Reclast side effects

Posted by dingus @dingus, Aug 15 2:24pm

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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@dannyandebbie

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!

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@dannyanddebbie
I have been praying for you every morning since I first read your post. God is at work! I will continue to pray for total healing and good rest! Nancy

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@neshomaker123

@dannyanddebbie
I have been praying for you every morning since I first read your post. God is at work! I will continue to pray for total healing and good rest! Nancy

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Thank you so much for the prayers, Nancy. That's what we all need more than anything right now, the Great Healer.

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@dingus

I have so many thoughts, but every time I post something I get shut down. I need to get a tooth pulled right now. There's a crack in it. I'm scheduled for Dec 2nd and I'm scared to death of osteonecrosis. I asked my Rheumatologist about it and he said the oral surgeon can "work around it." I told that to the oral surgeon and he looked at me like I was nuts. There is no "work around." There is no definitive answer. And they just keep pumping out the Reclast. The drug company gets rich and we get osteonecrosis.
Talk to as many doctors as you can, Sue. Try to find the best answer. I for one, and I'm sure everyone on this post will be praying for you...and for me, too, I hope. I even asked the oral surgeon if I could just leave it alone for awhile. Of course the answer to that was "no."

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Ooooh... On Nov. 26th I will have three teeth pulled and two bone grafts put in. I had one done last year, and my perio was incredibly relieved to hear I was not on any of the jaw-necrosis drugs. I had one tooth pulled last year with a bone graft and it all went incredibly well, healed perfectly and fast. My femur break also healed well and fast. I'm 86 and have brittle teeth that tend to crack all the way through to the root lately. I think I'm unlikely to build new bone at this point in my life - though possibly these recent events show otherwise - and I'm working on muscle now. And awaiting better scans.

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Hi Stuffy, It's interesting that your perio was relieved that you weren't on any jaw-necrosis drugs. Makes me think that osteonecrosis is pretty common. I'm scheduled for my tooth extraction on December 2nd and am kind of worried about it. The oral surgeon hasn't been very encouraging. Where is the bed side manner when you need it. Ha! But it sounds like you are doing well. Glad to hear that your femur break healed well and fast. So now work on the muscles to keep everything working well. Best of luck to you.

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@dingus

I have so many thoughts, but every time I post something I get shut down. I need to get a tooth pulled right now. There's a crack in it. I'm scheduled for Dec 2nd and I'm scared to death of osteonecrosis. I asked my Rheumatologist about it and he said the oral surgeon can "work around it." I told that to the oral surgeon and he looked at me like I was nuts. There is no "work around." There is no definitive answer. And they just keep pumping out the Reclast. The drug company gets rich and we get osteonecrosis.
Talk to as many doctors as you can, Sue. Try to find the best answer. I for one, and I'm sure everyone on this post will be praying for you...and for me, too, I hope. I even asked the oral surgeon if I could just leave it alone for awhile. Of course the answer to that was "no."

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Thank you and I hope your dental appt. goes smoothly. Prayers for all.
Peace and every good.
Sue

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@sbauer4

Thank you and I hope your dental appt. goes smoothly. Prayers for all.
Peace and every good.
Sue

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Thanks so much, Sue. With all you guys praying for me how can I miss. Mary

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I plan to order "Great Bones", today. I am very excited to read this book since I read the previous comments. I took Prolia for one year and had severe muscle and bone pain after the second injection. I then took Reclast for one year, because I was told that I could not just stop Prolia without taking Reclast to protect me from the side effects of stopping Prolia. It is now two years later and I had a Dexa scan and my Osteoporosis is worse by 20% from what it was before I took Prolia. I recently had five of my ribs fracture and I am at high risk for fracture without impact in my hip and spine. Apparently I must take another "bone medication", but my endocrinologist has said that the drug I take is up to me. I don't know what drug to take. I have sought a second opinion from the head of Endocrinology and he said he will do blood work after another month, to help decide what drug I should take. He wants to give my ribs more time to heal. I do not know what drug to take. I don't want to take any of them, but I also do not want to have any more fractures. Before I took Prolia I asked for the drug that had the least side effects. That did not turn out to be what I experienced. Any advice from my fellow friends with Osteoporosis? Thank you !!!!!

