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Osteoporosis drugs

......Not forgetting the Royal Osteoporosis Society https//theros.org.uk
 
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Outlier said:
Anybody got any input on these.
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Like all things, it depends where you are on the osteoporotic scale of things - osteopaenic through to multiple pathological fractures. If you have had a pathological fracture did it heal well? Have you had DEXA scans? If so, are the stable or degrading? And of course, the perpetual kicker - age and gender.

How is your diet for calcium rich elements and what is your Vitamin D score running at? Is that with or without a supplement?

The patient information leaflet for Alendronic Acid (often the first line treatment) is usually quite informative. If you don’t have it to hand, it’s certainly available online.

Sorry for the gazillions questions, but each is important in terms of your needs or otherwise.
 
Thank you for your thoughtful and detailed response. I have had no fractures, despite a very bad fall while in hospital, but had a pelvic scan which apparently revealed the problem, no scale or percentage given, but the scan was the result of high calcium and vit. D. in my blood which apparently leaches out bone density. GP prescribed vit. D. supplement - I used to take a D3 and K2 but stopped at diagnosis of too much D -and went to prescribe calcium, so I raised this discrepancy and he said he wouln't prescribe the calcium then. Makes no sense to me but I have an appointment in a month to discuss, and need to know what to ask to get the best value from it. Meanwhile I read the info leaflets that came with the meds and am very very reluctant to take them. I have been in a wheelchair for over 6 months, so load-bearing exercise is an issue, previously was very strong and fit. My diet is great - I'm a nutrition geek, so no lack there. but I am an elderly female, so tick a lot of the wrong boxes. My GP is good and we have a good relationship, and I don't want to ruin this by refusing meds, however it's my body my future, and my decision what I put in it. Ideally, I would like to have a scan in a year's time to see what if anything has changed. If I took the meds there would be no checks for 3 years. If anyone else has lived experience I would appreciate them sharing it.
 
Outlier said:
Thank you for your thoughtful and detailed response. I have had no fractures, despite a very bad fall while in hospital, but had a pelvic scan which apparently revealed the problem, no scale or percentage given, but the scan was the result of high calcium and vit. D. in my blood which apparently leaches out bone density. GP prescribed vit. D. supplement - I used to take a D3 and K2 but stopped at diagnosis of too much D -and went to prescribe calcium, so I raised this discrepancy and he said he wouln't prescribe the calcium then. Makes no sense to me but I have an appointment in a month to discuss, and need to know what to ask to get the best value from it. Meanwhile I read the info leaflets that came with the meds and am very very reluctant to take them. I have been in a wheelchair for over 6 months, so load-bearing exercise is an issue, previously was very strong and fit. My diet is great - I'm a nutrition geek, so no lack there. but I am an elderly female, so tick a lot of the wrong boxes. My GP is good and we have a good relationship, and I don't want to ruin this by refusing meds, however it's my body my future, and my decision what I put in it. Ideally, I would like to have a scan in a year's time to see what if anything has changed. If I took the meds there would be no checks for 3 years. If anyone else has lived experience I would appreciate them sharing it.
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I have a borderline diagnosis of osteoprosis. I say borderline because of the joints scanned a couple are broderline, but osteopaenic (meaning they aren't as dense as they ideally might be), and two consultants literally rowed about it. (I found that but quite funny. It struck me as w***y waving to me!)

I was prescribed Alendronic Acid remotely and picked up one script. I took one tablet, but no more.

I didn't have any horrendous reaction to it, but it was a faff - taking it very early morning, then remain (sitting) upright for quite a period afterwards, when I'd rather be sleeping.

I have had several discussions about it with my Endo who says Osteoporosis is terrifying to him. I explained how I didn't enjoy taking the tablets and in any case there was a chance (read the PIL) that a side effect is essentially brittle bones and fractures. I expressed I'd take my chances.

He didn't try to dissuade me of my course of action, but does ensure I have scans every couple of years. Should I suffer a pathalogical fracture or a mechanical fracture that is slow to heal, I'll have to go through my decision look again.

I do try to remain active, and nourish myself well, but the rest is in the lap of the gods.

Whatever you decide for yourself, good luck with it all.
 
Outlier said:
Anybody got any input on these.
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If you decide to go on Alendronic acid get very regular checks.
I was left on it far too long, I now know nice recommend only 2 years.
I was left on them for 20 .
I got 3 fractures in left femur, 1 in my foot and a big fracture in my right femur all at the same time as the drug damaged all my bones .
I had to have emergency treatment with a major operation before it had devastating results for me .
I am now 2 years on from having to re learn to walk, a wheelchair, 2 crutches and now down to one crutch .
I think it’s they say this is very rare , but when it happens it’s awful.

I am not trying to scaremonger , just saying be careful .
 
Rosieboo100 said:
If you decide to go on Alendronic acid get very regular checks.
I was left on it far too long, I now know nice recommend only 2 years.
I was left on them for 20 .
I got 3 fractures in left femur, 1 in my foot and a big fracture in my right femur all at the same time as the drug damaged all my bones .
I had to have emergency treatment with a major operation before it had devastating results for me .
I am now 2 years on from having to re learn to walk, a wheelchair, 2 crutches and now down to one crutch .
I think it’s they say this is very rare , but when it happens it’s awful.

I am not trying to scaremonger , just saying be careful .
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Oh my. That's a long time to be on Alendronic Acid without adequate follow-ups! I do hope you're on a better trajectory now.
 
