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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@yo2

correction... i was typing < 0 % not 0.

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Are they saying you need a biopsy every 3-4 months or just blood tests?

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I have severe osteoporosis (on Evenity x 9 months) and my Kappa/Lambda ratio was 2.01 (just tested). My CBC values were all normal except my Monocytes relative percent was slightly high at 12.6%.
I have had random tingling at random times throughout body. I do go to the bathroom 2 -4 times during the night.
CT scan a few years back showed a small kidney stone.
My Endo said that the ratio is only slightly elevated and to retest the blood in a few months.
Thoughts?

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Good morning, I woke up this morning with my 3rd uti since June 15/23. My urologist wanted to get me off my daily low dose antibiotics that I've been on for 3 years. He put me on estrogen suppositories and told me to also take Cranberry to prevent. He said 2-3 uti's in a year would be acceptable, anything more would warrant a call back. I was diagnosed in April with light-chain mgus and I asked him at my June 1/23 appointment if it would be causing my constant uti's and he said absolutely. I'm 47/female. My ratio in April was 1.20

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@shescomeundone

Good morning, I woke up this morning with my 3rd uti since June 15/23. My urologist wanted to get me off my daily low dose antibiotics that I've been on for 3 years. He put me on estrogen suppositories and told me to also take Cranberry to prevent. He said 2-3 uti's in a year would be acceptable, anything more would warrant a call back. I was diagnosed in April with light-chain mgus and I asked him at my June 1/23 appointment if it would be causing my constant uti's and he said absolutely. I'm 47/female. My ratio in April was 1.20

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Thank you for sharing your experince about MGUS and the connection with UTIs, @shescomeundone! This may be very helpful for @sjgray who has recurring urinary tract infections and wondering if there’s a relationship.
Have you seen any improvement with the estrogen suppositories and cranberry? What form of cranberries…juice, supplements?

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@loribmt

Thank you for sharing your experince about MGUS and the connection with UTIs, @shescomeundone! This may be very helpful for @sjgray who has recurring urinary tract infections and wondering if there’s a relationship.
Have you seen any improvement with the estrogen suppositories and cranberry? What form of cranberries…juice, supplements?

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Have not tried estrogen suppositories yet. I have become resistant to 7-8 antibiotics. Am taking a probiotic and off of antibiotics right now. I think that I still have an UTI, so I call next week for a pathnastics test. I will ask about low dose antibiotic, I don't know the solution to this. I also suffer from interstitial cystitis
(30 yrs.). I have tried cranberry juice and gummies. Didn't seem to work. Thank you for reaching out. It's nice to chat with a fellow mgus
er.

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I have developed a Canker Sore on my right upper inside jaw. I have read, these can be caused by a low resistance to infections. Does the M factor have anything to do with this? Or is it a lack of Vitamins like B12? How do I get rid of it. The Trigeminal Neuralgia primarily affects the left lower Jaw. Enough! Enough!
Gina5009

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@loribmt

Thank you for sharing your experince about MGUS and the connection with UTIs, @shescomeundone! This may be very helpful for @sjgray who has recurring urinary tract infections and wondering if there’s a relationship.
Have you seen any improvement with the estrogen suppositories and cranberry? What form of cranberries…juice, supplements?

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No improvement at all. 3 recurrences in 5 weeks. I want to go back on the antibiotics and spare myself the pain. Cranberry supplements.

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@sjgray

Have not tried estrogen suppositories yet. I have become resistant to 7-8 antibiotics. Am taking a probiotic and off of antibiotics right now. I think that I still have an UTI, so I call next week for a pathnastics test. I will ask about low dose antibiotic, I don't know the solution to this. I also suffer from interstitial cystitis
(30 yrs.). I have tried cranberry juice and gummies. Didn't seem to work. Thank you for reaching out. It's nice to chat with a fellow mgus
er.

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@sjgray I am resistant to everything but nitrofurtonin (sp). The urologist did a scope to look for interstitial cystitis but said I don't have it. I was looking at the TV screen and asked what are all those red dots (covering the entire lining of my bladder) and he said cysts, probably caused by the constant infection.

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@shescomeundone

No improvement at all. 3 recurrences in 5 weeks. I want to go back on the antibiotics and spare myself the pain. Cranberry supplements.

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Oh that’s so disheartening! Many years ago I had a chronic UTI as well and was on low Bactrim for over a year. But prior to that I’d gone through years of issues but no one could find the culprit.
Finally, with a new urologist, the doctor zoned in on the answer. I had a scope of my urethra and bladder to rule out any issues inside. They did a 5 day culture of my urine and a swab of my urethra.
The culture provided the answer with a bacterial growth that wouldn’t show up in a rapid test or even the 3 day culture. It was explained to me that there are microscopic folds of tissue in our urethra that can hold bacteria.
Even though I’d been on Bactrim and a plethera of other meds before, it was suggested to try this low dose for a year because it was the antibiotic that killed the samples in the Petri dish.
It work for me. Have you had a 5 day culture run?

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I also have MGUS, and go to hematologist/oncologist every 6 mos for follow up.
My labs are the same, no worse, and I’ll be seen again in 6 mos.
That’s all I know about MGUS.

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