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Is there anything to help stop or slow progression of MGUS?

Posted by amyboylan1 @amyboylan1, Oct 12 10:14pm

I am wondering if there is anything anyone is doing to stop or slow the progression of MGUS. I m recently diagnosed and have a lot to learn. My oncologist said there is nothing that can be done. Also could some of you share how long you have had MGUS. I am like I’m sure like all of you very concerned about my MGUS processing. Thank you.

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cdeldeo | @cdeldeo | Nov 12 9:52am
In reply to @dondi2101 "I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when..." + (show)
@dondi2101

I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when the hematologist was looking for the reason I was having unexplained roving pain - basically all over the body. My rheumatoid factor was quite high but the rheumatoid doctor said I didn't have rheumatoid arthritis after he examined he; thus being referred to a hematologist. Since then, I have annual monoclonal protein study tests sent to the Mayo Clinic in Rochester. This year's test was a bit different from all the past tests. Have they changed the way testing is done. My main question is did you find taking antihistamines and antacids had an affect on MGUS? My IgA was 87 in Oct '24. My IgG Lambda is .385 which is high. I don't see this type test in previous testing.
Diana

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My IgE was 90000..no one knows why??

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anneschanck | @anneschanck | Nov 12 2:31pm
In reply to @sheryl71 "OH WOW!!!! Congrads I went to see my hematology my levels just go up high but..." + (show)
@sheryl71

OH WOW!!!! Congrads I went to see my hematology my levels just go up high but not to high and then low so its up and down. I don't any kinda of medicine for any of the pain I have I have to live with it day to day. I was by my hematology Dr that MGUS doesn't hurt but I don't know I've been hurting for years and I never have any energy tried all the time . So I had my
Physician run test for Lupus so now the blood levels are high for this also MY SED RATE is 43mm/hr its not suppose to go pass 30mm/hr so now off to see Rheumatologist Dr . So now I'm worried about this because it could either be Lupus which I don't have all the systems or it can be autoimmune disease which is scareds me. I will have to try this diet that your applying too what is the diet would like more information

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I have a gammatonie monoclonale. I have osteoporis since 30 years and i take medis, biphosphonats, prolia and so on. I take this medis since 30 years, then it gets better and after not taking medis it’s bad again. Infeel sick, but nobody is so terribly interested. I would like to do no more anything a live as long as i live!

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Moderator
Colleen Young, Connect Director | @colleenyoung | 3 days ago
In reply to @dondi2101 "I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when..." + (show)
@dondi2101

I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when the hematologist was looking for the reason I was having unexplained roving pain - basically all over the body. My rheumatoid factor was quite high but the rheumatoid doctor said I didn't have rheumatoid arthritis after he examined he; thus being referred to a hematologist. Since then, I have annual monoclonal protein study tests sent to the Mayo Clinic in Rochester. This year's test was a bit different from all the past tests. Have they changed the way testing is done. My main question is did you find taking antihistamines and antacids had an affect on MGUS? My IgA was 87 in Oct '24. My IgG Lambda is .385 which is high. I don't see this type test in previous testing.
Diana

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@dondi2101, I'm bringing @pmm into this discussion too.

Getting results from a different lab may result in variations of testing. It sounds like the Mayo lab results were very thorough. What did your doctor say about the test results? When will you have the next round of lab work done for comparison?

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Mentor
Patty, Volunteer Mentor | @pmm | 2 days ago
In reply to @dondi2101 "I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when..." + (show)
@dondi2101

I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when the hematologist was looking for the reason I was having unexplained roving pain - basically all over the body. My rheumatoid factor was quite high but the rheumatoid doctor said I didn't have rheumatoid arthritis after he examined he; thus being referred to a hematologist. Since then, I have annual monoclonal protein study tests sent to the Mayo Clinic in Rochester. This year's test was a bit different from all the past tests. Have they changed the way testing is done. My main question is did you find taking antihistamines and antacids had an affect on MGUS? My IgA was 87 in Oct '24. My IgG Lambda is .385 which is high. I don't see this type test in previous testing.
Diana

Jump to this post

@dondi2101
Hi Dianna!
All good questions. The chance of progression to MM or SMM is low, so while I don’t worry a lot about it (diagnosed in 2020) much of the reason I don’t worry is that I get medical care from an established Cancer treatment organization with a great reputation. It’s really important to find a treatment provider who treats Multiple Myeloma. You don’t have MM, and we hope you never will, but you want someone who treats patients within the spectrum every day. Think of getting a colonoscopy. You’d want somebody that does two or three a day rather than somebody who does two or three a year, right?
So my first question is why your clinician is sending out your labs? Mayo is the gold standard, so while they do a great job, I wonder why your provider isn’t equipped to process and review those lab results? You definitely need information and to get your questions answered.
Some of our members who live in rural areas have to travel to get a good diagnostic and follow up work up. It’s a pain, but it’s reassuring to get all your questions answered.
Another advantage of being seen in a large, well-established setting is that you have the availability of Ancillary services. Whenever I start a new medication, I always ask for a pharmacy consult so that they can look at any combination of the medication that I’m already taking with the new medication. This includes any over-the-counter supplements that I take. It’s been quite helpful to get their considered opinion. There are many medications that have the potential to impact kidney or liver function. You definitely want your physician to be on top of that and along with your MGUS testing. If there is a pharmacist connected to the hematology/oncology provider, then they are well-versed in this.
I also receive periodic scans to make sure that there are no bone lesions because that indicates progression.
I always feel sad when people can’t get the information that they need from their treatment provider. When you see someone once a year and you get lab results, which are not explained to you that is insufficient and unacceptable. Can you call your provider and ask for a telephone call return or, a telemedicine appointment?
I did a quick search and I did find this about certain medications and multiple myeloma. Nothing specific to MGUS.
https://www.mymyelomateam.com/resources/can-certain-medications-raise-the-risk-for-developing-myeloma
Do you mind sharing a little more about your provider situation? Are you close to a teaching hospital? Cancer treatment center?
I’m really glad you found this group because I always learn from our experienced members I hope there will be an information that is useful to you.

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