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

Posted by dingus @dingus, Aug 15, 2024

Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?

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brendammc | @brendammc | Oct 31 1:11pm
In reply to @normahorn "@estelle17 Yes, there is evidence lower doses work." + (show)
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@estelle17

Yes, there is evidence lower doses work.

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@normahorn this is what I think might make a difference. Slow and steady right? If I need reclast I’ll have some info. Thanks so much !

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jenkev74 | @jenkev74 | 5 days ago
In reply to @windyshores "I had an hour IV hydration along with my own hydration the day before, day of..." + (show)
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I had an hour IV hydration along with my own hydration the day before, day of and day after. My partial dose was infused over an hour. I took tylenol. I had a fever for 5 days, and some pins and needles for a couple of weeks, but nothing like what you describe. The protocol I described was to address short term effects and protect kidneys, but not sure what can be done for longer term effects. Have you discussed alternatives with your doctor, or treatment options for what you are suffering?

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I had Calcium count 10.5. Had Reclast infusion About week later. A month later still in extreme pain. One of my doctors said I now have PMR.

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msmaz57 | @msmaz57 | 3 days ago

Had my first (and last) Reclast infusion in August 2024 at the urging of my PCP and an Endocrinologist. Was fine for the first 2 months, then began experiencing some migratory hip pain, then started having trouble sleeping on my sides, turns out, I developed Gluteal Tendinopathy, I'm a 68 year old female, I have some mild osteoarthritis in hips and knees, so every Dr I've seen brushes off my pain as "old age" and/or "arthritis". I had been begging my Dr for an MRI since May of this year, to take a look at my hips. Instead she ordered more X-rays, which showed the same mild arthritis that I've had for a few years now with little change. She sent me off to PT, which I've done for 4 months now. The pain continues and is worsening. I was then referred to a Sports Medicine Dr. who injected hydrocortisone into my Bursa Sacs, for the the Gluteal Tendinopathy and injected hyaluronic acid into my hips. Both gave very temporary relief. I asked that Dr to order an MRI and was told "it's not time". A couple of months later, I was referred to an Orthopedic PA and I again begged my referring PCP for an MRI to have ready for the Ortho appt and she did order it but only on the right hip, because that is the side with the most pain and I was having difficulty lifting that leg (really think it should have been a bi-lateral MRI, since the pain migrates between the two hips). The results came in an hour before the Ortho appt and it shows a Labral Tear in the right hip, something you normally see as a result of a sports injury. I have now been given crutches and told to be non-weight bearing on my right hip for 4-5 weeks, to see if the tear will repair itself (from what I'm reading, Labral Tears, do not self-repair). In the meantime, I am putting all my weight on my left leg/hip, which has developed a tight IT band and a tinking sound (like a tight guitar string). To think that I took Reclast to help with osteoporosis and ended up with all these joint (hips and knees), muscle, ligament, tendon, issues and a Labral tear. I am not an athlete. I didn't injure myself before or after the Reclast. There is no other explanation for everything that I'm now experiencing, other than the Reclast. It has severely, negatively affected my life. Prior to the Reclast infusion, I was healthy. Would hike with my kids, walk my dog every day, 2-4 miles per day. Ride my bike. Not any more. Now I am hobbling around on crutches, everyday, while one Dr after the next, kicks the can down the road, while telling me I'm just an older woman with arthritis.

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2 replies
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gently | @gently | 3 days ago

I appreciate your post. I don't know if the following link helps with anything. https://pmc.ncbi.nlm.nih.gov/articles/PMC10404464/#:~:text=Introduction,ray%20absorptiometry%20(DEXA)%20scan.
It could be that you could have the tests that were run on this woman. I wonder how many other Reclast calamities are called old age. I have heard that IV steroids are the most helpful.

