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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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 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.

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.

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

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.

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?

lisamichelleely | @lisamichelleely | Mar 2 7:24pm

In reply to @gingerw "@lisamichelleely Well, at 70 we usually are not as energetic as we were at 50! Generally,..." + (show)

Hello! I actually have an upper and lower GI procedure tomorrow morning; I’ve had three previous procedures to try and identify the source of my bleeding. Perhaps it’s a lesion that splits open then “heals” has been mentioned. It’s been tricky to navigate as I’m in ER more often than I’d like to be for blood transfusions. Doc doesn’t think it’s a bone marrow issue, although sometimes I need blood and I’ve had no bleeding, so hopefully will know more tomorrow! I do as much as I can, while I can! It takes a bit to bounce back from whatever this is. Literally sucks the energy from me. Fingers crossed!

harley22 | @harley22 | Mar 2 1:00pm

In reply to @lact "I have MGUS, it was found accidentally when I was going through a bunch of bloodwork..." + (show)

Same as you
Go yearly now to hematologist-oncologist for labs.
My results are status quo, so I only need labs once a year.
If results change, I will need more frequent labs.

Ginger, Volunteer Mentor | @gingerw | Mar 2 11:52am

In reply to @lisamichelleely "Thank you, Ginger. This is such an odd condition. It has just sucked all the energy..." + (show)

@lisamichelleely Well, at 70 we usually are not as energetic as we were at 50! Generally, good diet and mindful living can go a long way to helping us. Yes, MGUS can be an odd condition, but as you have read here, many of us live a long time with no progression of this condition. I hope you can wrap your head around the fact that as you have this diagnosis, it doesn't need to be a source of lack of energy. Our minds sometimes play tricks on us, leading us to think the worst of things. It doesn't need to be that way.

What bleeding source are you speaking of? Is this the condition they were testing for when they discovered the MGUS? If so, have they narrowed that down for you?
Ginger

Patty, Volunteer Mentor | @pmm | Mar 2 11:28am

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

I think it's important to run any decision to use OTC medications or supplements by your PCP AND hem/onc physicians. I am fortunate that there is also a PharmD attached to my PCP's clinic who went through all of my current medications and ruled out any potential complications posed by the addition of curcumin to my regimen. I am not otherwise immunocompromised so I have taken 2000 MG of curcumin daily for nearly a year and a half now with good results and no apparent side effects.

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