Recently diagnosed with osteoporosis and I am terrified

Posted by drterri @drterri, 3 days ago

Hi, I was diagnosed with severe osteoporosis in my spine and hips about a month ago and I am now living in fear. I feel like I'm made of glass and I'm afraid to move. I walk around stiffly, afraid to bend, afraid to twist, stepping carefully to avoid falling, scared to drive or ride in a car in case I get in an accident. Note that I am actually doing everything I need to do (taking care of myself and my house, working full time, going out with friends) but I am doing it all in a constant state of anxiety. Every so often I go down a very dark path, mentally, and decide it would be better to just end it before it gets worse. I have been able to talk myself out of it every time, thankfully, by thinking about how sad my family would be without me. Will I be able to get past this and live my life without fear again? I'm 62 and figure I have another 20+ years on this earth. I have been looking forward to spending my final years peacefully, enjoying life but at this rate, that isn't going to happen. Any positive stories or encouragement would be much appreciated!

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

Learning the importance of the hip hinge movement has been very helpful for me. Stops me from bending forward from the waist. Maybe you already have done so too
Good luck. I agree trying brick house bones snd Melioguide too

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bendammc, yes. The most common choice after Prolia is Reclast, if you doctor agrees. They have the power of the pen. Zometa comes in lower doses of the same bisphosphonate as Reclast.

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Profile picture for oopsiedaisy @oopsiedaisy

@gravity3 I will have a conversation with my endocrinologist in April but her initial suggestion was Prolia. I told her I was uncomfortable with that so she suggested Reclast as another option. I’ve since learned that two shots of Prolia followed by Reclast are sometimes used after Evenity and I might be willing to do that.

I will not go on Prolia for the rest of my life at this point. I am 64 and anything could happen in terms of being able get Prolia regularly for the next 20 years.

Thank you for asking.

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@oopsiedaisy once you start Prolia it’s pretty hard to stop safely.

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Profile picture for gently @gently

bendammc, yes. The most common choice after Prolia is Reclast, if you doctor agrees. They have the power of the pen. Zometa comes in lower doses of the same bisphosphonate as Reclast.

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more clearly (sorry) Prolia is the most common choice of medications after Evenity. Reclast is the second most common choice made. Common "wisdom" is that Evenity should be followed by an antiresorptive because Evenity is called an anabolic, though it is known to be mixed being more antiresorptive at the second half of a year's treatment. So a patient could take any of the bisphosphonates that they can tolerate. Many of our doctors are sold on the Evenity to Prolia sequence. Amgen sells the sequence.
Doctors aren't always receptive to our preferences. If a patient finds out when they finished evenity that their doctor isn't giving them a choice, it is a great scramble to find a new and interactive physician who might prescribe their choice in the short timeframe between medications.
My own doctor, who may be the best doctor on the planet, was absolute that I would have to take Reclast for two years after Forteo. Before I even received the pens, I was looking for a doctor to switch over to at the end of the two years. I consulted with several, found two likely. six months before what would have been my last Forteo injection, I scheduled a follow up with both of them. While I have complete respect for doctors who have opinions different from mine, I even like to consider those opinions carefully, this is how Evenity can become part of the Prolia trap.

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Profile picture for barbyb50 @barbyb50

@drterri
The trainer has experience with older people, and has been open to learning more!
Winter scares me too! We are in St. Louis, and have our share of ice and snow! It is terrifying!
Always glad to answer and share experiences!

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@barbyb50 it yourself some ice cleats for your shoes/boots. I like stabilicers. Some folks like Yaktrax. There are lots of brands. I wear them whenever there is ice around! They take a lot of the stress out of winter!

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Please look up Brickhouse Bones (Dr Linda Moore) She has excellent advice, and provides tons of free YouTube videos on exercises, balancing and diet for osteoporosis. She also has a facebook page. I am 65 , choosing not to take medication. Her videos have made me feel stronger and safe in the activities I do

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You should ask your Dr to do blood tests to your parathyroid, calcium and thyroid levels to make sure those aren't contributing to your osteoporosis.

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Profile picture for daisy17 @daisy17

Can you provide your DEXA score?

Check out New Chapter Bone Strength calcium supplements, which is sourced from algae but I have found it to be cheaper than AlgaeCal (on Amazon).

In addition, I use AlgaeCal Collagen powder with "Fortibone", which is supposed to help bones.

I am 75 and also have severe osteoporosis, worse in my spine. I am also fearful, but so far have not fractured. I am careful with my movements, to keep my spine straight and not twist. I can't take two of the bone building drugs (Forteo and Tymlos) due to parathyroid issues. That leaves Evenity and bisphosphonates. At this time, I have decided not to take either of these medications, due to side effects and absolute risk of bisphosphonates. (Evenity must be followed by a bisphosphonate.).

Go to Facebook and check out Brick House Bones for info on osteoporosis and exercises.

Good luck.

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@daisy17 hi , I’m new to OP, albeit fairly low level….as a CRC patient currently cancer-free as far as I know from recent tests, I really don’t want to take most of the harsh meds, at least for now….so am trying New Chapter because it’s plant-based and 3rd party tested and—important for me—less magnesium (than AlgaeCal) that can cause loose stools….still researching, but my cancer team seems okay with New Chapter for now…some people take separate pills for separate elements rather than a combo supplement…

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Profile picture for nycmusic @nycmusic

@daisy17 hi , I’m new to OP, albeit fairly low level….as a CRC patient currently cancer-free as far as I know from recent tests, I really don’t want to take most of the harsh meds, at least for now….so am trying New Chapter because it’s plant-based and 3rd party tested and—important for me—less magnesium (than AlgaeCal) that can cause loose stools….still researching, but my cancer team seems okay with New Chapter for now…some people take separate pills for separate elements rather than a combo supplement…

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@nycmusic PS I have a PT with background in training OP patients, very helpful.

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Profile picture for daisy17 @daisy17

You should ask your Dr to do blood tests to your parathyroid, calcium and thyroid levels to make sure those aren't contributing to your osteoporosis.

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@daisy17 hi, it may be possible that my cancer therapy accelerated my osteoporosis…it did give me some temporary mild arthritis, which I exercised away, thank heaven ! Cure one thing, maybe cause another..not a bad trade-off for me though.

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