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1 reply
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msmaz57 | @msmaz57 | 3 days ago
In reply to @msmaz57 "Had my first (and last) Reclast infusion in August 2024 at the urging of my PCP..." + (show)
Profile picture for msmaz57 @msmaz57

Had my first (and last) Reclast infusion in August 2024 at the urging of my PCP and an Endocrinologist. Was fine for the first 2 months, then began experiencing some migratory hip pain, then started having trouble sleeping on my sides, turns out, I developed Gluteal Tendinopathy, I'm a 68 year old female, I have some mild osteoarthritis in hips and knees, so every Dr I've seen brushes off my pain as "old age" and/or "arthritis". I had been begging my Dr for an MRI since May of this year, to take a look at my hips. Instead she ordered more X-rays, which showed the same mild arthritis that I've had for a few years now with little change. She sent me off to PT, which I've done for 4 months now. The pain continues and is worsening. I was then referred to a Sports Medicine Dr. who injected hydrocortisone into my Bursa Sacs, for the the Gluteal Tendinopathy and injected hyaluronic acid into my hips. Both gave very temporary relief. I asked that Dr to order an MRI and was told "it's not time". A couple of months later, I was referred to an Orthopedic PA and I again begged my referring PCP for an MRI to have ready for the Ortho appt and she did order it but only on the right hip, because that is the side with the most pain and I was having difficulty lifting that leg (really think it should have been a bi-lateral MRI, since the pain migrates between the two hips). The results came in an hour before the Ortho appt and it shows a Labral Tear in the right hip, something you normally see as a result of a sports injury. I have now been given crutches and told to be non-weight bearing on my right hip for 4-5 weeks, to see if the tear will repair itself (from what I'm reading, Labral Tears, do not self-repair). In the meantime, I am putting all my weight on my left leg/hip, which has developed a tight IT band and a tinking sound (like a tight guitar string). To think that I took Reclast to help with osteoporosis and ended up with all these joint (hips and knees), muscle, ligament, tendon, issues and a Labral tear. I am not an athlete. I didn't injure myself before or after the Reclast. There is no other explanation for everything that I'm now experiencing, other than the Reclast. It has severely, negatively affected my life. Prior to the Reclast infusion, I was healthy. Would hike with my kids, walk my dog every day, 2-4 miles per day. Ride my bike. Not any more. Now I am hobbling around on crutches, everyday, while one Dr after the next, kicks the can down the road, while telling me I'm just an older woman with arthritis.

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@msmaz57 Thank you!

REPLY
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dannyandebbie | @dannyandebbie | 2 days ago
In reply to @msmaz57 "Had my first (and last) Reclast infusion in August 2024 at the urging of my PCP..." + (show)
Profile picture for msmaz57 @msmaz57

Had my first (and last) Reclast infusion in August 2024 at the urging of my PCP and an Endocrinologist. Was fine for the first 2 months, then began experiencing some migratory hip pain, then started having trouble sleeping on my sides, turns out, I developed Gluteal Tendinopathy, I'm a 68 year old female, I have some mild osteoarthritis in hips and knees, so every Dr I've seen brushes off my pain as "old age" and/or "arthritis". I had been begging my Dr for an MRI since May of this year, to take a look at my hips. Instead she ordered more X-rays, which showed the same mild arthritis that I've had for a few years now with little change. She sent me off to PT, which I've done for 4 months now. The pain continues and is worsening. I was then referred to a Sports Medicine Dr. who injected hydrocortisone into my Bursa Sacs, for the the Gluteal Tendinopathy and injected hyaluronic acid into my hips. Both gave very temporary relief. I asked that Dr to order an MRI and was told "it's not time". A couple of months later, I was referred to an Orthopedic PA and I again begged my referring PCP for an MRI to have ready for the Ortho appt and she did order it but only on the right hip, because that is the side with the most pain and I was having difficulty lifting that leg (really think it should have been a bi-lateral MRI, since the pain migrates between the two hips). The results came in an hour before the Ortho appt and it shows a Labral Tear in the right hip, something you normally see as a result of a sports injury. I have now been given crutches and told to be non-weight bearing on my right hip for 4-5 weeks, to see if the tear will repair itself (from what I'm reading, Labral Tears, do not self-repair). In the meantime, I am putting all my weight on my left leg/hip, which has developed a tight IT band and a tinking sound (like a tight guitar string). To think that I took Reclast to help with osteoporosis and ended up with all these joint (hips and knees), muscle, ligament, tendon, issues and a Labral tear. I am not an athlete. I didn't injure myself before or after the Reclast. There is no other explanation for everything that I'm now experiencing, other than the Reclast. It has severely, negatively affected my life. Prior to the Reclast infusion, I was healthy. Would hike with my kids, walk my dog every day, 2-4 miles per day. Ride my bike. Not any more. Now I am hobbling around on crutches, everyday, while one Dr after the next, kicks the can down the road, while telling me I'm just an older woman with arthritis.

