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Old 03-04-2019, 03:53 PM
 
1,096 posts, read 968,038 times
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Here's a site which I have found to be extremely educational. There are many helpful and knowledgeable people, including health professionals, who participate in the forums.

https://www.inspire.com/groups/natio...is-foundation/

I'm going in for a DEXA next month and I'm not optimistic. I was borderline between osteopenia and osteoporosis two years ago.

I've tried to do everything right but sometimes it's out of our hands. I walk 3-4 miles a day, do other bone-friendly exercises and eat properly. So far I've not been on any meds. I'm very leery of them as I tend to have severe reactions to many meds of all sorts. There are many and varied side effects of all of the osteoporosis meds (well, with all meds of course).

My other concern is with dental work. My regular dentist, as well as the endodontist and oral surgeon I've had the "pleasure" of using, will not work on anyone who is on any of the osteoporosis meds. So it might be a good idea to check in with your dentist/s before you begin treatment for your osteoporosis. There can be direct correlation between the osteoporosis meds and jaw issues. You'll find lots of information on that and much more at the link above.

Hope that helps.
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Old 03-04-2019, 06:18 PM
 
Location: on the wind
5,830 posts, read 2,282,857 times
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Quote:
Originally Posted by Good4Nothin View Post
I have never heard of an MD mentioning side effects. They believe what the drug companies say -- the side effects, from any drug, are very rare.
This is anecdotal. You can't in all fairness claim it as holding true for all prescribing providers. In my experience every MD who's prescribed a drug for me has explained potential side effects, usually by how likely/common they are. What they haven't done is predict exactly which ones I would end up with.
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Old 03-04-2019, 10:45 PM
 
Location: Aliso Viejo, CA
363 posts, read 765,917 times
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No experience with this drug myself - but my now 87-year-old mom has severe osteoporosis and was put on a two-year course of Forteo after experiencing three separate sacral insufficiency fractures and spinal compression fractures from (1) turning over in bed (2) hitting a minor pothole in the road while riding in a car and (3) getting out of the car and twisting the wrong way !

These three fractures occurred in 2012 and 2013 before she started Forteo - and she has had no further fractures since then -- it worked like a charm for her - apparently it was extremely successful in bone-building and strengthening. She is now being given Prolia and so far has noticed no side effects from it.

Forteo had some scary and significant possible side effects but our family weighed the possibility of those side effects against the almost certainty that she would continue to get fractures from these insignificant minor events -- and it was an easy choice to do whatever we could for her to avoid more surgical interventions for recurrent fractures. We were fortunate that she didn't experience any obvious side effects from Forteo either.

I'm not sure if this information is helpful or not - I know the drug sheets have to list every possible side effect that *could* occur - and it's always a tradeoff for what one hopes to gain by taking it compared to what could or will happen if one doesn't. We are aware that side effects from Forteo could still occur in the future but again it was a situation where we KNEW my mom would keep getting fractures if no Forteo - we accepted the risk of whatever could happen way down the road in order to have a safer more peaceful situation for her right then.

Again we are so fortunate that the good effects of it are still continuing !

All the best to you as you are sorting out what to do.

Last edited by Freebird; 03-04-2019 at 10:53 PM..
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Old 03-04-2019, 10:56 PM
 
Location: Living rent free in your head
29,798 posts, read 12,664,917 times
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Quote:
Originally Posted by movinon View Post
My other concern is with dental work. My regular dentist, as well as the endodontist and oral surgeon I've had the "pleasure" of using, will not work on anyone who is on any of the osteoporosis meds. So it might be a good idea to check in with your dentist/s before you begin treatment for your osteoporosis. There can be direct correlation between the osteoporosis meds and jaw issues. You'll find lots of information on that and much more at the link above.
Hope that helps.
That's true, the condition is called osteonecrosis of the jaw. Dental work that traumatizes the jaw, like extractions can increase the risk. It's more common in people with bone cancer who take prolia intravenously than it is in people who take it for osteoporosis but there's still a risk associated with it.
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Old 03-05-2019, 04:12 AM
 
Location: Minnesota
471 posts, read 157,729 times
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I have been on Prolia for five years and ten shots. I have had very few side effects (at least that I am aware of).