My GP was going to leave me for 3 years before checkup. I don't like the sound of this at all. I'm going to ask him for an annual check to see how much my bones deteriorate during that time with me not taking the meds. I hope he plays ball. I don't see the wisdom in taking meds that thin my bones and hammer my guts in order to stop.....my bones thinning. Could be it's due to me being in a wheelchair. I need to know.
 
Outlier said:
My GP was going to leave me for 3 years before checkup. I don't like the sound of this at all. I'm going to ask him for an annual check to see how much my bones deteriorate during that time with me not taking the meds. I hope he plays ball. I don't see the wisdom in taking meds that thin my bones and hammer my guts in order to stop.....my bones thinning. Could be it's due to me being in a wheelchair. I need to know.
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I don't think it's so much they thin the bones, more that the bones CAN become brittle.

It doesn't happen to everyone, and from memory it isn't all that common, but whilst it's fine to consider the statistical likelihood, it doesn't help the poor person who draws the short straw
 
@Outlier - whilst I mainly speak with my Endo about my osteopaenia/porosis, I am also under Metabolic Sciences who deliver the DXA scans and offer opinions.

Why not ask your GP for a referral to Metabolic Sciences. They are more likely to have the specialist information you want - especially as your mobility is already compromised.
 
This is my experience of osteoporosis which I hope will be useful. I discovered I had it back in the 1990s when I had a DEXA scan at the Twin Research Unit in London, I would have been around 40 and apparently a perfect candidate for osteoporosis, being slim and had had a hysterectomy and one ovary removed. My doctor prescribed alendronic acid and I was assured I would be on them for life. I had regular DEXA scans with Twin Research, all showing my T-scores were low. I was on the tablets for several years but as I was getting pains in my thighs I asked the doctor if I could have a "holiday" from them and it is now recommended to have a holiday every five years. While I was off them my T-scores got better! Unfortunately, in 1995 I slipped in the garden and heard my femur crack before I hit the ground. With a metal rod inserted I was put back onto the tablets for a few months but then it was discovered that the consultant was now sure that it was the osteoporosis tablets that had caused it - a bisphosphonate induced atypical femur fracture. They had also found a tiny crack in my other femur and wanted to put another rod in it but decided to wait and thankfully it started to heal on its own. My records now show that I must NEVER be given the medication again, even the injections. I am now just taking calci-d. As well as the broken femur over the years I have got six compressed fractures in my spine and falls have broken my shoulder blade, collarbone and six ribs and broken my elbow resulting in more metawork. My warning to people taking alendronic acid and the like is to read any information about it and especially about atypical fractures as the medication doesn't "strengthen" bones as I was told but hardens what is there which makes them brittle so even stepping off a kerb, coughing or just bendng over can cause a break. Also, if you are taking the tablets, don't ignore any pains and weakness in your thighs as that is what I had shortly before I broke my femur. As for my other health problems, I have had diabetes since 1995 and was also diagnosed with MDS, a type of blood cancer in 2017.
 
Gloucestergirl said:
This is my experience of osteoporosis which I hope will be useful. I discovered I had it back in the 1990s when I had a DEXA scan at the Twin Research Unit in London, I would have been around 40 and apparently a perfect candidate for osteoporosis, being slim and had had a hysterectomy and one ovary removed. My doctor prescribed alendronic acid and I was assured I would be on them for life. I had regular DEXA scans with Twin Research, all showing my T-scores were low. I was on the tablets for several years but as I was getting pains in my thighs I asked the doctor if I could have a "holiday" from them and it is now recommended to have a holiday every five years. While I was off them my T-scores got better! Unfortunately, in 1995 I slipped in the garden and heard my femur crack before I hit the ground. With a metal rod inserted I was put back onto the tablets for a few months but then it was discovered that the consultant was now sure that it was the osteoporosis tablets that had caused it - a bisphosphonate induced atypical femur fracture. They had also found a tiny crack in my other femur and wanted to put another rod in it but decided to wait and thankfully it started to heal on its own. My records now show that I must NEVER be given the medication again, even the injections. I am now just taking calci-d. As well as the broken femur over the years I have got six compressed fractures in my spine and falls have broken my shoulder blade, collarbone and six ribs and broken my elbow resulting in more metawork. My warning to people taking alendronic acid and the like is to read any information about it and especially about atypical fractures as the medication doesn't "strengthen" bones as I was told but hardens what is there which makes them brittle so even stepping off a kerb, coughing or just bendng over can cause a break. Also, if you are taking the tablets, don't ignore any pains and weakness in your thighs as that is what I had shortly before I broke my femur. As for my other health problems, I have had diabetes since 1995 and was also diagnosed with MDS, a type of blood cancer in 2017.
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Gloucestergirl, thank you for replying to this thread. You, tragically, have experienced exactly what I feared when I really, really thought about Alendronic Acid. My response of "I've decided to take my chances" to my Endo when he asked how I was getting along was pretty much to accept my feelings, but "reassure" me I could change my mind at any time, if I so chose.

I have what I consider to be a complicating factor of a historic period of living with anorexia in my late 20s/early 30s. I really put my body through it, but I can't change that.

When I added this to the discussion with the Endo, he agreed my T-score results were likely influenced by that period of frankly, brutal malnutrition.

I remain content with my decision.

I'm so, so sorry that you have gone through what you have, and will remind myself that thankfully your experience isn't tooooo common, although to you and anyone experiencing it it must feel flippin' awful.

I do hope moving forward you won't be blighted by further fractures or impacts. You have had more than your fair share already.
 
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