1. < Osteoporosis & Bone Health

Positive vibes ONLY thread

Posted by nannygoat5 @nannygoat5, 3 days ago

POV: I’m often left stressed and scared after reading this forum. It occurred to me that most of the people posting here have had bad experiences and wonder if people who have good experiences aren’t on a forum? I was listening to a podcast and the person casually threw out that she had OP and had a year of a certain medication NBD all good. She’s not a spokesperson for drugs and it was good to hear. If 75% of women have osteoporosis/penia surely there are good results out there? My PT, Dr and my endo were all like why are you so upset? You’ll be fine! But after I spend time here I’m faced with gloom and doom and feel awful. Hit me with your good stuff!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

kristie2 | @kristie2 | 2 days ago
In reply to @JustinMcClanahan "Hello @nannygoat5, This is a great discussion to get started. You make a great point about..." + (show)
@JustinMcClanahan

Hello @nannygoat5,

This is a great discussion to get started. You make a great point about sometimes finding only negative results despite there being positive results out in the world as well.

I'd like to invite @monkhhi to this conversation. @monkhhi started a discussion based on their positive Evenity experience after prolonging treatment because of being scared off by reading the experiences of others:

"Evenity worked for me: Why I chose medication for osteoporosis"
- https://connect.mayoclinic.org/discussion/evenity-worked-for-me/

I'd also like to invite @neesie0159, @kristie2, @gravity3 and @pami who all shared their positive experiences as well.

@nannygoat5, if you are comfortable sharing - do you have a positive experience to share with your osteoporosis journey - A successful lifestyle change or medication experience?

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I have been on this thread and just shared my experience with Prolia so far.

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deborahla | @deborahla | 2 days ago

I too have been a little discouraged by the negative experiences about med side effects, etc. However I do understand it is important to know the + and negatives of treatments. I also realize from seeing "customer reviews" on other products that many times people post problems only (no issues or good results are left unsaid). Having said that, I have also read many positive reports here. I agree with @samclembeau that there needs to be more research for better meds. I think that will happen. For now I am glad there are some good drugs that help and hope to see more in the future. For myself, I have posted several times so many may know this. But I was reluctant to start drugs but felt I should due to my severe osteoporosis. I did start Evenity 3 months ago, no side effects. I feel great. I plan to continue to Reclast (I am still researching this). I have an appt. with my Rheum doctor in 2 weeks and I have a lot of questions to ask him thanks to this forum.

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1 reply
cincy | @cincy | 2 days ago
In reply to @osteoresearch "Why is everyone busting nannygoats chops? She has every right to start their own thread on..." + (show)
@osteoresearch

Why is everyone busting nannygoats chops? She has every right to start their own thread on a certain topic. If you have something positive to add then do it. If not, don’t. Just move on to a different thread that better suits your experiences.

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No one is busting nannychops.True facts are being stated..The OP journey is constant treading water..as we all continue to journey along to find the best positive outcome for our lives.

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nannygoat5 | @nannygoat5 | 2 days ago
In reply to @deborahla "I too have been a little discouraged by the negative experiences about med side effects, etc...." + (show)
@deborahla

I too have been a little discouraged by the negative experiences about med side effects, etc. However I do understand it is important to know the + and negatives of treatments. I also realize from seeing "customer reviews" on other products that many times people post problems only (no issues or good results are left unsaid). Having said that, I have also read many positive reports here. I agree with @samclembeau that there needs to be more research for better meds. I think that will happen. For now I am glad there are some good drugs that help and hope to see more in the future. For myself, I have posted several times so many may know this. But I was reluctant to start drugs but felt I should due to my severe osteoporosis. I did start Evenity 3 months ago, no side effects. I feel great. I plan to continue to Reclast (I am still researching this). I have an appt. with my Rheum doctor in 2 weeks and I have a lot of questions to ask him thanks to this forum.

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Thank you! I’m wondering if the people with positive results just don’t feel the need to be on forums?! It’s like when people go to doctor google? My DIL (an endo) and MY endo honestly felt you only hear bad results. Appreciate your post.

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1 reply
kshea2 | @kshea2 | 2 days ago
In reply to @oopsiedaisy "My good news is that I have not fractured again since my vertebral compression fracture 16..." + (show)
@oopsiedaisy

My good news is that I have not fractured again since my vertebral compression fracture 16 months ago. The percentage of people who fracture within 12 months is 10 to 20% and 31% fracture again within 5 years.

I did a long stint of back rehab to strengthen my back muscles and am 98% pain-free now and getting stronger and feeling better every day.

I had really lost all hope when I was diagnosed with a compression fracture and envisioned a life of pain and fragility. I'm happy to say that I feel much more positive about the future.