I didn't take this drug lightly, and only went on any osteoporosis drug after many years of being diagnosed with osteoporosis. I was diagnosed at age 34 in 2006, just one year after a total hysterectomy and loss of both ovaries (my biggest regret ever is losing those healthy ovaries in my prime). Even though I was put on HRT right after my surgery, I had a terrible time with it and also wanted a baseline dexa scan to monitor my bones since I had other risk factors (thyroid meds for decades, being small boned and low normal weight, family history, very short lifetime exposure to menstruation and natural hormones as first period was at age 16 due to ballet training and being underweight). I was shocked that my scores were -3.2 spine and -1.8 hips. I did take Miacalcin which is an older class of osteoporosis drug that is no longer given. I took that for a year along with calcium, vitamin D, lots of weight bearing exercise, hrt, and put on some weight. My scores only improved to -3.0 spine and -1.2 hip in two years. I went off Miacalcin due to side effects but still took hrt and supplements and consistent exercise. however, I fell into anorexia nervosa in 2008 and that went on for six years of being very underweight. I also was vegan for most of that time. And my exercise addiction took off. By 2014 my dexa scores plummeted to -3.8 spine and -1.8 hip.

It was at that point that I had to take drastic measures to do something. I was only 42 years old and my bones hurt all the time and I had multiple rib injuries, though no fractures found on plain xrays. I had been on many supplements and full dose Vivelle Dot hrt patch for years but they did not stop my bone loss. I did put on 22 lbs to get healthier, but also went on Prolia because it is VERY hard to rebuild bone in menopause. Supplements will not work unless you have a deficiency in vitamin D, calcium, magnesium etc. Because I was such a high risk (from both surgical menopuase AND eating disorder plus genetics etc) and had already tried other means, AND I was trying to put on weight medically and could not risk interference of stomach upset issues that come along with oral bisphosphonates like Fosomax or Boniva, Prolia was an option for me and I qualified for it.

My dexa scores improved to -2.5 spine and -1.0 hip after four years of Prolia. I am still on it and likely will be until something else comes along that is better. There is no agreement on time limit with how long you can be on prolia which is a little scary. I'm not thrilled about being on it. It does mess with bone resorption, and can be tricky if you have bone injuries. I am going on over 3 months of dealing with a simple stress fracture in tibia and stress reaction in right foot that will not heal and is very very frustrating. No one seems to know for sure if Prolia is to blame, or my low bone density itself, or my inability to refrain completely from exercise to let everything heal.

I will warn that once you are on Prolia, you can not just stop it without huge risks. There are now MANY reports of people stopping prolia and bone density scores plummeting to below what they were before going on prolia to begin with, within mere months. Unlike bisphosphonates, Prolia does not stay in the bones for long, so there is a huge rebound effect when you come off, and there are multiple reports of people having multiple fractures from this very quick rebound effect. Therefore there are now warnings not to come off it or to switch immediately to another osteoporosis drug to prevent this happening. If for any reason i have to come off it (insurance issues, stops working etc) I will likely have to get on something else immediately. it's not an ideal situation.

Though I have had few side effects, because of the risk of coming off it, the expense of being on it, and how it messes with bone resorption, it is not something I would take lightly. I'd try everything else first and start more conservatively unless you are at high risk of fracture. I know people who it has helped tremendously who already fractured previously and have not fractured since being on it for years. But others seem to have debilitating side effects. I have been lucky so far but i am suspicious of how hard it is to recover from even simple bone damage due to injury, though I eat very healthy and now maintain a healthy weight since 2014 etc. If I could go back, knowing what I know now, I would maybe have tried Reclast before Prolia as the risk of rebound effects is less, though that is a once yearly infusion you are stuck with. Never an easy choice. My osteoporosis was not from natural aging. If it had been and I were much older, I would not have considered Prolia unless I were fracturing constantly.
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Old 03-05-2019, 01:36 PM
 
2,663 posts, read 637,585 times
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Quote:
Originally Posted by TwoByFour View Post
Osteoporosis has a range of severities. The lowest severity may be treatable with calcium supplements but the highest severity is not since there has been too much bone loss for the body to recover. My wife has very bad osteoporosis which has resulted in five fractures of her spine. It was extremely painful for her and she had to be super cautious of everything as she could break other bones easily. She just finished a treatment with Forteo and is now on Prolia. Forteo is the only drug which grows new bone in severe cases of osteo. It has helped DW tremendously. But you cannot take it more than 2 years, and after that the goal is to prevent the new bone from being lost with use of Prolia.

