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?

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Patty, Volunteer Mentor | @pmm | Mar 3 9:03am

In reply to @lisamichelleely "I was diagnosed with IgA MGUS WHEN I WAS 52. I’m now 61. The typical age..." + (show)

@lisamichelleely

I was diagnosed with IgA MGUS WHEN I WAS 52. I’m now 61. The typical age for this diagnosis is 70+. So yes, another over-achiever! I had back pain which was diagnosed as pars fractures, also known as spondylolysis. It is a stress fracture on the lumbar spine. That led to bloodwork which resulted in the MGUS diagnosis.

Yes, we “MGUSers” are on the radar, but other symptoms and conditions can happen before we (hopefully never) get to the SMM or MM diagnosis. I see an oncologist/hematologist. It’s NOT enough to just have a primary care doctor. You need to be monitored by a blood specialist. I started out with a bone marrow biopsy to get a baseline reading; had that in August 2016. After that, I was seeing my oncologist twice annually. Well, things started going sideways in 2022. I was feeling incredibly fatigued; heavy breathing, limbs felt like 100 pound weights were attached, excessive sleeping (I felt drugged up) and couldn’t walk more than a few feet without feeling like my heart was pumping out of my chest. Oh, and the strangest of all things, craving dirt! Yes, DIRT! After feeling that way for a couple of days, went to ER and was hospitalized, I needed two blood transfusions. Long story short, I now have both acute and chronic iron deficient anemia, which requires blood transfusions and iron infusions every few months. That explains the pica cravings. My body was telling me what I needed - iron. I’ve also developed Dyshidrotic eczema. My hands blistered over and over for months and the itching could NOT be relieved. I even slept with ice bags on my hands because it was absolutely DEEP, unbearable itching. They would peel so deep that I had bleeding and painful fissures. I finally saw a dermatologist and was prescribed topical steroids & Opzelura (Opzelura is an absolute godsend.) If you read some of the MGUS conditions, this is all listed. The iron deficiency has also caused my fingernails to raise and fall off at different intervals. Still searching for the cause of the blood loss (more tests Monday!) I’m only mentioning these items because you don’t want to ignore treatment for any of them. Just stay vigilant if anything seems off so you aren’t in the emergency room! Hope this helps a bit.

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@lisamichelleely
What a journey you have had so far! You are so right. We should be attuned to our bodies and listen when they are trying to catch our attention.
Best of luck for good outcomes with your blood tests today. Will you let me know how they go?

hsminc | @hsminc | Mar 3 11:43am

In reply to @harty "Google: "Does Curcumin slow the progression of MUGUS." Harty" + (show)

Curcumin is an anti inflammatory substance. Anti inflammatory substances are viewed as anathema by MM and also other cancers. That said, it is controversial and if you decide to take it, consult with a MM oncologist/hematologist - not a pcp and not a "general" oncologist/hematologist. I have read about many issues but have also read positive stories about this substance. The stories were enough to make me think NO but others view it differently.
I have MGUS (IgG lambda); it was diagnosed when I was 59 years old - 23 years ago. My dad had IgA Kappa SMM so I knew what this was about and I was frightened. I think my MM hematologist was also frightened. He ordered blood tests every three months for 17 years - at that time he retired and my6 current MM specialist is not as concerned. I take celebrex and a statin drug (zocor). I have taken zocor since I was 52 years old (although I did not have elevated lipids - long story) and have taken celebrex since 2006-7 (an anti inflammatory) and have never had issues with each. Both drugs are being studied because some investigators believe they can be repurposed for MM. Statins interfere with a rate limiting step for MM and Celebrex is an anti inflammatory. There have been large VA patient studies using statins, which were positive - the conclusion was that patients that took statins had lower rates of progression. Mayo (RST) and the Cleveland Clinic had a clinical trial with celebrex, MGUS and SMM. The doses, however, were low and the results were null. There have also been studies with analogues of Celebrex.
This is a long answer to your question. Again, my advice is to approach Curcumin carefully and get good information to make a decision.

sunsetchris | @sunsetchris | Mar 3 1:38pm

I have had MGUS since 2017. MY M spike showed up then. The M spike is a sneaky little character. It is there sometimes and then goes away. Mine seems to make an appearance every two years which my Oncologist told me in simple language is it is still there, even if it does not show in blood work. I have noticed each time it comes back it comes back a little higher. I notice fatigue and stiffness. This year I seem to have developed sharp elbow pain for the past 3 months. I am wondering if it is related to MGUS. My primary says it is tendinitis but did order a battery of tests, including all the MGUS and myeloma tests. Anyone else have elbow pain? Thanks. Chris

dducote | @dducote | Mar 3 5:37pm

In reply to @dducote "Oh dear. I have diagnosed MGUS and severe osteoporosis of the spine. I’ve been in pain..." + (show)

After reading about the comment I originally replied to I went to urgent care Sunday, yesterday, March 2. X-ray should osteoarthritis in my neck. I will follow up with the bone doctor.

karencan2025 | @karencan2025 | Mar 3 5:45pm

My husband's blood tests last week show a spike in monclonal protein and that means either myeloma or MGUS. I am losing my mind, completely distraught for him, myself and my children. We don't have a diagnosis yet but the fact that he also has anemia suggests myeloma, from my Dr. Google searches. Please tell me I am wrong. He's only in his 50s and our kids are still in their teens.

