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.

@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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Bless you! Hope you continue to do well!

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@lizzie12

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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Thanks for sharing! Praying you continue to do well!

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@monkhhi

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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Great news that your meds are for you!

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@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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@nannygoat5 You can read my entire response on the “Evenity worked for me” discussion:

https://connect.mayoclinic.org/discussion/evenity-worked-for-me/

In short, I did one year of Evenity injections with no side effects other than tenderness at the site of the injection. That tenderness was gone within 24 hours. After the one year on Evenity.

I then had an infusion of Reclast. Again, no side effects at all. Some people do experience flu-like symptoms following a Reclast infusion but I did not.

I think you and others are correct. Many people who have good experiences on meds including osteoporosis medication do not post. I think you are wise to consider the options and discuss these all thoroughly with your doctor. Do you see an endocrinologist for osteoporosis?

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@naturegirl5

@nannygoat5 You can read my entire response on the “Evenity worked for me” discussion:

https://connect.mayoclinic.org/discussion/evenity-worked-for-me/

In short, I did one year of Evenity injections with no side effects other than tenderness at the site of the injection. That tenderness was gone within 24 hours. After the one year on Evenity.

I then had an infusion of Reclast. Again, no side effects at all. Some people do experience flu-like symptoms following a Reclast infusion but I did not.

I think you and others are correct. Many people who have good experiences on meds including osteoporosis medication do not post. I think you are wise to consider the options and discuss these all thoroughly with your doctor. Do you see an endocrinologist for osteoporosis?

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Yes! I see a PT my internal medicine Dr. and, recently, an Endo. My DIL is also an Endo and I’ve asked her a few questions. I love my DIL and we get along great so I don’t go to that well too often (they have busy lives and tiny kids). I’m still in the phase of “wow! How did this happen?” Phase lol

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Btw, I found a lot of positive information on @gotbuffbones on Instagram. Rebekah is actually at a national symposium in DC working on osteoporosis related issues. She’s been on the news talking about exercise and the need to lower the testing age etc. she actually called me to chat! She’s a great advocate! I suggest looking her up on instagram! She’s quite young and has osteoporosis and is a real warrior!

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@nannygoat5

Btw, I found a lot of positive information on @gotbuffbones on Instagram. Rebekah is actually at a national symposium in DC working on osteoporosis related issues. She’s been on the news talking about exercise and the need to lower the testing age etc. she actually called me to chat! She’s a great advocate! I suggest looking her up on instagram! She’s quite young and has osteoporosis and is a real warrior!

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@nannygoat5 You are so fortunate to have a daughter-in-law who you have a good relationship with and she's an endocrinologist too! Well, not your endocrinologist but you can get good information from her.

When I was first diagnosed with osteopenia I was in my mid-40's and perimenopausal. I was very active and had been weightlifting for more than 10 years at that point in time. I had the same reaction as you. Me? My bone density should be in the normal range. Well, it wasn't and it continued to go down over time until eventually I was in the osteoporosis range in my early 60's. My mother had osteoporosis so that certainly put me at risk.

Thank you for the information about @gotbuffbones. Do you know why she has developed osteoporosis at such a young age?

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I’m happy with the results I’ve gotten from 2 annual infusions of Reclast - my numbers are edging up. I thought the flu side effect each time was not bad.
What I like about Reclast is it also should help prevent breast cancer metastasis to the bone. My DCIS in the breast has not gone anywhere and hope to keep it that way.

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@naturegirl5

@nannygoat5 You are so fortunate to have a daughter-in-law who you have a good relationship with and she's an endocrinologist too! Well, not your endocrinologist but you can get good information from her.

When I was first diagnosed with osteopenia I was in my mid-40's and perimenopausal. I was very active and had been weightlifting for more than 10 years at that point in time. I had the same reaction as you. Me? My bone density should be in the normal range. Well, it wasn't and it continued to go down over time until eventually I was in the osteoporosis range in my early 60's. My mother had osteoporosis so that certainly put me at risk.

Thank you for the information about @gotbuffbones. Do you know why she has developed osteoporosis at such a young age?

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Yes I’m lucky my DIL is an endo but years ago I wished she was a dermatologist ha! I’m not sure why @gotbuffbones developed it so early but she has so much to share. I’m so fit - like you- so it was a shock. I believe my mother had it but I’m uncertain about that (she did have a few breaks, however).

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@triciaot

I’m happy with the results I’ve gotten from 2 annual infusions of Reclast - my numbers are edging up. I thought the flu side effect each time was not bad.
What I like about Reclast is it also should help prevent breast cancer metastasis to the bone. My DCIS in the breast has not gone anywhere and hope to keep it that way.

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Woo hoo! Glad it’s working for you!

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