1. < Osteoporosis & Bone Health

Anyone on Alendronate?

Posted by 12jo @12jo, Apr 5, 2023

I have been on Alendronate since May 2017. If I don't have osteoporosis, but some osteopenia, how long is it safe to take a 'vacation' from the drug? Does it do any good to take it every other week? My internist wants me to switch to Prolia, which I will not do. I don't know if I would have any side effects from it and it is not a drug that can be stopped w/o possible problems. I am 78 years old and my only health condition is RA, which is under control and has not affected my day-to-day life. I have read that alendronate can affect your esophagus and occasionally, over the years, I have had times where I feel like food gets stuck and it takes anywhere from 3 - 30 minutes for this uncomfortable feeling to go away. I have had my esophagus stretched via an endoscopy several times.
Re Prolia, I have read : People with weakened immune systems are advised not to use to denosumab because it can lead to serious infections that require hospitalization (such as heart infections). It can also cause disintegration of the jaw, called osteonecrosis, and atypical femur fractures. Recent studies have shown that people who stop taking denosumab experience bone loss within the first year if they do not start taking a new osteoporosis treatment. In clinical trials, results also suggest that people who stop taking denosumab and did not start another treatment experienced more vertebral fractures (fractures in your spine) in the 10 months after treatment than people who had been taking a placebo.
I am interested in hearing thoughts about 'vacationing' from alendronate.

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hmbrglr | @hmbrglr | Feb 3 7:54am
In reply to @suzycute "I took Alendronate for 9 weeks when I started to feel soreness & stiffness in my..." + (show)
@suzycute

I took Alendronate for 9 weeks when I started to feel soreness & stiffness in my joints & muscles. A week or two before this I had painted 2 bathrooms & blamed it on getting older. I am 67 years old with osteopenia. However, the pain & stiffness got worse over the next couple of weeks until I could barely get out of bed, stand, sit, etc. Ibuprofen helped but did not get me through the night. My dcotor has me on Miloxicam for the pain and it helps, but my movement is still uncomfortable & diminished. I also have low energy. I stopped taking it after 11 weeks with a very small amount of improvement, I think. Hard to tell on Miloxicam.
It has now been just over 2 weeks of off Alendronate & I am so worried about how long it will take to feel better, if at all. What are other people's experiences with recovery time? This has negatively changed my life in a big way.

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Could the pain be caused by painting? I have experienced Ed pain from doing tasks like those. I’ve been taking Alendronte now for 1 month. I feel stiffness the day I take the med but I always have pain I. My hip ( before taking this???!). I am weary of taking this but I’ve experienced a bad rash from 2 nd Prolia injection. I feel your concern.

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suzycute | @suzycute | Feb 3 8:34am

Thanks for responding. I am (was) very active and this changed from regular soreness after using muscles not normally used. I always recover after a day or two. The pain and stiffness increased dramatically over the course of a few days to the point of having trouble walking, sitting, standing, etc. I have been miserable for over 4 weeks now.
My doctor does not think it is from Alendronate but thinks I have suddenly developed an auto immune disorder. That seems like an unbelievable coincidence to me, but he is going to run tests this week.
I'm looking for a bit of hope that other people have recovered even after 4-5 weeks of intense pain & stiffness, I'm very worried at this point,

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mao22 | @mao22 | Feb 3 10:33am
In reply to @jennifer28 "Sorry to hear how badly you/ve been affected. Started Alendronate as a weekly pill a few..." + (show)
@jennifer28

Sorry to hear how badly you/ve been affected. Started Alendronate as a weekly pill a few months ago - so far, no side effects but your comments and those of others have raised some concerns. I am 76 yrs old with osteoporosis, I did fall 4 yrs ago and broke a hip - it was not a standing fall, actually moving quite quickly, slipped in roadside scree and fell quite heavily. Recovered quickly but the dr pointed out that I probably wouldn't recover so well in my 80's so eventually decided to try Alendronate. Now I'm wondering if I made the right decision! Haven't had a scan as you have to wait 2 yrs before any results might show.

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Jennifer: I am 77 yrs old and have been back on Alendronate (first time was after 1st compression fracture in 2017). I was then diagnosed with osteoporosis. After 4 years on Alendronate, and since my Dexa scores hadn't changed, I was given a drug holiday (a big mistake as it turned out). A year and a half later I had a second compression fracture early in 2023 and was then on Evenity for a year, followed up with my second time on Alendronate. I go back to the doc in April to reevaluate and will have my 3rd Dexa scan in 3 years to monitor improvements. Waiting for 2 years when we have this dx is not helpful for decision making. Check with your doctor. Since you have already been diagnosed with osteoporosis, you should be able to monitor your situation more frequently,

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aacatsaregreat | @aacatsaregreat | Feb 5 10:59am
In reply to @suzycute "I took Alendronate for 9 weeks when I started to feel soreness & stiffness in my..." + (show)
@suzycute

I took Alendronate for 9 weeks when I started to feel soreness & stiffness in my joints & muscles. A week or two before this I had painted 2 bathrooms & blamed it on getting older. I am 67 years old with osteopenia. However, the pain & stiffness got worse over the next couple of weeks until I could barely get out of bed, stand, sit, etc. Ibuprofen helped but did not get me through the night. My dcotor has me on Miloxicam for the pain and it helps, but my movement is still uncomfortable & diminished. I also have low energy. I stopped taking it after 11 weeks with a very small amount of improvement, I think. Hard to tell on Miloxicam.
It has now been just over 2 weeks of off Alendronate & I am so worried about how long it will take to feel better, if at all. What are other people's experiences with recovery time? This has negatively changed my life in a big way.

Jump to this post

Thanks for the informative post. I've been on Alendronate for 7+ months, 70mg dose weekly.