Ginger, Volunteer Mentor | @gingerw | Mar 3 9:03pm

In reply to @karencan2025 "My husband's blood tests last week show a spike in monclonal protein and that means either..." + (show)

@karencan2025 First, welcome to Mayo Clinic Connect. Now, please do not do the Dr. Google search!!! It will take you down a rabbit hole and do nothing for your peace of mind.

What is your husband's doctor telling him? What additional testing is scheduled? It is important for you both to be listening to your doctor and the medical team.

For tonight, please sit down with a cup of tea, a few cookies, and pen with paper. Write out your feelings, questions, get it all out. Then do your best to have a quiet and relaxing evening. Can you do this?
Ginger

karencan2025 | @karencan2025 | Mar 3 11:37pm

In reply to @gingerw "@karencan2025 First, welcome to Mayo Clinic Connect. Now, please do not do the Dr. Google search!!!..." + (show)

Hi Ginger,
That support is really helpful; thanks so much. He just had more CT scans and blood tests so the next step will be to meet with the cancer centre as they deal with the next steps. That doesn't mean he has been told it's myeloma, just that the specialists at the cancer centre will take over from his family doctor. We shall see. He has quite a lot of medical knowledge due to his profession but this is a new one. I am hoping it is MGUS, which would be a much more favourable outcome. It's the anemia that throws me as my understanding is that is not as common with MGUS.
I really appreciate being allowed into this community. Thank you so much.

Ginger, Volunteer Mentor | @gingerw | Mar 4 8:44am

In reply to @karencan2025 "Hi Ginger, That support is really helpful; thanks so much. He just had more CT scans..." + (show)

@karencan2025 Yes, waiting to see what the cancer center has to say can be very anxiety provoking! But as you have said, until things are figured out there's no sense in getting to upset. Our minds sometimes want to go right to the worst case scenario. But I'll bet that no matter what the outcome is, you got this. There is a lot of information available not only here, listening to members' stories, but also sites like the International Myeloma Foundation myeloma.org

I will be most curious what everything points to after all the testing, and I hope you will come back and let us know.
Ginger

franciscomacias | @franciscomacias | Mar 4 3:06pm

In reply to @franciscomacias "I am 70 years old and I've just been diagnosed with MGUS last October (Oct. 2024)...." + (show)

To follow up on my post 3 days ago. I am the 70-year-old that was diagnosed in October. In 2017 my sister was diagnosed with MGUS. She was also 70 years old but had also pulmonary arterial hypertension at the time. She ended up with Amyloidosis (AL) and acute kidney injury with chronic renal failure (caused by the Al). In Noivember 2023 to April 2024 she underwent Chemotherapy and was administered various cancer drugs such as Daratumumab cy BORD, Bortezomib, Cyclophosphamide, Dexamethasone, which were a combination of pills and shots in the abdomen. She fell into the 5% that had issues with MGUS. Our father had renal cancer and lived with one kidney for over 30 years. I am hoping I fall into the 95% that can live with MCUS.

BucketT | @buckett | Mar 8 10:30am

MGUS the twists and turns and hopeful.
My MGUS journey (diagnosed Nov, 2024)has taken some interesting turns. The whole body scan, revealed masses on the adrenal glands and sigmoid colon. CT scan of adrenal glands determined benign mass BUT identified aneurysms with arterial dissections in the celiac artery, hepatic artery and splenic artery. Very rare. They thought it was due to a past trauma but I can’t remember anything specific. Repair at this time has more risk than potential benefit. So it’s another, watch it every 6 months for increased enlargement. My colonoscopy is scheduled this coming Thursday.
Last week my EMG confirmed peripheral neuropathy. MGUS related or B12 deficiency? A lab test this past January revealed the low B12 level and I have started B12 shots. Fingers crossed it helps the neuropathy. I know about the correlation of MGUS and neuropathy. Just wondering how many MGUS/neuropathy individuals also have low B12? Diabetes is also related to neuropathy. Does that also correlate to MGUS/neuropathy?
Now the HOPFUL and may have been presented before in this forum but I think it is something to keep an eye on. A study is looking at the potential of Metformin (diabetes agent) slowing the progression of high risk MGUS and SMM towards multiple myeloma. The study is completed and should be released this summer?
A new population study (this is an observational study in contrast to the Metformin study which is a randomized trial) just caught my attention regarding the GLP-1 diabetes agents slowing the progression of MGUS in diabetics.
“Association between glucagon-like peptide-1 receptor agonist use and progression of MGUS to multiple myeloma among patients with diabetes “
In short a 55% reduction in progression.
Would this same benefit be seen in prediabetics. I am one of those. Or even in MGUS individuals without diabetes?

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