Does anyone else have MGUS?

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

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 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.

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.

Here are a couple more articles on MGUS:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445886/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9301229/

I was sedated when I had a bone marrow biopsy. I was terrified!
It was not that bad. But I was sore for a week where they stuck the needle in to my hip. I used cold packs off & on- get 2 so you can alternate.
Some people say it was no big deal. 😉

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. 🥹

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.

I am told now by 3 oncologists I have POEMS. ( an ugly step sister - I made that name up) of Malignant Myeloma. If they are all correct I will find out lots more when I appear for my appt 11/29 at Moffitt Cancer Center Tampa Fl for my initial eval. I have had 6 month of studies no treatment start was BLUE FEET 👣 PERIPHERAL NEUROPATHY- then hypothyroid NEW Diagnosis at age 70 monoclonal gammopathy & a bone 🦴 lesion S1.