1. < Osteoporosis & Bone Health
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Fearing risks of Prolia

Posted by slr1 @slr1, Jan 6 8:55pm

I am going to my pcp tomorrow morning to discuss whether to start Prolia or Jubbonti after getting dexa scan results showing my osteoporosis has gotten worse. I took Ralaxifene for the last 2 years and it didn't help. I have researched these 2 drugs and have read a ton of bad side effects from patient reviews and I am really nervous to try! After taking Boniva just one time in the past, I felt like I was ran over by a truck for 3 days and I refused to ever take a biphosphate again. I am thinking about not starting a new drug and exercising more. Any input is much appreciated!

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jdh5 | @jdh5 | Apr 29 11:28am
In reply to @sungal "There are lots of comments on this thread, which talk about terrible side effects with Prolia...." + (show)
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There are lots of comments on this thread, which talk about terrible side effects with Prolia. I suspect that, if you've had problems with Prolia, you're more likely to speak up. I don't in any way want to belittle those comments, but I do want to provide some balance. I've been on Prolia for three years now without problems and with good results. My sister and a friend, who are both physicians, have been on Prolia for much longer than I have. They too have had no side effects and good results.
I hope you will have our same results, if you decide to take it.

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@sungal
I took oone dose with terrible side effects, fatigue, worse sinus problems, itching, worse anxiety. My Dr took me off , not to get second shot and increase calcium and Vit D

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dcasares48 | @dcasares48 | Apr 30 9:08am
In reply to @jdh5 "@sungal I took oone dose with terrible side effects, fatigue, worse sinus problems, itching, worse anxiety...." + (show)
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@sungal
I took oone dose with terrible side effects, fatigue, worse sinus problems, itching, worse anxiety. My Dr took me off , not to get second shot and increase calcium and Vit D

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I have been on Prolia for about 3 years now and really had bone aches and pains for about 4 months after my first injection. It's been smooth sailing ever since with improvements.

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mary2249 | @mary2249 | May 1 7:27am
In reply to @sungal "There are lots of comments on this thread, which talk about terrible side effects with Prolia...." + (show)
Profile picture for sungal @sungal

There are lots of comments on this thread, which talk about terrible side effects with Prolia. I suspect that, if you've had problems with Prolia, you're more likely to speak up. I don't in any way want to belittle those comments, but I do want to provide some balance. I've been on Prolia for three years now without problems and with good results. My sister and a friend, who are both physicians, have been on Prolia for much longer than I have. They too have had no side effects and good results.
I hope you will have our same results, if you decide to take it.

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@sungal thank you for this info.
You are so right about all the negative replies. So nice to get a positive one.

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lisaberkowitz | @lisaberkowitz | May 30 10:34am
In reply to @sup7401 "Hi, RN here. I tried alendronate , which helped initially...went off of it with better results...." + (show)
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Hi, RN here.
I tried alendronate , which helped initially...went off of it with better results.
few yrs later much worse dexa results.. I know exactly your worries...me too
I researched, asked others' opinions, and drove myself nuts...prolia vs others...I didnt want to take any...
a nurse friend told me after 2 years of zero side effects...fer scans were much better with zero side effects...so I tried it...
have had zero side effects... scans much improved..
everyone is different, nothing guaranteed...I figured I would either break a bone or have a stroke over worrying...... I gave myself a day to make a decision... and stop all the googling and opinions...Good luck, I know its hard

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@sup7401
Hi! I was on Evenity for 11 months, Dexa slighly improved. Fractured my RT shoulder on Evenity after 4 months. Endochronologist is recommending Prolia, but I'm very frightened by side effects & compromised autoimmune isses (already have thyrpid disease, celiac & fibromyalgia).

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sue225 | @sue225 | May 31 7:36am

I have been on Prolia for almost nine years. Due for my next Jubonti injection in June. Only negative for me an increase in cholesterol which was a pre-existing issue. That is being not entirely successfully controlled with Repatha.
Will probably be on Prolia for many more years. Have lots of g.i problems so bisphosphonates are not possible. And Reclast sounds dreadful.

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daisy17 | @daisy17 | May 31 12:27pm
In reply to @lisaberkowitz "@sup7401 Hi! I was on Evenity for 11 months, Dexa slighly improved. Fractured my RT shoulder..." + (show)
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@sup7401
Hi! I was on Evenity for 11 months, Dexa slighly improved. Fractured my RT shoulder on Evenity after 4 months. Endochronologist is recommending Prolia, but I'm very frightened by side effects & compromised autoimmune isses (already have thyrpid disease, celiac & fibromyalgia).

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@lisaberkowitz How did you fracture your shoulder? Was it due to a fall which might not have been related to your osteoporosis? It would be helpful to know your age and DEXA score.

