bone pain four months after Reclast Infusion

Posted by newenglandseasons @newenglandseasons, Aug 25 11:21am

Does anyone have a story

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@newenglandseasons. Are you experiencing bone pain after a Reclast intrusion? I'm wondering why you are asking for the "stories" from others.

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After the 3rd infusion of reclast i experienced a long period of deep bone pain. This last months and ended as quickly as it started. I have only read occasional mention of others experiencing this side effect. Wondering if there are others out there. I’m needing to consider trying it again.

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@newenglandseasons

After the 3rd infusion of reclast i experienced a long period of deep bone pain. This last months and ended as quickly as it started. I have only read occasional mention of others experiencing this side effect. Wondering if there are others out there. I’m needing to consider trying it again.

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I had posted on "Reclast Side Effects." I had the infusion in February 2023. The very next day I had severe shoulder pain. Then the pain went to my right foot. When I tried to stand up from a sitting position the pain was excruciating (I don't use that word lightly). I even got an ex-ray of my foot, but that showed nothing. The pain then went to my bones. It wasn't in the joints. I've had 8 hip surgeries, so I'm very familiar with joint pain. This pain was not in my joints. It was in the middle of my leg, in the bone itself. Also, I'm weak in the legs, tired all the time, have swelling in both feet, pain in my shoulders, foot, leg, toes (bad pain in toes), numbness in right leg, dizziness, cold sweats (unable to regulate my body temperature), and headaches. Two doctors have told me it's not the Reclast. How can it not be the Reclast? I was fine, got the infusion and all hell broke loose. Look on the thread "Reclast Side Effects" where more people share their bad experiences. I'm reading others comments and trying to find a doctor who will at least entertain the thought that it could be the Reclast. Until I find that doctor I won't be able to get any help from a doctor.

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@dingus

I had posted on "Reclast Side Effects." I had the infusion in February 2023. The very next day I had severe shoulder pain. Then the pain went to my right foot. When I tried to stand up from a sitting position the pain was excruciating (I don't use that word lightly). I even got an ex-ray of my foot, but that showed nothing. The pain then went to my bones. It wasn't in the joints. I've had 8 hip surgeries, so I'm very familiar with joint pain. This pain was not in my joints. It was in the middle of my leg, in the bone itself. Also, I'm weak in the legs, tired all the time, have swelling in both feet, pain in my shoulders, foot, leg, toes (bad pain in toes), numbness in right leg, dizziness, cold sweats (unable to regulate my body temperature), and headaches. Two doctors have told me it's not the Reclast. How can it not be the Reclast? I was fine, got the infusion and all hell broke loose. Look on the thread "Reclast Side Effects" where more people share their bad experiences. I'm reading others comments and trying to find a doctor who will at least entertain the thought that it could be the Reclast. Until I find that doctor I won't be able to get any help from a doctor.

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Drugs.com lists these side effects for Reclast:
"Very common (10% or more): Bone pain (55%), myalgia (23%), arthralgia (21%), back pain (15%), and limb pain (14%)
Common (1% to 10%): Myalgia, arthralgia, generalized pain, pain in extremity."

That two doctors told you that your pain is not from the Reclast is inexcusable.

Another side effect: "Rare (less than 0.1%): Atypical subtrochanteric and diaphyseal femoral fractures (bisphosphonate class adverse reaction)." So if your femur bone is where your pain is, you should get an x-ray to rule out a possible weakness in that bone that could fracture. This was told to me by a Dr about Foxamax, another bisphosphonate.

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I’m experiencing deep bone pain after eleven months on Tymlos. Tried cutting back to four clicks and six clicks but my doctor recommended every other day of 8 clicks. Still severe bone pain in shoulders, thumbs and fingers . I’m not on any other medication and weigh about 135. What do I do?

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Had my 3rd Reclast infusion in August. 2024. Never had side effects other than minor ache/headache within 3-5 days after. Pls note: I was given this dosage 6 most early because I fell on ice in January and broke my wrist, so was told I should have a booster. Three weeks later, I started experiencing bone/joint pain - debilitating joint pain. Literally, had to fold myself (don't know how else to explain it) out of bed, car seats, plane rides. And all over - from feet to hips, shoulders, neck, back fingers and toes!
My bone specialist said "usually only get side effects within first few days; check with your PCP." I waited a few mos., (there were some days of less pain here and there), then saw my PCP who ran tests (even Lyme and auto-immune) - all negative. Last week, actually had a few days were pain was much less; I was hopeful. Thursday it started again - pain level 9 out of 10 (and I have very good pain tolerance)
Yesterday, I wrote to my Bone specialist and sent all the tests. I asked if it could be bone growth (maybe wrong term). She replied "Reclast is not a bone grower and very inert after 2 das. The fact that you tolerated 2 prior infusions concerns me that this is a red herring..." So, she ordered me several tests to have done this week.
The fact that this started 3 wks after a "booster" infusion, forgot to mention jaw clicking which I never had, makes me feel this is related. Hoping it's nothing else -- stay tuned.

