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Alendronate & leg pains

Osteoporosis & Bone Health | Last Active: 10 minutes ago | Replies (18)

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@sandra55

Thank you so much for this helpful comment. I'm 56 years, went on oral Alendronate from Jan 2021- Jan 2023 for osteoporosis after cancer. Went off because of dry/red, irritated eyes.

The benefits: After cancer estrogen removal made the bones detoriate so fast that the small tarsus bones in my foot started to crumble. I could barely walk. After two months on Alendronate I did a 20 km hike again. It took my arthritis pain and even planar faciit pain away. After two years I had great hip density but one of the joints in my back was still weak, and one had become positive (which is a common result, I have been told).

Negative: I followed the prescription and took the medication standing up. But during medication I needed to go off some weeks once in a while because of stomach sickness. To tolerate the medicine I was almost just eating fruit and vegetables in the end, only chicken, eggs and milk products from animals were tolerable. Other meat and fish was not, as well as sweets and chocolate beside some freshly baked cakes.

Problems with eyes are described in literature, f.ex. "Ocular Side Effects of Bisphosphonates: A Review of Literature", DOI: 10.1089/jop.2022.0094.

The paper states that "It should be noted that the portion that binds bone may remain in the body for up to 10 years after administration". I seem to be stuck with the side effects:
- Nausea, a feeling that there is a pressure in my body which causes reflux typically after 3am at night. This causes severe sleeping problems.
- Irregular, "intense" heartbeats
- Leg cramps and tingling, twitching of legs typically in the evening or at night.

I take small amounts of magnesium (20-30 mg) and something else I get from a multivitamine tablet (manganese?), beside D vitamine and calsium. When I hear my heart starts to pound too loud, I stop for a few days. Also, when my feces pass easily, I know it is time to stop as magnesium controls the release. But I didn't know I could also slightly increase calsium.

I think the bisphosphonates is gradually leaving my body as the symptoms becomes weaker every year and also now my eyes improves. For my eyes, I have done IPL treatment in an effort to keep the meibomian glands open. I hope it will pay off.

What I found helpful was training, especially exercises involving many muscles such as barbell squats and also to train knee joints and feet. Foremost it improves sleep with less disturbance at night. When a GP heard that, he suggested me to try collagen, glucosamine, MSN and chondroitin usually used for leg stiffness and joint comfort. One night I couldn't sleep because of reflux pressure, I tried and soon after I slept well. It seems to reduce the side effects faster than without, especially improving sleep. Now I am wondering if someone else has tried this?

It is possible to check the efficiency of bisphosphonates (and other osteoporosis medication) by a simple blood test. In my case the PINP (Procollagen I) was too high measured shortly after seponation. My physician suspected that the bisphosphonates had not been efficient. Can PINP and similar be of help to single out patients likely to get side effects? Now I too am on estrogen and I measured the efficiency again three months after starting. It has been efficient, but by far not as good as Alendronate.

Finally, I spoke to another patient who had used Alendronate for 5 years without side effects. For me it is a great medicine. I would definitively have done this over again if I could, but I would have been more sensitive to the side effects and stopped earlier.

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Replies to "Thank you so much for this helpful comment. I'm 56 years, went on oral Alendronate from..."

Have you tried an elevated pillow to help prevent or relieve the reflux? If not and you'd like to try one, I can recommend one that helps me.