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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Profile picture for gently @gently

I appreciate your post. I don't know if the following link helps with anything. https://pmc.ncbi.nlm.nih.gov/articles/PMC10404464/.
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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@gently Thanks for this. I had done some research on NIH a couple of months back. They need to determine more testing to be done before they encourage or give Reclast infusions, because once it's in the body, there's no turning back. Even stopping it (meaning not getting the 2nd of what would have been 3 infusions), really doesn't make any difference. It seems to get into the body and stay in the body. I read one case where a woman had 1 Reclast infusion, then very similar reaction to mine and 12 years later, was still reacting. That's after 1 infusion.

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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
So sorry for your sufferings with Reclast! Your story touches all of us that were prescribed this medicine, and had trust in our doctors. I suspect that the whole situation with medicines for OP reflects little attention that is given in medicine and society to people of older age with the logic that illness and sufferings belong to this age.
Best wishes to you, and please inform about further developments.

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Profile picture for melia7 @melia7

@msmaz57
So sorry for your sufferings with Reclast! Your story touches all of us that were prescribed this medicine, and had trust in our doctors. I suspect that the whole situation with medicines for OP reflects little attention that is given in medicine and society to people of older age with the logic that illness and sufferings belong to this age.
Best wishes to you, and please inform about further developments.

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@melia7 Thank you for the kinds words. Unfortunately, I think you are correct in what you are saying here. It's so disheartening to be told it's just old age and arthritis, when you know in your heart it was brought on by a drug that was supposed to help.

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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 researched connecting with Novartis
To report SUSPECTED ADVERSE REACTIONS, contact Novartis Pharmaceuticals Corporation at 1-888-669-6682 or FDA at 1-800-FDA-1088 or http://www.fda.gov/medwatch. Reclast is indicated for treatment of osteoporosis in postmenopausal women.
Note! Navartis no longer handles Reclast; it is now Sandoz pharmaceuticals at 800-525-8747 San doz pharmaceuticals acquired Reclast

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Just had my first infusion a few days ago. Did the whole hydration/Tylenol/ antihistamine prep beforehand, during, and after. Now have pretty severe tinnitus and starting to have bone pain and dizziness as well. Things I'm considering to help, some per this thread: chlorophyll, dexamethasone, red light therapy, activated charcoal. Will report back!

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Profile picture for melia7 @melia7

@msmaz57
So sorry for your sufferings with Reclast! Your story touches all of us that were prescribed this medicine, and had trust in our doctors. I suspect that the whole situation with medicines for OP reflects little attention that is given in medicine and society to people of older age with the logic that illness and sufferings belong to this age.
Best wishes to you, and please inform about further developments.

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@melia7 need better medical research for OP…most meds are older, no great new ones without side effects for many (if not most people )....finally getting my strength back after dealing with CRC, doing well on PT and internist doesn’t want to stop my hard-earned progress, so I’m doing a very good combo supplement, doing PT , exercise and walking more…also some dietary adjustments to help bones… wishing you and all here good health !

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Profile picture for christut @christut

Just had my first infusion a few days ago. Did the whole hydration/Tylenol/ antihistamine prep beforehand, during, and after. Now have pretty severe tinnitus and starting to have bone pain and dizziness as well. Things I'm considering to help, some per this thread: chlorophyll, dexamethasone, red light therapy, activated charcoal. Will report back!

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@christut you described one of the great issues with OP meds….the need to take so many other meds to deal with side effects…as we age, there are some problems that can happen with all these drug interactions !

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Profile picture for dingus @dingus

Wow! Thanks everybody for your comments. I had the same response from my doctor, "It's not the Reclast. Go see your primary care doc." My primary care doc just gives me a blank stare. How can you get help when no doctor will at least entertain the thought that it might be the Reclast!! I'm going to another endocrinologist on Monday. I'll see how that goes. In the meantime I'm going to try walking, a heating pad and chlorophyll. And, yes, where do you find chlorophyll? Does it require a prescription?

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@dingus My dermatologist rescued me twice. First, 2 doctors couldn't tell me why my joints around my hips and shoulders hurt so bad. 3 months went by. I saw my dermatologist for something else, but commented about my painful arthritis. He asked if my muscles hurt and then said, "Polymyalgia Rheumatica". I was on prednisone for 2 years and it ate my bones up, but I couldn't function from the pain without it. After that I was diagnosed with osteoporosis. I started Reclast infusions. As long as I was on prednisone, I had no side effects. By the 3rd year I was off prednisone. When I took the Reclast for the third time, I started having side effects. The worst was a terrific itching on my legs from the calf to the ankle. So bad, I couldn't sleep. I went to my dermatologist for that. He did the research and found that 11% of
patients on Reclast report itching legs. The capillaries were inflamed and it wasn't a rash, it was petechia. My internist ordered me a 6 day (I think) prescription of prednisone and it cleared up. My dermatologist suggested the side effects would increase with on-going infusions. My rheumatologist agreed. So, on to Prolia. Not taking that anymore either. Sticking with Pilates, calcium, walking with weights, etc. Good Luck to us all.

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Profile picture for normajean77 @normajean77

I had very severe reactions to Reclast. The FDA insert said to expect some joint pain 2-3 days after, which I had. Then, things were ok for about a week and a half. Then, one morning, I woke up in severe joint pain ALL OVER! It was so bad, I could not get out of bed. Called my endocrinologist and of course, she said she’s never heard of this. I read the FDA Drug insert for Reclast and yes, there were a percentage of patients with this severe joint pain following the IV Infusion. All I can say is I will never, ever take that infusion again!
I believe each one of you saying you had pain after this infusion. It’s poisonous!

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@normajean77 I had a reclassified infusion in August I had the infusion at 8:00 am and at 7:00 that same evening I didn’t feel the best so I layed down and within minutes I hurt so bad I had to get up got to the stairs and had to ride my moms chair lift down. My daughter had to call the ambulance because I couldn’t stand or walk. I was in the hospital for 3 days went for a follow up with my doctor and she didn’t know anything about the severe side effects. I called the doctor that prescribed the infusion and he had his nurse call me and question how severe my pain really was. I told her it felt like death and I would let my bones deteriorate before I ever had it again. I still have pain from it and it sucks!! When will it go away? When the drug is out of my system? Or is it just going to keep happening?

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Please, please report these atrocious adverse reactions to the FDA at MedWatch (/www.fda.gov/safety/medical-product-safety-information/medwatch-forms-fda-safety-reporting) or by calling 1-800-FDA-1088.

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