Biphosphonate

Posted by seapen @seapen, Sep 22 7:11am

What has your experience taking biphosphonate been like?

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I started on alendronate weekly tablets at 67. I should have started years before but I was worried about stomach issues, lots of things irritate my stomach, and waited. I was then in mild osteoporosis. I stopped after 7 doses because I was getting bloated, mild reflux, and some stomach irritation. By the time I got my stomach back to normal I had been diagnosed with breast cancer so it was 2 years later that I started Reclast, infusion. I’ve had 2 yearly infusions. No real side effects. But I will be very careful next time to make sure I don’t schedule it too close to another procedure that might affect my kidney function. My eGFR dropped quite a bit after the second Reclast- I just happened to find out because I was having a CT scan one week later and they ran a kidney function beforehand because the contrast from the CT can put a load on the kidney. Alls well, my eGFR recovered 5 weeks later and my doctor feels that the kidney function drop and recovery was pretty normal with an infusion.
As far as the jaw issues - I had talked with my dentist before taking alendronate and he said that he personally had never had a patient with jaw issues from the med. He said the he thought it is mainly an issue if there is existing bone problems at the jawline, or if a tooth needed to be pulled. He thought the main issue was that the jaw bone may not recover/rebuild as expected. He did not think it was an issue for me at that time.
Reclast has kept my bones from further loss, and I’m now back up in osteoporosis level. My endocrinologist said she thought I would need 3 Reclast infusions. I’m going to see if I can delay the 3rd infusion as Reclast could maybe be done in 2 years instead of one. Especially because I’m on Tamoxifen which helps protect my bones, too.

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I was on alendronate 70mg once a week for nearly four years with no side effects. My spine remained the same at -3.9, which is fairly severe, and my hip worsened slightly from osteopenia to -2.7. I am now taking the bone-builder Forteo (it hasn't even been a month yet). In my opinion the decision whether to start on a bone builder vs BPH should take the severity of your osteoporosis into account as well as any previous fractures (I'd had two wrist breaks, one from standing height) but I was put on a BPH with no discussion of any other treatment possibilities, and I didn't know enough at the time to ask. It's true one needs to go on to a BPH (or Prolia, which itself would have to be followed by a BPH if you want to come off of it) to hold your gains from the bone builder, after which one could potentially take a drug holiday. I'm a proponent of treat to target--once my bones get to a place where my fracture risk is considerably lessened, I want to stop the drugs. To me even mild osteoporosis is acceptable, though of course I'd like to get into osteopenia if not normal. It will mean continued monitoring to see what kind of shapes my bones are in and possibly drugs again at some point.

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@cat1203

I was on alendronate 70mg once a week for nearly four years with no side effects. My spine remained the same at -3.9, which is fairly severe, and my hip worsened slightly from osteopenia to -2.7. I am now taking the bone-builder Forteo (it hasn't even been a month yet). In my opinion the decision whether to start on a bone builder vs BPH should take the severity of your osteoporosis into account as well as any previous fractures (I'd had two wrist breaks, one from standing height) but I was put on a BPH with no discussion of any other treatment possibilities, and I didn't know enough at the time to ask. It's true one needs to go on to a BPH (or Prolia, which itself would have to be followed by a BPH if you want to come off of it) to hold your gains from the bone builder, after which one could potentially take a drug holiday. I'm a proponent of treat to target--once my bones get to a place where my fracture risk is considerably lessened, I want to stop the drugs. To me even mild osteoporosis is acceptable, though of course I'd like to get into osteopenia if not normal. It will mean continued monitoring to see what kind of shapes my bones are in and possibly drugs again at some point.

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Did your Dr suggest any reasons that your DEXA scans didn't improve after taking alendronate for almost four years? Thanks.

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@ripley

Did your Dr suggest any reasons that your DEXA scans didn't improve after taking alendronate for almost four years? Thanks.

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No, other than the GP was concerned that perhaps I hadn't been getting enough calcium, which I don't think was the case. The rheumatologist said at least it didn't get worse so in a way it was a win, but we could try to do better. I don't think any osteo drug works for all people all the time. I think some drugs just don't work for some people. I just wish I hadn't waited 4 years to find out.

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@cat1203

No, other than the GP was concerned that perhaps I hadn't been getting enough calcium, which I don't think was the case. The rheumatologist said at least it didn't get worse so in a way it was a win, but we could try to do better. I don't think any osteo drug works for all people all the time. I think some drugs just don't work for some people. I just wish I hadn't waited 4 years to find out.

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If you’re taking an SSRI it can counteract the bone Med.

SSRIs cause bone loss and doctors don’t tell you that. Maybe they don’t know

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@tmarkow

If you’re taking an SSRI it can counteract the bone Med.

SSRIs cause bone loss and doctors don’t tell you that. Maybe they don’t know

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First time I've heard this. But I'm not taking an SSRI.

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Thank you for letting me know that SSRIs cause bone loss. Dr Google confirms that. I have been taking Prozac for 24 years.

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@cat1203

No, other than the GP was concerned that perhaps I hadn't been getting enough calcium, which I don't think was the case. The rheumatologist said at least it didn't get worse so in a way it was a win, but we could try to do better. I don't think any osteo drug works for all people all the time. I think some drugs just don't work for some people. I just wish I hadn't waited 4 years to find out.

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Agreed. I know the discussion is about bisphosphonates, but had to chime in to say Tymlos didn't really do much for me...and that was supposed to be one of the best bone growth meds.

I followed everything to the letter, including clean diet and exercise: plenty of calcium, Vita D, regular weight training, etc. Scores didn't get any worse, but didn't get much better either - and I paid out of pocket for some of this very expensive medication.

Dr couldn't tell me why my results weren't better (no past meds, diseases or secondary issues to blame) but kept emphasizing at least scores didn't get worse. That's true, but I expected a bit more than that from such a costly daily injectible.

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@katwhisperer

Agreed. I know the discussion is about bisphosphonates, but had to chime in to say Tymlos didn't really do much for me...and that was supposed to be one of the best bone growth meds.

I followed everything to the letter, including clean diet and exercise: plenty of calcium, Vita D, regular weight training, etc. Scores didn't get any worse, but didn't get much better either - and I paid out of pocket for some of this very expensive medication.

Dr couldn't tell me why my results weren't better (no past meds, diseases or secondary issues to blame) but kept emphasizing at least scores didn't get worse. That's true, but I expected a bit more than that from such a costly daily injectible.

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@katwhisperer < >

Exactly. Which is why I want dexa scans as often as I can get them and am ordering bone marker turnover bloodwork even though my current rheumatologist doesn't use them. Teriparatide isn't exorbitantly expensive for me (at least under my current insurance) but I don't know about next year. Evenity was not affordable for me right now. I get that "your mileage may vary" and not everybody's results will be as stellar as some people's. But for what these bone-builders cost, they dang well better build bone.

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@aacatsaregreat

I've only been taking alendronate for about three and a half months, and beyond a couple trivial side effects the first couple of weeks -- very sore and somewhat tired the day after first dose (only that day) and two very short spells of extreme dizziness during the first week and a half or so -- I've had no other side effects that I know of.

I worried prior to taking the first dose, especially after reading about all the possible side effects, and put off taking it for a week. Finally decided to, and so far I'm happy with it.

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I am so happy to be with
this group of live humans. I am not so afraid anymore. I used to feel that any twinge was a side effect. Now, I can ask.

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