Hi,
Has anyone got any experience of having Sjogren's syndrome and smoldering multiple myeloma both at the same time?
tia x
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mandyf63 - Name: mandyf63
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Sjogren's syndrome and smoldering myeloma
Yes, I was diagnosed with Sjogren's. I have MGUS, but my plasma cell level in my bone marrow is 10% and my M-spike is 2.9 g/dL (29 g/L), so I am venturing on the smoldering myeloma.
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8oclockcoffee - Name: Brenda
- Who do you know with myeloma?: Myself, Father, Aunt, and Grandfather
- When were you/they diagnosed?: 08-2013
- Age at diagnosis: 47
Re: Sjogren's syndrome and smoldering myeloma
I was diagnosed with Sjogren's syndrome when I was about 30 although I had had symptoms of dry mouth and dry eyes for several years prior to my diagnosis. In December, 2014 at age 59 I was diagnosed with myeloma and again had had symptoms for at least 3 years prior to my diagnosis.
I believe there is a strong correlation between certain autoimmune diseases and myeloma. I know that people with primary Sjogren's syndrome (pSS) have a 40% higher risk for non-Hodgkins lymphoma but the risk for pSS terminating in multiple myeloma is also coming to light. Why that is, I don't know, but my guess would be chronic inflammation leading after many years to a cancerous state.
I also believe that a lack of sex hormones (in my case, I was born with only one ovary) can lead to Sjogren's since most women with the disease are not diagnosed until post-menopause. I guess I feel lucky that I went almost 40 years before I developed multiple myeloma.
BTW, my Sjogren's was manageable for the most part with artificial tears, 16-hour gum chewing, and rest, although I had to use a microphone to teach during my teaching career and ultimately change to small group instruction because I could no longer project my voice. I also dealt with a fair amount of fatigue and worked only half-time the last ten years of my career. I also had lots of trouble with viruses, and colds would result in coughs that lasted several months.
My advice to anyone who has Sjogren's is to get an SPEP. Despite having elevated protein levels for at least 3 years prior to diagnosis, my multiple myeloma was discovered so late that my bones were riddled with lytic lesions.
Most PCPs do not have multiple myeloma on their radar, so you have to be a strong advocate. Inform your doctor about your higher risk for NHL and/or multiple myeloma if you have Sjogren's!
I believe there is a strong correlation between certain autoimmune diseases and myeloma. I know that people with primary Sjogren's syndrome (pSS) have a 40% higher risk for non-Hodgkins lymphoma but the risk for pSS terminating in multiple myeloma is also coming to light. Why that is, I don't know, but my guess would be chronic inflammation leading after many years to a cancerous state.
I also believe that a lack of sex hormones (in my case, I was born with only one ovary) can lead to Sjogren's since most women with the disease are not diagnosed until post-menopause. I guess I feel lucky that I went almost 40 years before I developed multiple myeloma.
BTW, my Sjogren's was manageable for the most part with artificial tears, 16-hour gum chewing, and rest, although I had to use a microphone to teach during my teaching career and ultimately change to small group instruction because I could no longer project my voice. I also dealt with a fair amount of fatigue and worked only half-time the last ten years of my career. I also had lots of trouble with viruses, and colds would result in coughs that lasted several months.
My advice to anyone who has Sjogren's is to get an SPEP. Despite having elevated protein levels for at least 3 years prior to diagnosis, my multiple myeloma was discovered so late that my bones were riddled with lytic lesions.
Most PCPs do not have multiple myeloma on their radar, so you have to be a strong advocate. Inform your doctor about your higher risk for NHL and/or multiple myeloma if you have Sjogren's!
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kate a
Re: Sjogren's syndrome and smoldering myeloma
Hi there,
I have smoldering myeloma based on light chain levels and bone marrow biopsy and was diagnosed with Sjogren's due to high ANA titer when everything else was ruled out.
My symptoms were mainly dry eyes. My eye doctor put plugs in and it helps a lot. They have meds to help with dry mouth if that is an issue for you. They also have a medication that slows the progression of Sjogren's but I got a bad rash from that and had to discontinue.
Good luck to you!
I have smoldering myeloma based on light chain levels and bone marrow biopsy and was diagnosed with Sjogren's due to high ANA titer when everything else was ruled out.
My symptoms were mainly dry eyes. My eye doctor put plugs in and it helps a lot. They have meds to help with dry mouth if that is an issue for you. They also have a medication that slows the progression of Sjogren's but I got a bad rash from that and had to discontinue.
Good luck to you!
4 posts
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