59 and severe osteopororsis

Posted by xia @xia, Sep 23 4:14pm

I found out last week I have os pretty bad esp in my spine. My hips were just at -2.5 but my spine was closer to -4.0. I am really terrified of my future and mortality. I cant take fosomax or any of those drugs due to esophageal strictures and eosinophilla, and oral abscesses. I have had IBD since 18 the ulcerative colitis form, developed graves disease of the thyroid at 36, and have some connective tissue disease trying to rear its head. I had a uterine ablation 14 years ago that stopped all periods so i never really knew when I went into menopause.

My doctor says it looks like i went in about 8 or 9 years ago, but i still get hot flashes. At 59 im in shock that i have such a bad spine, im terrified really, and terrified of whats to come. I have been told I can only stay on tymlos 2 years, then they have to swap me to something else, and that list is short. I will receive my first tymlos pen on thursday, im scared to start it. What happens when im only 61 and cant stay on it? Do i just lose bone till it kills me? No bisphosphates for me , should i even start treatment this young or wait? Im scared.

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You mentioned you don't want to take a bisphosphates, such as Foxamax or Reclast, however I've been told that treatment with Tymlos (abaloparatide) should "generally be followed by an antiresorptive agent, such as a bisphosphonate, to maintain the benefits gained in bone mass and strength, as bone density can rapidly deteriorate after stopping Tymlos." So, if you don't want to ever take a bisphosphate, you will lose any gains after taking Tymlos.

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I'm so sorry to hear what you have gone through. I'm also uncertain about making a decision on taking meds or doing everything i can naturally. nutrition, exercise, lose weight supplements. I cancelled my appt. tomorrow for IV treatment of Reclast. I'm going for naturally try to get this under control for now. I'm finding we have to make those choices and i wish I could help you more. I'm going to avoid the side effects of the meds. for now.

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Profile picture for veve1964 @veve1964

I'm so sorry to hear what you have gone through. I'm also uncertain about making a decision on taking meds or doing everything i can naturally. nutrition, exercise, lose weight supplements. I cancelled my appt. tomorrow for IV treatment of Reclast. I'm going for naturally try to get this under control for now. I'm finding we have to make those choices and i wish I could help you more. I'm going to avoid the side effects of the meds. for now.

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@veve1964

Remember that the list includes POSSIBLE side effects. Side effects are not inevitable. Depends on the individual.

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When you are 61 and can't stay on your current drug, they will put you on a new drug. You can only stay on the drugs for how long they did testing on it.

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Profile picture for dvargo @dvargo

When you are 61 and can't stay on your current drug, they will put you on a new drug. You can only stay on the drugs for how long they did testing on it.

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@dvargo

Could you explain a bit more about your experiences. Perhaps I have missed it.

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Profile picture for veve1964 @veve1964

I'm so sorry to hear what you have gone through. I'm also uncertain about making a decision on taking meds or doing everything i can naturally. nutrition, exercise, lose weight supplements. I cancelled my appt. tomorrow for IV treatment of Reclast. I'm going for naturally try to get this under control for now. I'm finding we have to make those choices and i wish I could help you more. I'm going to avoid the side effects of the meds. for now.

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@veve1964
Veve1964, if you have osteopenia , go ahead an try the natural route, but if your DEXA is -4.00 in your spine, please consider taking the Reclast. This was my score last year, but I decided to skip the meds and their side effects and instead take supplements (Algae Cal) and do bone-strengthening exercises. I did, with my doctor's blessing. I was already in excellent shape, which is why people couldn't believe I had osteoporosis. Well, eight months later, I experienced multiple compression fractures in my spine. I had never felt such pain in my life. They have healed and I feel better, but my mobility is now limited, and I've lost 1 1/2 inches of height.
If someone had told me this could happen to me, I would have taken the bone meds.

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Profile picture for isabella5 @isabella5

@veve1964
Veve1964, if you have osteopenia , go ahead an try the natural route, but if your DEXA is -4.00 in your spine, please consider taking the Reclast. This was my score last year, but I decided to skip the meds and their side effects and instead take supplements (Algae Cal) and do bone-strengthening exercises. I did, with my doctor's blessing. I was already in excellent shape, which is why people couldn't believe I had osteoporosis. Well, eight months later, I experienced multiple compression fractures in my spine. I had never felt such pain in my life. They have healed and I feel better, but my mobility is now limited, and I've lost 1 1/2 inches of height.
If someone had told me this could happen to me, I would have taken the bone meds.

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@isabella5 Yes. It is very difficult to reverse severe osteoporosis without medication. Better than -3.0, I'd say yes, see what else you can do. If you're -3.5, -4.0, the odds on you fixing that without meds aren't great.

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Profile picture for gravity3 @gravity3

@dvargo

Could you explain a bit more about your experiences. Perhaps I have missed it.

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@gravity3 not my experience just what I have read. I think they keep switching out the drugs.

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Profile picture for dvargo @dvargo

When you are 61 and can't stay on your current drug, they will put you on a new drug. You can only stay on the drugs for how long they did testing on it.

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@dvargo The treatment for osteoporosis is very complicated and nuanced. The decision to change a medication is based on many factors. These include established protocols and sequencing based on ongoing research with the determinant factors being optimized results with minimal negative side effects, and the individual patient's response as evidenced by labs, imaging, and self-reporting. A medication is not stopped because testing and research on it have stopped. Testing is ongoing.

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Profile picture for dvargo @dvargo

When you are 61 and can't stay on your current drug, they will put you on a new drug. You can only stay on the drugs for how long they did testing on it.

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@dvargo, hi. I see what you mean.
In practice most osteoporosis patients take multiple medications to escape or avoid negative effects.
Some medications are approved with restrictions on the number of years of use.
Evenity was approved with a 1 year limit, which has expanded because as they track people using the drug, they are finding out that the cardiac risk applies to people with prior cardiac issues. Some osteoporosis patients are taking a successful second year of Evenity.
Health problems with Prolia weren't evidenced in the clinical trials. There was no restriction on years of use. Ten years of tracking have indicated that for the majority of patients Prolia is safe for ten years. After eleven years of tracking the indication will probably show that it is safe for most people for eleven years.
Forteo and Tymlos were restricted in use to two years because rodent trials indicated a bone cancer risk. Tracking users for many years seems to have disproven the risk. The black box warnings have been removed from both drugs. While package inserts advise careful selection of patients for longer term use.
Bisphophonates went the other way. Originally without restriction, general use has indicated certain risks. The advice (not restriction) is for 3 to 5 years of use.
In my situation I will likely be on Forteo with no other osteoporosis drug.

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