Have MGUS and just caught Covid: Did Covid affect your numbers?

Posted by amyboylan1 @amyboylan1, Jun 8 4:54pm

I was just diagnosed with Covid and was diagnosed with MGUS about a year ago. I am wondering if anyone has had Covid with MGUS and how Covid affected your numbers if it did. I appreciate anyone who can respond I am scared.
Thanks, Amy

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Thanks. Can I ask how long you’ve had MGUS and if you know if your supplement is helping.

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Profile picture for amyboylan1 @amyboylan1

Thanks. Can I ask how long you’ve had MGUS and if you know if your supplement is helping.

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I was diagnosed in March 2023 when I mentioned in an annual appointment that I was having some numbness in one of my feet. A med student was assisting the doctor and ran every blood test imaginable! And MGUS showed up. After 6 months on circumin my Mspike actually disappeared but my doctor was firm in saying that it was not gone forever and that it would always go up (and hopefully) down over time. SIx months later (on my blood draw last month) the M spike was back where it had been a year ago but the doctor was not surprised or concerned. Hard to know if it would have been higher without the circumin so I am going to stay on it!

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Profile picture for scalm @scalm

From everything that I have learned, there really isn't anything to do that will absolutely slow progression. The only thing that I decided to try was circumin, which I have read on this site (and others) shows some positive results in SOME people. I am cautious about mega-dosing anything new and checked in with my hematologist before even starting on a low dose. She didn't see a problem with doing that. I can't say whether or not it is helping, but I tolerate a low dose well and figure it can't hurt! (I take Integrative Therapeutics Theracumin HP 600 mg daily. I am considering upping the dose to 900 mg daily.) And you are not alone in your anxiety! This diagnosis was shocking and frightening to me. But I am trying to not have it be the focus of my life and remind myself that "nothing bad is happening". When and if it progresses I will have to deal with it but right now I trust my doctor and she is very reassuring.

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@scalm
I agree that conferring with your hem/onc physician before trying any OTC supplement is important. I did this before adding 1000 mg Curcumin x2 daily to my regimen. I also took my list of prescribed medications in for a consultation with the pharmD connected to my PCP’s clinic. You want to be sure there are no unintended consequences.
Having taken these precautions I jumped in. I’m happy to report that my lab results have been quite stable and since I began the curcumin over a year ago, the slow, steady increased values I was seeing have actually gone down and are now at the same levels they were when I was diagnosed. Yay!
I recently had a major surgery for hip replacement and I’m interested in how this may impact my numbers.
I’ve had Covid twice, both contracted while traveling. I was not as careful as I should have been about masking up in public. After working in a Children’s Hospital and building up pretty much superhuman immunities to all the kiddo germs for so many years, and then surviving a global epidemic, I have to remind myself that I am now a bit vulnerable. We shouldn’t live in fear, but we should not embrace folly.
I’m going again for my six month follow up in a couple of weeks… I will certainly share those results when I get them.
Regarding that curcumin dosage, what indicators will you look for to decide on a dosage that is therapeutic for you?

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Hi Patty. So happy to hear about your numbers! After researching brands and finding one that was highly rated as being bio-available I basically started with the dosage recommended by the maker, which was 600 mg. I had read that research studies were using a much higher dosage but I often have digestive issues when I start on new supplements or meds. I am guessing you are tolerating the 2000 mg/day well! Your story is inspiring me to slowly up my dosage!

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Profile picture for scalm @scalm

From everything that I have learned, there really isn't anything to do that will absolutely slow progression. The only thing that I decided to try was circumin, which I have read on this site (and others) shows some positive results in SOME people. I am cautious about mega-dosing anything new and checked in with my hematologist before even starting on a low dose. She didn't see a problem with doing that. I can't say whether or not it is helping, but I tolerate a low dose well and figure it can't hurt! (I take Integrative Therapeutics Theracumin HP 600 mg daily. I am considering upping the dose to 900 mg daily.) And you are not alone in your anxiety! This diagnosis was shocking and frightening to me. But I am trying to not have it be the focus of my life and remind myself that "nothing bad is happening". When and if it progresses I will have to deal with it but right now I trust my doctor and she is very reassuring.

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@scalm I am on 2000 mg of Qunol Curcumin daily. Before I started, I checked with my oncologist, my PCP, who then referred me to their clinic staff pharmacologist and got approval from all of those people before starting the supplement. I have had success in lowering my numbers or at least keeping them stable. I’ve been doing this for a couple of years now.
There’s a lot to consider including other medications, coexisting conditions, and overall health before you start adding supplements.
I agree with you that there is probably very little one can do to forstall progression if the disease is determined.
I was diagnosed several years ago now and my anxiety is largely abated. When I do get anxious, I remind myself that the right of progression for MGUS is very slow. I am likely at 73, to succumb to something else.
Are you having any other symptoms that you could attribute to your MGUS?

