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 took Evenity for 8 months rather than the full 12, but believe I got most of the bone buildup or anabolic benefits.
Side effects appeared months 6-8:
Fatigue, brain fog, musculoskeletal aches, rash on scalp and behind ears, upper respiratory drainage and cough I couldn’t shake.
Everything cleared about 4-6 weeks after last dose.
I was concerned about the follow up drug to maintain the gains but ultimately decided on Reclast so I could stop it without the rebound you can get with Prolia.
That was last November and my side effects were:
1. I got Covid a few days later so wasn’t sure at first if it was a reaction to Reclast.
2. My right knee swelled up like a cantaloupe- no previous knee problem. I couldn’t put weight on it even. I used cold packs and hobbled around the house and it resolved in a week.
3. Some aches & pains, fatigue and feeling “off”, mild nausea and trouble sleeping.

But after 3 months I’m back to normal.
At 6 months I noticed some arthritis like pain in my thumbs and also intermittent numbness around my mouth. I’m not sure ( nor is my doctor) if MGUS or Reclast related.
I may be getting some neuropathy but so far it’s subtle and more annoying than troublesome.

* I can’t take Fosamax due to remote history of esophagitus.
* I started taking turmeric/cucurmin and think it’s helped?
*I tend to be sensitive to medication so have avoided taking if possible.

Congratulations for reading all this, hah! Hope it’s helpful.

Hi I have had MGUS for four years! I have labs every 3 months.
My brother in law has Myeloma & it is close to 5 years since he was diagnosed. In the last year his health has greatly deteriorated. Praying for him!

I’m very sorry to hear that. Your brother-in-law is not doing well.
Hugs.
Patty

@sharon55 I'm sorry to hear your brother-in-law's condition. Do you know what treatment he is on?
Ginger

I am 62 and was told yesterday that I have MGUS, picked up during blood tests following heart palpitations. My husband, now 75, was diagnosed in 2021 as a result of presenting with peripheral neuropathy in his feet. Are there any other couples who have both been diagnosed out there, and why have we both got it? We have been married just 12 years, have lived together for 14 years, have always tried to live a healthy lie style in rural Gloucestershire UK. Can anyone help?

Hi @akellmayo4me, you may wish to join others talking about POEMS in this discussion:
- Has anyone been diagnosed with POEMS syndrome?
https://connect.mayoclinic.org/discussion/have-anyone-been-diagnosed-with-poems-syndrome/
How are you doing?

I am struggling to cope with the fact that we both now have MGUS. I did all the research when my husband was diagnosed and asked all the questions. I didn't get much in the way of helpful answers, but my husband has never seemed over worried about the diagnosis. He has peripheral neuropathy which is how they found MGUS. I have been living in fear that he will catch COVID and have done all I can to protect him. Now I have it MGUS and am vulnerable too it is all a bit much and there is still so much I do not understand. (UK)

@award, I moved your posts about being recently diagnosed with MGUS only 2 years after your husband was diagnosed to this existing discussion:
- Does anyone else have MGUS? https://connect.mayoclinic.org/discussion/mgus-diagnosis/

I did this so that you can easily connect with many knowledgeable and supportive members like @pmm @mjlandin @gingerw @ea1 @raye @whitepine66 @mommatracy5 @leslie2121 @sharon55 and many more.

Despite your doing research when your husband was diagnosed, I get what you mean when you say there is still so much to learn and understand. It's overwhelming! But one can only take one step at a time. And now you have a support group ready to walk beside you, answer questions, calm concerns, and help you find out what you need to know.

You're not alone.

Welcome to this MGUS group, @award. I was first diagnosed with IgM kappa MGUS eight years ago. That was a time which coincided with my highest weight ever. Subsequently I’ve lost 10% of my weight by being careful of intake. No latest weight loss gimmicky RX for me. I don’t trust their side effects.

You will want to find a hematologist you feel comfortable with. After trying four different ones, the fifth was a charm and I adore him.

All of us in this MGUS forum may want to contribute a couple of vials of blood twice annually to the Dana Farber Cancer Institute’s PCROWD Study. They send a kit for me to take to my hematologist for blood draws to then be Fedexed back to DCFI. It feels good to participate in being proactive by contributing to future knowledge about MGUS with small gifts of my blood. I believe this research will eventually help others be less alarmed when they are diagnosed.

Wishing you well!