Jump to this post

@msmaz57
Hopefully time will lessen your symptoms and pain. I’m a male; 17 months out from having my first and last Reclast infusion. I developed severe pain in both shoulders and my left foot. It started out not being able to move without severe pain and discomfort; would wake me 4-5 times a night. I also found the more I made myself move the better throughout my day was; although I would pay for it at night! 17 months out, shoulders do not constantly lock up like they did. My arms now have this tingling pain off and on and left foot flares up randomly. I take no medication for the pain outside extra strength Tylenol as needed and go to physical therapy biweekly. I had zero symptoms prior to the Reclast infusion.
I also reported my issues with the FDA, hopefully others do the same!
I’ll provide their link! Best of luck!
Stay positive!
For on-line reporting to FDA: https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program
For phone reporting: 1-800-FDA-1088.

There is a lot of information online on Reclast side effects- drugs.com, the FDA and Pfizer's own drug insert: https://labeling.pfizer.com/ShowLabeling.aspx?format=PDF&id=4676
In addition to the brief info below, Pfizer has a thorough chart with every side effect and frequency reported. Not sure why doctors don't look at this.

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1 reply
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msmaz57 | @msmaz57 | 2 days ago
In reply to @dannyandebbie "@msmaz57 Hopefully time will lessen your symptoms and pain. I’m a male; 17 months out from..." + (show)
Profile picture for dannyandebbie @dannyandebbie

@msmaz57
Hopefully time will lessen your symptoms and pain. I’m a male; 17 months out from having my first and last Reclast infusion. I developed severe pain in both shoulders and my left foot. It started out not being able to move without severe pain and discomfort; would wake me 4-5 times a night. I also found the more I made myself move the better throughout my day was; although I would pay for it at night! 17 months out, shoulders do not constantly lock up like they did. My arms now have this tingling pain off and on and left foot flares up randomly. I take no medication for the pain outside extra strength Tylenol as needed and go to physical therapy biweekly. I had zero symptoms prior to the Reclast infusion.
I also reported my issues with the FDA, hopefully others do the same!
I’ll provide their link! Best of luck!
Stay positive!
For on-line reporting to FDA: https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program
For phone reporting: 1-800-FDA-1088.

There is a lot of information online on Reclast side effects- drugs.com, the FDA and Pfizer's own drug insert: https://labeling.pfizer.com/ShowLabeling.aspx?format=PDF&id=4676
In addition to the brief info below, Pfizer has a thorough chart with every side effect and frequency reported. Not sure why doctors don't look at this.

Jump to this post

@dannyandebbie I'm sorry to hear that you are also having severe issues after your Reclast infusion. I have yet to contact the FDA, but will do so. Wondering if you have contacted Novartis directly to let them know what you are experiencing? I haven't yet, but will likely do so.

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1 reply
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njhornung | @normahorn | 2 days ago

Found this on pdr.net for Reclast:

Adverse Reactions
Severe
pancytopenia / Delayed / 5.0-9.9
atrial fibrillation / Early / 0.7-3.3
azotemia / Delayed / 2.0-2.0
uveitis / Delayed / 0-1.1
renal tubular necrosis / Delayed / Incidence not known
renal failure (unspecified) / Delayed / Incidence not known
Fanconi syndrome / Delayed / Incidence not known
hyperkalemia / Delayed / Incidence not known
arrhythmia exacerbation / Early / Incidence not known
seizures / Delayed / Incidence not known
angioedema / Rapid / Incidence not known
toxic epidermal necrolysis / Delayed / Incidence not known
bronchospasm / Rapid / Incidence not known
Stevens-Johnson syndrome / Delayed / Incidence not known
anaphylactoid reactions / Rapid / Incidence not known
osteonecrosis / Delayed / Incidence not known
bone fractures / Delayed / Incidence not known
bradycardia / Rapid / Incidence not known
teratogenesis / Delayed / Incidence not known

