[Community Member]

I have never taken Fosamax.

You might research it and see if there is a problem with taking it when you have MG. I have had to check out various things given to me by a doctor that it turned out there was an interaction if I used it because I have MG.

[Community Member]

Hello DD,

Unfortunately, figuring the source of our weakness is very challenging. Weakness is listed as a side effect for fosamax, not necessarily just for mg patients. I haven’t found it on any mg cautionary lists either.

Due to significant weakness following a crisis, my primary decided I should take a small hiatus from it until my strength returns. The risk of weakness causing a fall, while having strong bones didn’t make sense.

I’m not sure if there is an osteoporosis medication that doesn’t have the potential to cause weakness. I’ve asked my neurologist for a recommendation, it seems trial and error was all they could suggest.

Wish I had a better answer than listen to our body until we find the right medication.

[Community Member]

Thank you, Nora. That is so very helpful. 9 years of being on prednisone has caused osteoporosis and generic Fosamax is the first med. My neurologist only said to watch my MG symptoms to see if I could tolerate it. I may give it another week to see if it happens again to give it a decent shot. I take it once weekly and have taken it twice now.

My PCP also mentioned hormone therapy as a possibility.

Have you tried any other meds for osteoporosis or only Fosamax?

[Community Member]

At this point, I haven’t tried another osteoporosis medication. I’ve started doing some research into other options. I plan to discuss with doctors before just restarting fosamax.

The orthopedic surgeon I consulted with for spinal fractures, told me that fosamax needs to build overtime in our system and that it could be up to 9 months to reach full effect. The recommendation was to delay physical therapy that long, so not to cause another fracture.

Definitely continue to monitor your weakness and listen to your body, because with gmg is it the disease, the new medicine, or something else?

[Community Member]

I have been taking Alendronate 70mg weekly since before MG diagnosis. I have gone from osteoporosis to osteopenia. Since hindsight shows I have had mild MG symptoms for several years, I don’t feel like the Aldendronate is related to the new diagnosis. I have been on prednisone for 9 months. As a nurse, I know prednisone thins the bones, so feel it’s really important to take the Aldendronate.