My recommendation to you is to find out how serious your osteoporosis is. You mentioned breaking a hip - did that happen from osteo? If so, it sounds serious. If you have a serious case of it, I would get a second opinion of the treatment. Prolia prevents bone loss but won't grow new bone material. I would not take bis-phosphanates. Those do have bad side effects.

Can you explain how it has helped your wife?
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Old 03-09-2019, 07:39 AM
 
Location: Coastal Georgia
36,223 posts, read 44,390,745 times
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There are other choices of medication. Iíd ask the doctor, why this one instead of others? I take Boniva, once a month pill and havenít had any ill effects.
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Old 03-09-2019, 02:51 PM
 
1,088 posts, read 504,845 times
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Quote:
Originally Posted by gentlearts View Post
There are other choices of medication. Iíd ask the doctor, why this one instead of others? I take Boniva, once a month pill and havenít had any ill effects.
This too has bad reviews....you are one of the lucky ones.
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Old 03-10-2019, 11:27 AM
 
3 posts, read 837 times
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Default Osteoporosis meds

I've been having DEXA scans for years, and was originally diagnosed with osteopenia. The last scan finally put me into the category of osteoporosis. Like many of you, I've read horrible reviews and side effects with all of the osteoporosis medications. Due to an ongoing, chronic foot issue and sore shoulder, strenuous exercise is difficult. I also have IBS and many of the more healthful foods aggravate my digestive system. I felt like I had to try something to improve my situation.

After much trepidation and deliberation, I decided to try the once weekly Fosomax (I take the generic form but can't remember the name of it.) I've been on it more or less for a year. A few times I didn't take it for a couple of weeks because I felt it irritated my stomach, but I've been pretty consistent the past few months in taking it, and have another DEXA in April. I'm sure there won't be much (if any) positive change, and my rheumatologist has suggested the once-yearly Reclast delivered intravenously. Reviews and experiences I've read about with Reclast have been horrible as well. I feel that at least if the weekly drug causes problems, I can always stop taking it. However, with Reclast, once it is in your system, it's there for a year. Very scary and hard to know what to do.
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Old 03-10-2019, 12:06 PM
 
Location: Southern California
21,630 posts, read 7,326,775 times
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Quote:
Originally Posted by marikat View Post
I've been having DEXA scans for years, and was originally diagnosed with osteopenia. The last scan finally put me into the category of osteoporosis. Like many of you, I've read horrible reviews and side effects with all of the osteoporosis medications. Due to an ongoing, chronic foot issue and sore shoulder, strenuous exercise is difficult. I also have IBS and many of the more healthful foods aggravate my digestive system. I felt like I had to try something to improve my situation.

After much trepidation and deliberation, I decided to try the once weekly Fosomax (I take the generic form but can't remember the name of it.) I've been on it more or less for a year. A few times I didn't take it for a couple of weeks because I felt it irritated my stomach, but I've been pretty consistent the past few months in taking it, and have another DEXA in April. I'm sure there won't be much (if any) positive change, and my rheumatologist has suggested the once-yearly Reclast delivered intravenously. Reviews and experiences I've read about with Reclast have been horrible as well. I feel that at least if the weekly drug causes problems, I can always stop taking it. However, with Reclast, once it is in your system, it's there for a year. Very scary and hard to know what to do.
I was told probably 20 yrs ago osteopenia, and I have no clue where I am now as I don't do anymore tests. I've been taking much higher doses of magnesium for many years...so I'm probably good with the bones.

This info may interest you.

https://www.healthline.com/health/os...ive-treatments
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