Had anyone had a bad reaction to Alendronate_ - PMRGCAuk

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Had anyone had a bad reaction to Alendronate_

ncfaaeos profile image
38 Replies

I was prescribed Alendronate at the beginning of the year when I started taking it once a week. Since then I have had increasing pain mainly in my thigh muscles, groins and shins. It has become so bad that I have difficulty in walkking. I mentioned the possibility of a connection between these pains and this drug to my rheumatologist last week and asked if she had experienced such a reaction in others. The response was vague and she said she wouldn't like me to stop taking it (seemingly, I have pre-osteoporosis). I have decided to give the pills a miss for a couple of weeks to see if I can feel a difference but I wondered if anyone in the HealthUnlocked Community had felt side effects to Alendronate.

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ncfaaeos
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38 Replies
PMRpro profile image
PMRproAmbassador

Muscle and joint pain is a listed side effect - it is of many medications.

What was the evidence of "pre-osteoporosis" - otherwise usually called osteopenia? Have you had a dexascan? If so - what were your t-scores?

ncfaaeos profile image
ncfaaeos in reply toPMRpro

It was the result of a scan but I do not know the actual results, only that I was in a pre-osteoporosis stage.

PMRpro profile image
PMRproAmbassador in reply toncfaaeos

Osoteopenia ranges from a t-score of -1.0 to -2.5. If your score is -1.1 that is absolutely normal for our age group and barely any different from the -0.9 that wouldn't be described as "pre-osteoporosis". If, on the other hand the score is -2.5, with -2.6 being osteoeporosis, then I might feel it was a reasonable comment.

Nothing would induce me to take a bisphosphonate with the t-scores I have: -1.1 a couple of months after starting pred and -1.3 7 years later after being on pred the whole time. Both are osteopenia readings, but not the sort to cause concern.

Bisphosphonates shouldn't be taken for more than 3 years at most without a holiday - and I would have taken them for no reason at all. They have potentially serious long term effects. I'm not saying they should never be used - I am saying they should only be used when needed.

ncfaaeos profile image
ncfaaeos in reply toPMRpro

Thanks so much for this PMTpro. I shall try to get a hold of my readings and consider future moves in their light. In the meantime, I am not taking the pills (first week) and hoping to feel improvement (less pain). I'll report back in due course.

Soraya_PMR profile image
Soraya_PMR

I’d do the same as you, stop the pills then wait and watch.

Commit your energies to benefitting your bones: exercise, good diet, and prunes! These IMO are going to be as beneficial without the side effects.

ncfaaeos profile image
ncfaaeos in reply toSoraya_PMR

Thank you, Soraya. I do follow a very healthy diet and have always included lots of exercise in my daily routine. Hopefully, I'll feel less pain soon and be able to walk more again.

Soraya_PMR profile image
Soraya_PMR in reply toncfaaeos

I hope so.

I’ve found it’s a fine line with exercise and PMR. Too little and I feel bad; too much and I feel bad! Somewhere in the middle, and BINGO!

jinasc profile image
jinasc

Follow PMRpro's advice.............AA is given often before you need it as what I call 'a just in case'.

Insist on the Dexa Scan take someone with you and I would ask how do they know you have pre osteoporosis.

BTW if you do find you need anything for any 'Osteo's then always look at the Nationa Osteoporosis website. Accurate information to let you gain knowledge = power.

ncfaaeos profile image
ncfaaeos in reply tojinasc

Many thanks, Jinasc. I'll certainly check that website out.

SheffieldJane profile image
SheffieldJane

These are well known side effects. Oh dear! Why are our doctors so dazzled by these drugs. I am afraid that I would be disinclined to persevere in your shoes, especially as your bones are not too bad. Then move onto a programme of building up the bone with good diet, supplements and appropriate exercise. Good luck with whatever you decide!

ncfaaeos profile image
ncfaaeos in reply toSheffieldJane

Thanks, SheffieldJane - sound advice.

Chihuahua1 profile image
Chihuahua1

I started Alendronic acid and over 4 weeks each time I took a dose I got increasingly more poainful stomach cramps that completely doubled me up on the last dose. The doctor swapped me onto Risedronate and it was fine. No more adverse reactions.

ncfaaeos profile image
ncfaaeos in reply toChihuahua1

Thanks, Chihuahua1 - I'll not the name of the other med. and bring it up with my rheumy.

Kjdsg profile image
Kjdsg in reply toChihuahua1

I started alendronate 3 weeks ago and 3 days in week 3 I am experiencing diarrhea, sometimes uncontrollable unless I take Imodium. I’ve taken this 4 years ago for 4 weeksand experienced no side effects. I wonder long I should wait to get use to it. Trying to avoid prolia. Has anyone experienced diarrhea using alendronate? And I noticed the inactive ingredients are different across generic brands. Has anyone changed generic brands fir better results, no side effects? I’ve not heard of Risedronate. How is it taken?

PMRpro profile image
PMRproAmbassador in reply toKjdsg

If you want responses to your questions you probably need to post as a new thread - this thread is 2 years old and few people will see it.

Kjdsg profile image
Kjdsg in reply toPMRpro

Thank you. I will.

