Does anyone else have MGUS?

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.

Hi @monte22 Most of us in the forum have some medical issues that we’re either facing, working through or have overcome. Either way, we’re all here because it’s a special place where we can help others. No one mind repeating information what may be a lifeline to someone else. I’m just happy you’re here with us.
But I am sad to hear about your horrible feelings in your arms and hands. I went through similar this past spring and honestly, your description of wearing a too tight scuba suit is accurate. After an MRI and tests to make sure there was nothing else going on, I went to see a licensed Massage Therapist. She worked miracles and within 3 sessions she had me back to normal…no waking up in the middle of the night with numb hands or arm/wrist pain. I couldn’t type or hold a book or phone. So it may be worth your time to find a licensed massage therapist who specializes in neurological massage or myofascial release massage. I really felt there was no hope and my therapist worked miracles.
Have you tried a massage??

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?

Welcome to Connect, @monte22. MGUS generally is perceived as not having many symptoms but as other members, such as @laurinea, can attest to, they do have symptoms such as neuropathy, night sweats, etc..

I’ve found a number of conversations in the forum with other members. I realize that you’re having a difficult time being able to cull through them yourself but if you could read a little bit, there is a discussion where there is a lot of information. Here’s the link:

~Does anyone have any info on MGUS treatment or risk of progression?

@nick86 had similar questions about anxiety and what to take to slow the progression of MGUS. Other members in this discussion with sage advice are @pmm and @gingerw,
@leslie2121 is taking Curcumin to help with inflammation and @remainanonymous has mentioned the possible use of Metformin to slow the progression of MGUS.

There are many other members offering up suggestions and things that have helped them. So if you’re able, please read through the comments a couple at a time.

Everyone’s case is a little different so something that may work for them may not be suitable for you. I’m so sorry you’re having such a terrible time with side effects. May I ask what you’re experiencing?

MGUS can progress into a blood condition called Myltiple Myeloma which can have some serious complications and more symptoms.
When was the last time you’ve been evaluated for your condition?

Unable to type much or scroll through comments due to my MGUS symptoms, can anybody relay any treatment options you have tried that have worked, such as prescriptions or supplements? Any insight would be greatly appreciated as my symptoms are quite unbearable. Thank you.

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 just came across this post and found it helpful.
https://ashpublications.org/blood/article/131/2/163/37011/How-I-manage-monoclonal-gammopathy-of-undetermined