You need to take another medication after stopping the Evenity to maintain your bone density gains. If you don't want Prolia, could the doctor recommend another drug to lock in your gains?

Regarding the Prolia, ask your doctor how long they want you to stay on it and what drug you will take afterwards. Prolia must be followed by something to lock in your gains and prevent fractures.

I also have fibromyalgia and am taking LDN low-dose naltrexone, which has helped me tremendously with pain reduction and insomnia. I've written about it under the Fibromyalgia support group. In addition, some studies show it can help osteoporosis. https://www.sciencedirect.com/science/article/pii/S0024320519302395

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lisaberkowitz | @lisaberkowitz | May 31 1:29pm
In reply to @daisy17 "@lisaberkowitz How did you fracture your shoulder? Was it due to a fall which might not..." + (show)
Profile picture for daisy17 @daisy17

@lisaberkowitz How did you fracture your shoulder? Was it due to a fall which might not have been related to your osteoporosis? It would be helpful to know your age and DEXA score.

You need to take another medication after stopping the Evenity to maintain your bone density gains. If you don't want Prolia, could the doctor recommend another drug to lock in your gains?

Regarding the Prolia, ask your doctor how long they want you to stay on it and what drug you will take afterwards. Prolia must be followed by something to lock in your gains and prevent fractures.

I also have fibromyalgia and am taking LDN low-dose naltrexone, which has helped me tremendously with pain reduction and insomnia. I've written about it under the Fibromyalgia support group. In addition, some studies show it can help osteoporosis. https://www.sciencedirect.com/science/article/pii/S0024320519302395

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@daisy17 I was 68 when I slipped & fell & fractured my rt humerus walking the dog in Sept after 6 months on Evenity shots since 4/25. Neuro surgeon recommended Evenity, since my my bones weren't strong enough for another fusion suegery. Endo had me on Fosimax for 2 yrs. Last shot was in March, since infusion center closed. 2024 Dexa was -2.7 on forearm & -2.6 on hip. New Dexa last wk is -2.1 forearm & -2.5 femur. Endo wants me on Prolia, but I have hashitomo's thyroiditis, celiac, fibromyalgia & alopecia. Worried about autoimmune issues. Side effects sound awful too:( I'm speaking to my neurosuegeon on Mon. Thank you!!!!!

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debhatchell | @debhatchell | Jun 1 9:50am
In reply to @lisaberkowitz "@daisy17 I was 68 when I slipped & fell & fractured my rt humerus walking the..." + (show)
Profile picture for lisaberkowitz @lisaberkowitz

@daisy17 I was 68 when I slipped & fell & fractured my rt humerus walking the dog in Sept after 6 months on Evenity shots since 4/25. Neuro surgeon recommended Evenity, since my my bones weren't strong enough for another fusion suegery. Endo had me on Fosimax for 2 yrs. Last shot was in March, since infusion center closed. 2024 Dexa was -2.7 on forearm & -2.6 on hip. New Dexa last wk is -2.1 forearm & -2.5 femur. Endo wants me on Prolia, but I have hashitomo's thyroiditis, celiac, fibromyalgia & alopecia. Worried about autoimmune issues. Side effects sound awful too:( I'm speaking to my neurosuegeon on Mon. Thank you!!!!!

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@lisaberkowitz Oh you poor kid. I'll be 63 with T scores of -4.0. I have 2 more Evenity injections and then must decide between Prolia (my doctor wants this for ne), or Reclast. I have hypothyroidism too and the autoimmune thing weighs heavily on me. I don't want a bunch of new unretractable issues because he's got stock in Amgen. 😭. Please update us here about your visit.

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lisaberkowitz | @lisaberkowitz | Jun 2 5:48am
In reply to @debhatchell "@lisaberkowitz Oh you poor kid. I'll be 63 with T scores of -4.0. I have 2..." + (show)
Profile picture for debhatchell @debhatchell

@lisaberkowitz Oh you poor kid. I'll be 63 with T scores of -4.0. I have 2 more Evenity injections and then must decide between Prolia (my doctor wants this for ne), or Reclast. I have hypothyroidism too and the autoimmune thing weighs heavily on me. I don't want a bunch of new unretractable issues because he's got stock in Amgen. 😭. Please update us here about your visit.

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@debhatchell Neurosurgeon suggested seeing a metabolic bone specialist, do I have an appt in mid July at Mt. Sinai. Specaking to my endo today sbout what to do until my appt to lock in gains. Osteoporosis is complicated to navigate.

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lisaberkowitz | @lisaberkowitz | Jun 2 6:35am

Explore Evenity with your doctor. Insurance will only cover it if it's done at a hospital infusion center, not in a doctor's office. Found that out myself, since I was told my insurance wouldn't cover it.

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