I made many lifestyle changes including improving my diet as much as I could, adding a few more supplements, and educating myself from top to bottom on osteoporosis in menopausal women.

My foray into anabolics didn't work out but I am willing to wait and see and try them again in the future.

I realize there are a lot of negative stories here but I am grateful to those who share them because it gives me a complete picture of a range of experiences. I never assume I will face the same issues because my situation (as are all of ours) is unique.

A positive attitude is definitely helpful because stress is a factor in how we do with this disease.

Hoping to hear more positive stories. Good idea for a thread.

Edited to add: I view my fracture as positive because it drove me to really examine what was going on in my body. Prior to that, I completely ignored my situation and dismissed my osteoporosis as something I didn't need to consider.

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@oopsiedaisy I feel the same as you about the fracture I experienced 5 months ago! At the time it was an awful experience, but it gave me the kick in the butt i needed to really examine my health. I’ve made many changes to address my osteoporosis and gut health and feel i’m on a good path for the future.

I’m so thankful to have found the Mayo Connect forum as I have learned so much and value hearing others real-live experiences.

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deborahla | @deborahla | 2 days ago
In reply to @nannygoat5 "Thank you! I’m wondering if the people with positive results just don’t feel the need to..." + (show)
@nannygoat5

Thank you! I’m wondering if the people with positive results just don’t feel the need to be on forums?! It’s like when people go to doctor google? My DIL (an endo) and MY endo honestly felt you only hear bad results. Appreciate your post.

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Yes. I think that is the case. I know with myself, with most of my transactions in life they are positive and I don't feel the need to post anything about that.

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gravity3 | @gravity3 | 2 days ago
In reply to @nannygoat5 "I’m in the beginning of my journey! I’m a carrot not a stick person lol -..." + (show)
@nannygoat5

I’m in the beginning of my journey! I’m a carrot not a stick person lol - so I’d like to hear good outcomes. I feel one’s mental health is important to overall health and healing. Thanks for asking!

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Hi Nanny.

I've had fosomax, forteo, evenity and now one injection of Prolia. No noticeable side effects from any of them on my osteoporosis journey. I've had positive outcomes with all but the best were from Evenity. Good luck on your bone journey. At 77 I am grateful for these medications. I've had no osteoporosis related fractures along the way.

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lizzie12 | @lizzie12 | 2 days ago

63 yo, dx'd with Osteoporosis at age 61. Once the initial shock wore off I am thankful that my OBGYN referred me for a Dexa Scan as my PCP said not needed until age 65 if no fractures. On Reclast since 9/2024, fortunately with no lasting side effects-hydrated, took Tylenol . Started eating healthier and joined an Osteoporosis exercise with an inspirational group of women, some in their 80's and 90's who are a great example to keep motivated. I certainly don't love having Osteoporosis, wish I didn't, but writing about and reading other positive posts in helpful. So much knowledge on this forum. I've learned a lot.

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monkhhi | @monkhhi | 2 days ago

I was just like you! Read my long post about my experience, lol. I had great success with Evenity. My osteo doc couldn’t believe my improvement. I’m now on Prolia and doing fine.

I spent a lot of time researching and reading before I started medication. In the beginning I thought I could fix it myself. It took a while before it sank in that I was already doing heavy exercise, running, lifting, walking, taking supplements, and following a very healthy diet. I still ended up with severe (-3.5 or so) osteoporosis in my lumbar spine. What I can’t change is my genetics and my aging.

The NPs were a great source at my infusion center. They see a lot of patients on these meds and rarely see patients that have issues. I also would talk to other patients while I was there about their experiences.

I think I said before, I’m a risk vs benefit type of thinker. According to my provider, I was at a very low risk of a side effect. However, I was at a very high risk of a compression fracture and anyone on this site that has had one can tell you how painful that can be. My provider said that a fracture would be life changing for me. I wouldn’t be able to do any of the things that I like to do.

So at the end of the day, I decided to follow the recommendations of my provider that has medical education, training and has experience managing a large caseload of patients. Take a deep breath and good luck with your decision!

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nannygoat5 | @nannygoat5 | 2 days ago
In reply to @gravity3 "Hi Nanny. I've had fosomax, forteo, evenity and now one injection of Prolia. No noticeable side..." + (show)
@gravity3

Hi Nanny.

I've had fosomax, forteo, evenity and now one injection of Prolia. No noticeable side effects from any of them on my osteoporosis journey. I've had positive outcomes with all but the best were from Evenity. Good luck on your bone journey. At 77 I am grateful for these medications. I've had no osteoporosis related fractures along the way.

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Love hearing this!

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