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@dingus

I had posted on "Reclast Side Effects." I had the infusion in February 2023. The very next day I had severe shoulder pain. Then the pain went to my right foot. When I tried to stand up from a sitting position the pain was excruciating (I don't use that word lightly). I even got an ex-ray of my foot, but that showed nothing. The pain then went to my bones. It wasn't in the joints. I've had 8 hip surgeries, so I'm very familiar with joint pain. This pain was not in my joints. It was in the middle of my leg, in the bone itself. Also, I'm weak in the legs, tired all the time, have swelling in both feet, pain in my shoulders, foot, leg, toes (bad pain in toes), numbness in right leg, dizziness, cold sweats (unable to regulate my body temperature), and headaches. Two doctors have told me it's not the Reclast. How can it not be the Reclast? I was fine, got the infusion and all hell broke loose. Look on the thread "Reclast Side Effects" where more people share their bad experiences. I'm reading others comments and trying to find a doctor who will at least entertain the thought that it could be the Reclast. Until I find that doctor I won't be able to get any help from a doctor.

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Your story is why I refuse any long term infusion. Of course your symptoms are from the Reclast if you were fine before but now have bone pain. The list of side effects are all possible of course and many don’t experience them, but the ones that are sensitive to a particular drug suffer mightily! I am sensitive to bisphosphonates and had horrible cardiac issues. I asked my doctor how people can take these drugs and he said certain people react badly to certain drugs. You will need to wait this out unfortunately and not take another infusion! Best to stay away from bisphosphonates and try a different class of drugs.

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@newenglandseasons

After the 3rd infusion of reclast i experienced a long period of deep bone pain. This last months and ended as quickly as it started. I have only read occasional mention of others experiencing this side effect. Wondering if there are others out there. I’m needing to consider trying it again.

Jump to this post

So happy to hear that your bone pain has ended. This is what I pray for. It’s been 4 Mo this for me.

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I received my first infusion March 2024. It is now December and I am still having serious stiffness and pain, mostly in my thighs, that I did not have before the infusion. I'm athletic, so I am very aware of my body and how it reacts to exercise. After the infusion, I have tried to keep up my activity level, but I always pay for it with a lot of pain, often so bad that I can barely walk and have to cling to bannisters to go up an down stairs. My husband often has to help me. I take anti-inflammatory meds which help but you just can't take a lot of those. If I don't move, I have only mild discomfort, but I need exercise! My endocrinologist has told me that her patients don't have continued pain, so I felt dismissed. I'm not sure I want to keep getting these injections. If the pain had gone away, I would continue, but it has not.

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@creevesbutler123

I received my first infusion March 2024. It is now December and I am still having serious stiffness and pain, mostly in my thighs, that I did not have before the infusion. I'm athletic, so I am very aware of my body and how it reacts to exercise. After the infusion, I have tried to keep up my activity level, but I always pay for it with a lot of pain, often so bad that I can barely walk and have to cling to bannisters to go up an down stairs. My husband often has to help me. I take anti-inflammatory meds which help but you just can't take a lot of those. If I don't move, I have only mild discomfort, but I need exercise! My endocrinologist has told me that her patients don't have continued pain, so I felt dismissed. I'm not sure I want to keep getting these injections. If the pain had gone away, I would continue, but it has not.

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I continue to follow this thread because of similar symptoms. My leg pain began 2-3 months after my January infusion. It lasted with some variation for about 3 months then stopped. That was encouraging and as I was going on a much anticipated trip, it was welcome. I felt almost normal late July through November then it began again. Nights are the worst. Standing from a sitting position is very uncomfortable and I need to get my leg settled weight wise before walking. I've tried balancing activity with rest with mixed results. The latest onset seems to have been triggered by more than usual activity preparing for guests for Thanksgiving. It's been about 3 weeks of this and I am hopeful it will one day disappear again. It's exhausting. Tylenol doesn't help much and I am reluctant to take too much ibuprofen though sometimes I do several days of it to get on top of things with some short term relief. I will not take again when due in January and have discussed with my doctor who has acknowledged the symptoms some 30-40% have. I hope you will soon find some relief and will continue to follow this thread.

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