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@hlp123

I plan to order "Great Bones", today. I am very excited to read this book since I read the previous comments. I took Prolia for one year and had severe muscle and bone pain after the second injection. I then took Reclast for one year, because I was told that I could not just stop Prolia without taking Reclast to protect me from the side effects of stopping Prolia. It is now two years later and I had a Dexa scan and my Osteoporosis is worse by 20% from what it was before I took Prolia. I recently had five of my ribs fracture and I am at high risk for fracture without impact in my hip and spine. Apparently I must take another "bone medication", but my endocrinologist has said that the drug I take is up to me. I don't know what drug to take. I have sought a second opinion from the head of Endocrinology and he said he will do blood work after another month, to help decide what drug I should take. He wants to give my ribs more time to heal. I do not know what drug to take. I don't want to take any of them, but I also do not want to have any more fractures. Before I took Prolia I asked for the drug that had the least side effects. That did not turn out to be what I experienced. Any advice from my fellow friends with Osteoporosis? Thank you !!!!!

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@hlp123 so sorry this happened to you. And you only took Prolia for one year, followed by the suggested Reclast,

I hope you have a good endocrinologist. Not sure what if any studies show about this sequence. Chances are the doc will try Forteo, Tymlos or Evenity.

Someone posted good results for Evenity after Prolia, though effectiveness was reduced. The same might be true for Evenity after Reclast but again, someone on this forum posted good results for that too.

"Great Bones" says that Forteo and Tymlos aren't effective right after Prolia (due to rebound) but we would be interested to hear if they are possible in your situation. I know Tymlos is reputed to help with healing since I took it right after spinal fractures.

I am so glad that you got the head of Endo involved. Since you have fractures after (because of?) treatment, perhaps the doctors will take extra care in their recommendation. Let us know!

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@hlp123

I plan to order "Great Bones", today. I am very excited to read this book since I read the previous comments. I took Prolia for one year and had severe muscle and bone pain after the second injection. I then took Reclast for one year, because I was told that I could not just stop Prolia without taking Reclast to protect me from the side effects of stopping Prolia. It is now two years later and I had a Dexa scan and my Osteoporosis is worse by 20% from what it was before I took Prolia. I recently had five of my ribs fracture and I am at high risk for fracture without impact in my hip and spine. Apparently I must take another "bone medication", but my endocrinologist has said that the drug I take is up to me. I don't know what drug to take. I have sought a second opinion from the head of Endocrinology and he said he will do blood work after another month, to help decide what drug I should take. He wants to give my ribs more time to heal. I do not know what drug to take. I don't want to take any of them, but I also do not want to have any more fractures. Before I took Prolia I asked for the drug that had the least side effects. That did not turn out to be what I experienced. Any advice from my fellow friends with Osteoporosis? Thank you !!!!!

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@hlp123
In your situation I would want to take Tymlos to build the strongest bone fastest.
The anabolic drugs Forteo and Tymlos are the two that add normal bone and correct bone architecture for strength.
Those ribs can be so painful. Tymlos or Forteo would decrease the time it take for them to heal.
You had good advice with taking Reclast, but Prolia's rebound is fierce and with some people Reclast, the strongest bisphosphonate, is not always strong enough to prevent the multiple fractures that Prolia can cause when you stop taking it.
I've only taken Forteo and while I am completely happy with the drug I consider Tymlos a stronger medicine as it i includes a protein that Forteo doesn't contain.

I can't think of any advantage in waiting to give the ribs more time to heal, when you could take medication that would speed their healing.
Knowing the cause of your osteoporosis would impact choice.
Bless your bones.

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