Moderate
bone pain / Delayed / 3.1-55.0
hypophosphatemia / Delayed / 12.0-51.0
anemia / Delayed / 4.4-33.0
constipation / Delayed / 6.0-31.0
dyspnea / Early / 5.0-27.0
hypocalcemia / Delayed / 0-22.0
hypokalemia / Delayed / 0-15.0
depression / Delayed / 14.0-14.0
dehydration / Delayed / 0.6-14.0
confusion / Early / 7.0-13.0
hypertension / Early / 5.1-12.7
neutropenia / Delayed / 12.0-12.0
hypomagnesemia / Delayed / 0-11.0
hypotension / Rapid / 11.0-11.0
thrombocytopenia / Delayed / 5.0-9.9
dysphagia / Delayed / 5.0-9.9
chest pain (unspecified) / Early / 1.3-9.9
stomatitis / Delayed / 8.0-8.0
palpitations / Early / 2.6-2.6
flank pain / Delayed / 0.6-2.0
hypermagnesemia / Delayed / 2.0-2.0
iritis / Delayed / 0-1.1
proteinuria / Delayed / Incidence not known
hematuria / Delayed / Incidence not known
tetany / Early / Incidence not known
hypernatremia / Delayed / Incidence not known
hyperesthesia / Delayed / Incidence not known
ocular inflammation / Early / Incidence not known
conjunctivitis / Delayed / Incidence not known
blurred vision / Early / Incidence not known
infertility / Delayed / Incidence not known

Mild
nausea / Early / 4.5-46.0
vomiting / Early / 2.0-32.0
arthralgia / Delayed / 5.0-27.3
diarrhea / Early / 5.2-24.0
myalgia / Early / 4.9-23.0
anorexia / Delayed / 1.0-22.0
cough / Delayed / 12.0-22.0
back pain / Delayed / 4.0-18.2
dizziness / Early / 6.1-18.0
insomnia / Early / 15.0-16.0
weight loss / Delayed / 16.0-16.0
abdominal pain / Early / 0.9-16.0
paresthesias / Delayed / 2.0-15.0
anxiety / Delayed / 11.0-14.0
agitation / Early / 13.0-13.0
musculoskeletal pain / Early / 0.4-12.4
hypoesthesia / Delayed / 2.2-12.0
alopecia / Delayed / 12.0-12.0
dyspepsia / Early / 1.7-10.0
infection / Delayed / 5.0-9.9
pharyngitis / Delayed / 8.0-8.0
influenza / Delayed / 7.0-7.0
lethargy / Early / 5.0-5.0
vertigo / Early / 1.3-4.3
rash / Early / 2.2-3.0
hyperhidrosis / Delayed / 2.6-2.6
ocular pain / Early / 2.0-2.0
muscle cramps / Delayed / Incidence not known
pruritus / Rapid / Incidence not known
urticaria / Rapid / Incidence not known
tremor / Early / Incidence not known
dysgeusia / Early / Incidence not known
xerostomia / Early / Incidence not known
weight gain / Delayed / Incidence not known

REPLY
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dannyandebbie | @dannyandebbie | 1 day ago
In reply to @msmaz57 "@dannyandebbie I'm sorry to hear that you are also having severe issues after your Reclast infusion...." + (show)
Profile picture for msmaz57 @msmaz57

@dannyandebbie I'm sorry to hear that you are also having severe issues after your Reclast infusion. I have yet to contact the FDA, but will do so. Wondering if you have contacted Novartis directly to let them know what you are experiencing? I haven't yet, but will likely do so.

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@msmaz57
I have not, might you have a link to Novartis? I’m willing to let whomever know, this can be serious, especially for older and not as healthy people!

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laurie2111 | @laurie2111 | 11 hours ago

I had reclast 2 years ago. I am now dealing with the long term affects
Reclast stays on your bones for years. I had my last 3 bottom teeth extracted on 12/24. The gums would not heal. The bones would to reabsorb. 11 months later talked to my endocrinologist. He said probably the reclast still on my jaw bone. Put me on forteo. Best drug for severe issues related to osteoporosis. Gums are healed. Only took about a month and a half. Ready for my dentures.. he is going to keep me on it for 2 years just because of the side effects from reclast.

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