MGUS and Shingles

Posted by sussu @sussu, Mar 18 2:40pm

Three weeks ago I had the shingles.
I had a Chickenpox over 50 years ago. Is there any reason to worry when that virus became active with my MGUS diagnos?
I've had the flu for eight months now. The wrist (radius head) and my back are sore. The doctor's appointment is April 24th. I have astma and allergies also and we got soon the spring here in Finland and I'll not feel very good for a months.
What I have to know and ask when I go to the doctor appointment? She is not the specialist. I'll ask the referral to specialised medical care. But they want to see me first and take some blood tests. If they send me to the specialist, it will take few months to get appointment to the hospital. Does it take too long?

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@sussu welcome to Connect. I was diagnosed with MGUS about three years ago. MGUS is not cancer, but the presence of M paraprotein in my blood. We have many members of Connect who share that diagnosis and we are each unique in how we are impacted by MGUS.
When I was first diagnosed my oncologist/hematologist said that there would probably be no symptoms associated with the MGUS. We “watch and wait” and I get blood analysis every three to six months, bone scans looking for lesions and other diagnostic testing. Most primary care physicians know very little about MGUS it seems.
The risk of progression to smoldering multiple myeloma, or multiple myeloma, is very low, although some of us are overachievers in this regard.
I do not feel as though I am immunocompromised, and I am not susceptible to colds and other viral illnesses.
The key is getting a good oncologist/hematologist and I don’t know how your medical system works there, but it took me a couple of months to get to see one after my primary care physician made the referral. That was a time during which I felt a lot of anxiety because of course I got on the Internet and did a lot of reading. I don’t recommend that. You will know much more after you talk to the hematologist/oncologist. She may order more comprehensive testing which will give you much better information. Since the “treatment“ is not actually treatment, but monitoring your health, this delay was not harmful to me, but it did increase my stress.
I try to be pragmatic about my MGUS diagnosis. My health is monitored frequently and efficiently, and I feel as though I get better healthcare than anyone I know.
I don’t know how it works in your healthcare system, but advocate for yourself to the extent that you can. If they can expedite your appointment, or if your physician can go ahead and refer you to hematologist/oncologist, that might cut your wait time for getting the best information.
I’m glad that you connected and will you will get back to me and let me know how this journey is going for you?

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I was diagnosed with MGUS almost 3 years ago. I had shingles May of 2023 despite having had the latest version of the vaccine. I felt a bit like I won the bad lottery but when I questioned whether it might be related to the MGUS no one conclusively supported it. I do have a good oncologist so I trust the opinion.

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My MGUS was 8 years ago. I'm not immunocompromised because the deranged plasma cells (I prefer that to precancerous) are not at significant levels to cause problems. I get shingles vaccines to prevent shingles (had Chickenpox 60 years ago). I doubt there is any relationship between MGUS and other diseases, other than the 1% chance/year of getting SMM, MM, or associated. If someone is immunocompromised from MGUS or other conditions then there is higher risk of catching colds, flu, and other bacteria, virus, yeast, etc infections.

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The article below states that MGUS may be associated with bone loss and debilitating skeletal complications. I had osteopenia before I was diagnosed with MGUS. Did the MGUS cause the osteopenia? I don’t know.

The article recommends that the status of your bones be evaluated. This can be done rather crudely with a skeletal x-ray survey, more precisely with a PET/CT scan and MRI for spine and pelvis. Please ask your doctors to evaluate your bones. If your bones are damaged, there are things that can be done to strengthen and repair them. This will eliminate your pain.

“Recent studies have suggested the association of MGUS with enhanced bone loss and debilitating skeletal complications, particularly vertebral compression fractures (VCFs) often leading to back pain. Early identification of MGUS and evaluation of bone status will facilitate prophylactic treatment with bisphosphonates to increase bone density and likely reduce the risk of fractures as well as identify patients with VCFs who might benefit from early surgical intervention. With proper diagnostic and treatment strategies, these patients will experience improved outcomes and quality of life.”

https://pubmed.ncbi.nlm.nih.gov/19717382/#:~:text=It%20is%20an%20asymptomatic%20premalignant,often%20leading%20to%20back%20pain.
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@aczatx47131

The article below states that MGUS may be associated with bone loss and debilitating skeletal complications. I had osteopenia before I was diagnosed with MGUS. Did the MGUS cause the osteopenia? I don’t know.

The article recommends that the status of your bones be evaluated. This can be done rather crudely with a skeletal x-ray survey, more precisely with a PET/CT scan and MRI for spine and pelvis. Please ask your doctors to evaluate your bones. If your bones are damaged, there are things that can be done to strengthen and repair them. This will eliminate your pain.

“Recent studies have suggested the association of MGUS with enhanced bone loss and debilitating skeletal complications, particularly vertebral compression fractures (VCFs) often leading to back pain. Early identification of MGUS and evaluation of bone status will facilitate prophylactic treatment with bisphosphonates to increase bone density and likely reduce the risk of fractures as well as identify patients with VCFs who might benefit from early surgical intervention. With proper diagnostic and treatment strategies, these patients will experience improved outcomes and quality of life.”

https://pubmed.ncbi.nlm.nih.gov/19717382/#:~:text=It%20is%20an%20asymptomatic%20premalignant,often%20leading%20to%20back%20pain.

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Bloodwork can also aid in detecting bone lesions associated with MGUS, SM, MM. Elevated levels of calcium suggest leaching of minerals from bone. I have early osteoporosis (I'm 69) so have had 3 Reclast infusions to increase bone density (I also lift weights and similar stuff). Here is an article on how the medicine may help bone resorption with MGUS: https://pubmed.ncbi.nlm.nih.gov/18829511/

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