1. < Blood Cancers & Disorders

Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

2121 | @leslie2121 | Oct 27, 2023
In reply to @1oldsoul "Hello, can I ask what the side effects were from the osteoporosis drug treatments you took..." + (show)
@1oldsoul

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.

Jump to this post

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.

REPLY
1oldsoul | @1oldsoul | Oct 27, 2023
In reply to @leslie2121 "I also was surprised to learn about having osteoporosis as I’m very active. (65 now). I..." + (show)
@leslie2121

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.

Jump to this post

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.

REPLY
1 reply
donsunlover | @donsunlover | Oct 26, 2023
In reply to @michaelah "Article is a little old but might help someone with IgM MGUS: https://pubmed.ncbi.nlm.nih.gov/25572169/ Quote: "We conclude..." + (show)
@michaelah

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."

Jump to this post

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/
REPLY
2121 | @leslie2121 | Oct 26, 2023
In reply to @monte22 "I hear you Leslie, I really enjoyed social work, I did it for almost 24 years..." + (show)
@monte22

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!

Jump to this post

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. 😉

REPLY
monte22 | @monte22 | Oct 26, 2023
In reply to @leslie2121 "I’m a social worker too! So sorry you are suffering. 🥹" + (show)
@leslie2121

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

Jump to this post

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!

REPLY
1 reply
2121 | @leslie2121 | Oct 26, 2023
In reply to @monte22 "Hi, thank you so much for the reply, I'm sure for those that have been in..." + (show)
@monte22

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.

Jump to this post

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

REPLY
1 reply
2121 | @leslie2121 | Oct 26, 2023
In reply to @sharon55 "I have MGUS. My Dr wants me to take Tymlos to strengthen my bones. I have..." + (show)
@sharon55

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?

Jump to this post

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.

REPLY
1 reply
akellmayo4me | @akellmayo4me | Oct 26, 2023

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.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 25, 2023
In reply to @monte22 "Hi, thank you so much for the reply, I'm sure for those that have been in..." + (show)
@monte22

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.

Jump to this post

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??

REPLY
monte22 | @monte22 | Oct 25, 2023
In reply to @loribmt "Welcome to Connect, @monte22. MGUS generally is perceived as not having many symptoms but as other..." + (show)
@loribmt

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?

https://connect.mayoclinic.org/discussion/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?

Jump to this post

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.

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.