Chihuahua1 profile image
Chihuahua1 in reply toKjdsg

Hi Kjdsg. Risedronate is a tablet taken once a week if I remember rightly. I found it to be much kinder on the gut and experienced no other side effects with it either. Several people I have spoken to who changed to it after issues with alendronate have said the same thing.

Kjdsg profile image
Kjdsg in reply toChihuahua1

This is encouraging news. My doctor took me off Alendronate and added tums or Prilosec. Don’t know how I never thought to take tums… already feel Some relief, but that med does not work for me. Thank you for your response.

Kjdsg profile image
Kjdsg in reply toKjdsg

We’ll have to discuss next steps after my stomach heals a bit

PMRpro profile image
PMRproAmbassador in reply toKjdsg

The Tums are a double benefit - and antacid AND source of calcium!

Chihuahua1 profile image
Chihuahua1 in reply toKjdsg

Kjdsg you are very welcome

Morning. I took it for a year before I stopped taking it to see if it was the source of very serious breathing issues. In winter I had to stop going out as I couldn't catch my breath in the cold. Come Spring and after riding bike to my Doctors office I had to sit and gasp for air. I was put on puffers , one to treat infection and the other to open the airway that did nothing for me. That summer we had forest fires and I was isolated inside for two months. In Fall I had enough and quit the Alendronate as the first step of elimination. It stays in your system for years so I knew that I did not expect any result for at least 3 months. Result , my breathing went back to normal. I have to rely on Calcium/Vit D and K2 and exercise for my bones.

GCA/Temporal Arteritis 4 years

Note: My Rheumatologist was consulted at every step.

ncfaaeos profile image
ncfaaeos in reply to

Thanks for the feedback, lindanna. May I ask ow long it took for the side effects to subside after you stopped taking the drug?

in reply toncfaaeos

Within 6 weeks I could draw a deeper breath and 8 weeks I could have a walk in the cold without fear of having to stop and catch my breath.

ncfaaeos profile image
ncfaaeos in reply to

Good to know - thanks, lindanna.

Marijo1951 profile image
Marijo1951

I didn't have the effects that you mention but I only took it for two weeks. It gave me the most appalling burning and painful sensation in the oesophagus - more like swallowing sulphuric acid. I don't ever want to take it again, especially as its benefits are, according to many, dubious to say the least.

ncfaaeos profile image
ncfaaeos in reply toMarijo1951

Thanks for the feedback, Mariho 1951. Actually, I have also had similar symptoms - maybe not as strongly as you describe, but they are there from time to time, like heartburn.

ClarkB profile image
ClarkB in reply toMarijo1951

Despite being scared by what the doctor told me would happen if I didn’t take Alendronic acid, I have refused it. I have osteoporosis, diagnosed before PMR. Have read various articles on the pros and cons of taking it, but it’s worth reading ‘Your Bones’ by Lara Pizzorno, for her views, in a book recommended on this site.

Marijo1951 profile image
Marijo1951 in reply toClarkB

Yes, it's an excellent book with a lot of good advice about lifestyle changes re diet, supplements, exercise etc

ncfaaeos profile image
ncfaaeos in reply toMarijo1951

Am looking forward to reading it, Marijo1951.

ncfaaeos profile image
ncfaaeos in reply toClarkB

Many thanks, ClarkB; I'll look into that book.

Thomas45 profile image
Thomas45

I had awful painful reactions to taking bisphosphonates and gave up after a few weeks.

I've been off prednisolone for PMR for about three years but I don't feel like I did before PMR due in part to lymphoedema in my lower legs and in part due to my Paroxysmal atrial fibrillation becoming permanent. It's also due to the triggering of urticaria by a beta blocker, which I stopped taking on medical advice a year ago. I also think that my height doesn't help. I'm 6'7" tall. PMR has left my body but I still have days when I have little enthusiasm to do anything but sleep.

ncfaaeos profile image
ncfaaeos in reply toThomas45

Thanks for the feedeback, Thomas45. I am glad to note that you do not have PMR anymore but sorry you are feeling so tired a lot of the time. I hope your doctor will come up with something that can help this. Spring often makes one feel tired before better weather really sets in. We can look forward to that. Being only 5 ft tall, I don't have the height problem - at least not in the same way :) !

daw50 profile image
daw50

I was prescribed Alendronic Acid tablets but could not tolerate them. Instead I had Zolendronate infusions once a year for 3 years. I had no adverse side effects from the infusions.

ncfaaeos profile image
ncfaaeos in reply todaw50

Thanks, daw50. I'll mention that possibility to my rheumatologist.

Marijo1951 profile image
Marijo1951 in reply toncfaaeos

There is an alternative oral tablet as well, Risedronate Sodium, which you have to take in just the same way as Allendronic Acid. I tried it and it didn't have the horrible side effects that AA had, but I wasn't comfortable with it, so I only took it once. If you're happy to try it, it might be worth suggesting it to your doctor.

ncfaaeos profile image
ncfaaeos in reply toMarijo1951

Thanks, Marijo. It's good to know about it.

Dream21 profile image
Dream21

No. I have not experienced that.

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