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Profile picture for Patty, Volunteer Mentor @pmm

@scalm I am on 2000 mg of Qunol Curcumin daily. Before I started, I checked with my oncologist, my PCP, who then referred me to their clinic staff pharmacologist and got approval from all of those people before starting the supplement. I have had success in lowering my numbers or at least keeping them stable. I’ve been doing this for a couple of years now.
There’s a lot to consider including other medications, coexisting conditions, and overall health before you start adding supplements.
I agree with you that there is probably very little one can do to forstall progression if the disease is determined.
I was diagnosed several years ago now and my anxiety is largely abated. When I do get anxious, I remind myself that the right of progression for MGUS is very slow. I am likely at 73, to succumb to something else.
Are you having any other symptoms that you could attribute to your MGUS?

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@pmm I was dx. @ age 67 and my numbers so far are low and stable but every 6 months I do get anxious about my blood results. I work 2 days/wk. I have had some fatigue of which not sure if it’s from age or MGUS.
I have been told I would probably succumb to something other than MGUS/MM at my age.
My diet is fairly healthy. I’ve removed extra sugar from my diet the last 10 months. My weakness is exercise and I blame that on my rotator cuff tear pain. Working towards resolving that.
My next blood draw is 11/7. Praying my numbers are better or at least the same.
Best to you.

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Profile picture for jdm02 @jdm02

@pmm I was dx. @ age 67 and my numbers so far are low and stable but every 6 months I do get anxious about my blood results. I work 2 days/wk. I have had some fatigue of which not sure if it’s from age or MGUS.
I have been told I would probably succumb to something other than MGUS/MM at my age.
My diet is fairly healthy. I’ve removed extra sugar from my diet the last 10 months. My weakness is exercise and I blame that on my rotator cuff tear pain. Working towards resolving that.
My next blood draw is 11/7. Praying my numbers are better or at least the same.
Best to you.

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@jdm02 fingers crossed

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Profile picture for jdm02 @jdm02

@pmm I was dx. @ age 67 and my numbers so far are low and stable but every 6 months I do get anxious about my blood results. I work 2 days/wk. I have had some fatigue of which not sure if it’s from age or MGUS.
I have been told I would probably succumb to something other than MGUS/MM at my age.
My diet is fairly healthy. I’ve removed extra sugar from my diet the last 10 months. My weakness is exercise and I blame that on my rotator cuff tear pain. Working towards resolving that.
My next blood draw is 11/7. Praying my numbers are better or at least the same.
Best to you.

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@jdm02

Our stories ( and ages, and rotator cuffs) are very similar. My MGUS diagnosis came after a bout of fatigue. My m-spike numbers are currently .6 and have been slightly increased over the past several years. I’ve had Covid but no discernible increases.
My oncologist is not overly concerned. That said, I cannot overstate the need for exercise. Consider hiring a trainer.

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Profile picture for jdm02 @jdm02

@pmm I was dx. @ age 67 and my numbers so far are low and stable but every 6 months I do get anxious about my blood results. I work 2 days/wk. I have had some fatigue of which not sure if it’s from age or MGUS.
I have been told I would probably succumb to something other than MGUS/MM at my age.
My diet is fairly healthy. I’ve removed extra sugar from my diet the last 10 months. My weakness is exercise and I blame that on my rotator cuff tear pain. Working towards resolving that.
My next blood draw is 11/7. Praying my numbers are better or at least the same.
Best to you.

Jump to this post

@jdm02

I've been at an MGUS stage for about 15 years now. My mother died from MM at my age (67), in 1985. Was diagnosed in late 1983. I get my blood drawn every year to monitor things but was told by THE MM guy at the NIH years ago that he didn't think my MGUS would ever progress to active MM. Still, I wonder about the possibility every year around this time. I'm IgG kappa. Do you know if you've been classified as smoldering MM, kappa or lamda dominant? Have you had a bone marrow test to see if you have a high plasma cell count?

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Profile picture for csrb7007 @csrb7007

@jdm02

Our stories ( and ages, and rotator cuffs) are very similar. My MGUS diagnosis came after a bout of fatigue. My m-spike numbers are currently .6 and have been slightly increased over the past several years. I’ve had Covid but no discernible increases.
My oncologist is not overly concerned. That said, I cannot overstate the need for exercise. Consider hiring a trainer.

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@csrb7007 my 1st M-spike was .13 & decreased to .08 last May. Next blood test is next month.
I had Covid twice, a couple yrs. apart before dx of MGUS. My hematologist isn’t overly concerned at this time either.
My dx. came about from severe osteoporosis & an endocrinologist sent me to the hematologist when I had several low gamma globulin results. Which are now normal.

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