I had little problem to begin with; just a lot of pain the day after taking the first dose, an episode of vertigo the first week and some on again/off again dizziness. But over the past 4-5 weeks I've begun experiencing other side effects: tenderness (not pain) in my ribs, especially the sides of the upper ribs; mild upper back pain; left clavicle pain (comes and goes); "bruised"-like feeling in various arm and leg bones (again, comes and goes); lots of gas (have had this since I began the pill); painful leg cramps (calf); a second episode of vertigo; mild dizziness or lightheadedness; strange taste in my mouth; dry lips; legs sometimes feel strange and stiff; knee discomfort; cough and continuous clearing of throat; some days just an all around yucky feeling but nothing I haven't been able to compensate for. Now, for the past couple of weeks, I've been experiencing high blood pressure. It normally averages out at around 115/75, but lately it's been anywhere from 130/78 to 139/85. This isn't listed as a side effect, but I've seen studies that it can occur in rare instances.

Today was my day to take the med, but I decided not to. I'll instead wait until I see my doctor at a regularly schedule appointment next week and will tell her I want to go off the pill and see if the side effects subside. I say they're side effects as I didn't have these problems until just recently!

Please keep us advised of your experience. You comments have certainly been helpful to me!

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2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 5 1:20pm

Good afternoon @suzycute, Just happen to have received this information about drug vacations from my endocrinologist at Mayo Clinic. Dr Robert Wermers. There are quite a few posts from fellow medical personnel. You can see what is important to you.
Chris

REPLY
1 reply
suzycute | @suzycute | Feb 5 2:26pm
In reply to @aacatsaregreat "Thanks for the informative post. I've been on Alendronate for 7+ months, 70mg dose weekly. I..." + (show)
@aacatsaregreat

Thanks for the informative post. I've been on Alendronate for 7+ months, 70mg dose weekly.

I had little problem to begin with; just a lot of pain the day after taking the first dose, an episode of vertigo the first week and some on again/off again dizziness. But over the past 4-5 weeks I've begun experiencing other side effects: tenderness (not pain) in my ribs, especially the sides of the upper ribs; mild upper back pain; left clavicle pain (comes and goes); "bruised"-like feeling in various arm and leg bones (again, comes and goes); lots of gas (have had this since I began the pill); painful leg cramps (calf); a second episode of vertigo; mild dizziness or lightheadedness; strange taste in my mouth; dry lips; legs sometimes feel strange and stiff; knee discomfort; cough and continuous clearing of throat; some days just an all around yucky feeling but nothing I haven't been able to compensate for. Now, for the past couple of weeks, I've been experiencing high blood pressure. It normally averages out at around 115/75, but lately it's been anywhere from 130/78 to 139/85. This isn't listed as a side effect, but I've seen studies that it can occur in rare instances.

Today was my day to take the med, but I decided not to. I'll instead wait until I see my doctor at a regularly schedule appointment next week and will tell her I want to go off the pill and see if the side effects subside. I say they're side effects as I didn't have these problems until just recently!

Please keep us advised of your experience. You comments have certainly been helpful to me!

Jump to this post

I go to my doctor tomorrow who is skeptical that Alendronate is the cause of my symptoms. I will say I woke up this morning with much less pain & stiffness in my hips, thighs, knees & calfs. I am hopeful this means the side effects are going away, finally!

Initially the pain & stiffness started in my hips & thighs and after a week or so my shoulders (worst in the right shoulder) were very painful as well. My calves , knees & right wrist are visibly swollen now.
For me, at least it seems to have progressed through my body. I'll find out tomorrow if my blood pressure is up. I'll give an update when I know more.

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dulu | @dulu | Feb 6 5:50am
In reply to @rosemaryhow "I was placed on Alendronate by my Physician due to a Bone Density scan that showed..." + (show)
@rosemaryhow

I was placed on Alendronate by my Physician due to a Bone Density scan that showed high risk for hip fractures, and within about 3 months, I felt really terrible. So nauseated, could not eat, and lost about ten pounds. Then appetite improved some, but I developed severe pain in my joints. I actually felt like my legs were not attached to my spine, and I was going to fall when I got up to walk. So I went from biking, and running on my treadmill, to severe joint pain. and loss of mobilization. I quit the drug, as it was horrible side effects for me. So now she wants to start me on prolia injections every 6 mo. Guess what-side effects are listed about the same. I am thinking of taking my chances with no drug, but I am afraid she will think I am a non-compliant Pt. Anyone have bad side effects as this?

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Look into AlgaeCal bone building pack. It's all natural calcium from the sea. I've used it for 2 years after which, my spine density improved from -3.2 to -2.7. It is on the expensive side but I chose to spend my money on me instead of leaving it in a will.

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rjd | @rjd | Feb 6 8:14am
In reply to @artscaping "Good afternoon @suzycute, Just happen to have received this information about drug vacations from my endocrinologist..." + (show)
@artscaping

Good afternoon @suzycute, Just happen to have received this information about drug vacations from my endocrinologist at Mayo Clinic. Dr Robert Wermers. There are quite a few posts from fellow medical personnel. You can see what is important to you.
Chris

Jump to this post

I cannot seem to View the info about drug vacations that you reference. How do I access it?

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1 reply
dawnplanta3456 | @dawnplanta3456 | Feb 6 11:08am

You may have seen my earlier comment where I suffered two atypical femur fractures after being on alendronate
for 2 1/2 years. Still recovering and surgery was almost 4 months ago.

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12jo | @12jo | Feb 6 2:40pm
In reply to @rjd "I cannot seem to View the info about drug vacations that you reference. How do I..." + (show)
@rjd

I cannot seem to View the info about drug vacations that you reference. How do I access it?

Jump to this post

I was wondering the same thing.
Hopefully the person who posted will see this and provide
the information.

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