!

It's easy enough to google side effects. I think it would be better if doctors googled, admitted side effects, and had an honest discussion of risk vs benefit. I like it when a doctor says "I don't know what to do" instead of "that drug doesn't have that side effect." Noone's pain should be dismissed.

My doctor does a low dose of everything for me., including Reclast, with IV hydration over an hour's time. Perhaps that approach will help someone.

@dannyanddebbie is Reclast your first treatment? Have you done Forteo, Tymlos or Evenity? If your osteoporosis is mild perhaps you could take a break for a year. That Reclast will hang around in bone for awhile. If your osteoporosis is severe, bisphsophonates are unavoidable at some point and just because research has not uncovered an alternative, your side effects should not be dismissed.

Thank You for your responses! Right off I saw where you wrote that some of the pain we can experience could be from bone growth; that is exactly what my doctors nurse shared prior to meeting with my doctor! I am a 67 year male that was diagnosed years ago with Ankolosing Spondylitis; a form of arthritis; I’ve had this for 50 years; effecting my back and legs. I felt that right after the infusion like I had been injected with something that highlighted any area that was of inflammation, causing it to be worse. I’ve never had issues with my shoulders but do now. The pain gets worse when I am idle, like sitting around or during the night. Some times I wake 5-6 times a given night and am unable to move my right arm without assistance. As the day goes by the pain lessen some as long as I’m staying busy. Almost as if I can only think of one thing at a time and my focus is on whatever I am doing and not on the pain intensity. I observe the pain there but try to not let it consume my activities.
Honestly, life is manageable because being retired I could tell myself that it is okay to take a short nap if needed and not beat myself up for needing it because I did not sleep well the night prior; although, I have not resorted to taking a nap during my day! I am visiting a Physical Therapist; limited visits because VA is only allowing 15 visits, so I am trying to stretch the visits out and try working more on my own and using him to monitor my progress, which might assist with additional sessions if deemed necessary.
Most of all this is new to me and a bit hard to understand. I have only experienced broken bones once in my life working on a truck I slipped and fell on the fender and fractured 4/5 ribs. I do experience a lot of on, off pain in my lower back and my leg pain is and has been constant since I was around the age of 18.
I am gathering that treatment is supposed to outweigh the side effects or why would they be offering treatment in the first place, right? I wonder! I also realize that our “Brain” is a very powerful tool and one of its task are to help protect us and when something comes along in our system such as the Reclast it reacts and this could be the pain signals alerting us that a foreign object has entered into our body? So, do we continue with treatment and perhaps seek some form of psychological therapy to help retrain our brain that this pain is okay and “ hopefully” not debilitating? I do have a little time to think about this but often find myself not wanting to think about it and then all of a sudden, appointment day is here and thinking, okay, what am I going to do? I apologize for going on and on! I did read the article about the 82 year old that was getting around fine, had a Reclast infusion and is now in a wheelchair; doesn’t really support me seeking additional treatment!
Thank You All for your replies, hopefully my reply helps someone else who is new to this treatment and options!

You hit the nail on the head. I've always said that the treatment should not be more painful than the problem.

The one size fits all for osteoporosis has to go. It is finally being recognized that cancer treatments can be almost as bad as having cancer and steps being taken to lower the dosages.
https://www.cancer.gov/news-events/cancer-currents-blog/2024/cancer-drugs-lower-doses

@dannyanddebbie what a great post. I think Reclast may increase autoimmune inflammation for me (I have lupus) and have read that it may cause some inflammation for other reasons. Sorry can't cite right now.

Whether the treatment effects are worth it depends on whether they are absolutely intolerable , in my view. For me, tai chi helps a lot with the kind of pain you are describing. You are doing a lot in terms of effort at making Reclast tolerable. I feel the same before appointments: what should I do, how much should I do, is there an alternative?

Whether treatment effects are worth is also depends on severity of disease and fracture history. Clearly, after 7 fractures, I am willing to submit to more side effects than someone without fractures or with milder disease. In fact, with mild disease I would argue most can first try more natural approaches (scores above -3.0). (I had a nasty cancer and yes, did treatment that had side effects and am still alive 10 years later.)

Finally, whether treatment effects are worth i, in my view, depends on what alternatives there are for addressing the problem. Therein lies the biggest problem. Science has not yet come up with alternatives that are effective and side effect free for everyone, and that means our doctors also sometimes don't always know what to do. (I prefer doctors who will say that!)

Different people have different side effects to different medications with different needs and different ability to tolerate. When I have a side effect, it is what it is: it doesn't make me angry at Big Pharma. It is my particular body.

It sounds like you are struggling with Reclast. Ankolosing spondylistis is no picnic (I have it too) and if it is worse, you are putting up a brave fight. We don't know how bad your osteoporosis is or if you have done any other meds. My main question to you would be: is there another treatment that you could tolerate? I was grateful for Tymlos. (I started at a low dose)

My doc is nervous giving me Reclast due to kidney issues and afib. He did not give it to me during cancer treatment, hence my fractures. Now he prescribes a 20% dose with one hour hydration, every three months . If Reclast is your only choice, you could discuss that. But surely there are other meds you could take and then lock in with a gentler bisphosphonate.

I have increased trigeminal and occipital neuralgia lately, and some GI issues. It is always hard to discern what comes from a medication, since it is often an amplification of something I already have. The thing is, fractures are life-altering and life-threatening. Fractures affect my digestion, my breathing and even cause heart arrythmias- as well as pain. Fractures actually increase morbidity and mortality.
When taking a medication with side effects, those concerns weigh heavily in my mind in terms of risk/benefit. Others may not be in as dire a place and have the ability to choose to avoid meds.

Honestly, some of this is completely out in left field to me! You talk about bisphosphonate, I was not sure what this was until I looked it up; another name for medications that treat Bone density medication?
I honestly have no idea what my ( Score) is. I do recall the doctor talking about vertebrates, hips but recall nothing else.
Both shoulders, right forearm, left foot and a constant nauseated stomach feeling are the results of my last infusion. Can I live with this, yes, will it get worse with another infusion, who knows! The nauseated feeling I am able to tolerate and sometimes will consume a small piece of chocolate bar and it seems to help, despite my having an allergy to chocolate if I consume a large amount!
Perhaps my next step would be to see if I can receive some notes that indicate where they actually scanned, results and maybe hold off on any additional treatment until they repeat a scan to see if it did anything? Looking for a suggestion perhaps!
I have had bladder cancer 5x and chemo treatment thereafter, my last was in January 2024; who knows what the chemo has actually done! I was told to exercise a lot and this would help build bone mass.
Open for any suggestions!
The golden years

@dannyanddebbie did you get my private message (envelope upper right).

Fosamax and Reclast are two of the bisphosphonates. Osteoporosis meds are:

antiresorptives: build density by reducing turnover
bisphosphonates (Fosamax/alendronate, Reclast/zoledronic acid)
Prolia (denosumab)

anabolics: build new bone via parathyroid
Forteo
Tymlos

anabolic first 1/2 and antiresorptive 2nd half of year:
Evenity (works by inhibiting sclerostin)

If our scores are bad, we tend to start with an anabolic or with Evenity and then go to an anti-resorptive. So if your bones are bad you could maybe switch? It would really help if you know your scores. You might want to pick up a copy of Keith McCormicks' "Great Bones." It is 700 pages but a great reference. He also does consults.

Unfortunately this is a disease that requires we know as much as is possible, and we even may need to guide our doctors to what we want to do, since doctors are limited by studies and established protocols. Sorry you are in pain!