Does anyone else have MGUS?

Hello, can I ask what the side effects were from the osteoporosis drug treatments you took and whether you are on continued IV infusions or oral medication. I am almost 70, have always been very active (walk outside every day 3+ miles) and was just diagnosed with osteoporosis last year. When I recently saw a Rheumatologist to rule out an autoimmune disorder on another matter, both her and her nurse seemed horrified that I was not on any medication for it. I have ALWAYS been sensitive to medications (just the way God made me) and I am leery of taking Fosamax (her recommendation) or any other drugs. Has anyone had side effects on Fosamax? I also have MGUS diagnosed in 2021 and I see the hematologist again in November and will discuss with him. Thank you all in advance for any feedback and praying for healing and comfort to all those on this forum.

I also was surprised to learn about having osteoporosis as I’m very active. (65 now). I was concerned about Tymlos for that reason.
I checked with my oncologist about which osteoporosis drug was safest. She said either one was okay to take with MGUS.
But before I could take anything, I went snow skiing and got 2 vertebral compression fractures- never broken any bones before (was 63 then).
So started Evenity then did a Reclast infusion last November. Had side effects with both but they were effective- no more fractures (no snow skiing either!).
I’ve taken a few spills (turned my ankle, etc but nothing broke.

However the black box warning on Tymlos may be removed now?
I think the warning on Evenity may be gone too.

Article is a little old but might help someone with IgM MGUS:
https://pubmed.ncbi.nlm.nih.gov/25572169/
Quote: "We conclude that all patients with IgM MGUS and neuropathy should be screened for anti-MAG antibodies and, if positive, they should be offered treatment with rituximab."

I hear you Leslie, I really enjoyed social work, I did it for almost 24 years before I had to stop due to my symptoms, I'd give anything to return to my job but I don't see that happening in the near term, I'm not real excited about the bone biopsy, sounds quite unpleasant, had a spinal tap a couple months ago and it took a while to get over those unpleasant pain symptoms, jamming needles and the spine just sounds wrong, life is crazy!

I’m a social worker too! So sorry you are suffering. 🥹

Hi, thank you so much for the reply, I'm sure for those that have been in the forum for a while are tired of answering the same questions over and over and seeing the same questions but in my circumstance I literally cannot scroll more than one or two pages daily and cannot type more than a couple keystrokes per day otherwise my arms become very painful and numb similar to wearing an extra tight scuba diving suit, I've never worn a scuba diving suit but I could imagine if one were to wear a very small tight suit it would feel like my upper extremities right now. I cannot even sign my name, I have to use a stamp, my IGG numbers are in the low to mid 2000s, all my blood work is in normal ranges, my hematologist ordered a bone biopsy and a bone scan which will be conducted in November 2023. I had to stop working in October of 2022 because I could no longer perform my duties as a social worker, anytime I use my hands my wrists forearms upper arms and chest become extremely tight and numb. I've had so many tests I can't even keep track and nothing seems to be coming back with any indications of something being wrong. I hope to God I don't have multiple myeloma but if I do I guess I'll deal with it. Hopefully the tests come back negative and there's something else less invasive going on. I appreciate your reply. I have to use voice text via my email then copy and paste so please forgive any good miracle errors or spelling errors. Thank you again take care.

I have MGUS. My Dr wants me to take Tymlos to strengthen my bones. I have osteopenia & osteoporosis. I received the Tymlos today. The 20 page Medicine Guide that came with it, states this drug could possible cause bone cancer. I wasn’t told this. Does anyone have this situation?

Hi, thank you so much for the reply, I'm sure for those that have been in the forum for a while are tired of answering the same questions over and over and seeing the same questions but in my circumstance I literally cannot scroll more than one or two pages daily and cannot type more than a couple keystrokes per day otherwise my arms become very painful and numb similar to wearing an extra tight scuba diving suit, I've never worn a scuba diving suit but I could imagine if one were to wear a very small tight suit it would feel like my upper extremities right now. I cannot even sign my name, I have to use a stamp, my IGG numbers are in the low to mid 2000s, all my blood work is in normal ranges, my hematologist ordered a bone biopsy and a bone scan which will be conducted in November 2023. I had to stop working in October of 2022 because I could no longer perform my duties as a social worker, anytime I use my hands my wrists forearms upper arms and chest become extremely tight and numb. I've had so many tests I can't even keep track and nothing seems to be coming back with any indications of something being wrong. I hope to God I don't have multiple myeloma but if I do I guess I'll deal with it. Hopefully the tests come back negative and there's something else less invasive going on. I appreciate your reply. I have to use voice text via my email then copy and paste so please forgive any good miracle errors or spelling errors. Thank you again take care.