Hello all,
I was diagnosed with smoldering myeloma in November 2017. I had been a keen runner, cyclist, and swimmer when in the of summer 2016 I developed terrible foot pain that developed into neuropathy and horrendous body pains.
After working through all the “ologys” at the hospital, a blood test done by the rheumatologist found I had paraproteins in the blood. This led me to the haematologist. I had a bone marrow biopsy and it showed crazy activity. I also have had a full-body MRI that showed I have no cancer clusters in the bones and the kidney was fine.
However, the haematologist still feels I have an autoimmune disorder as well as the myeloma. Is it common to have an autoimmune disorder with smoldering multiple myeloma?
I am being referred back to rheumatologist for more tests and to go back to haematologist in 3 months.
Forums
8 posts
• Page 1 of 1
Re: Smoldering multiple myeloma with autoimmune disorder?
Hello Spitfire,
Welcome to the forum. You will find looks of valuable information here. I too am smoldering, diagnosed in September 2017, with bone marrow results of 30-40%
I believe quite a few people have additional health issues along with their multiple myeloma. My autoimmune disease is Crohn's disease for 30 years, and my endocrinologist believes I have Hashimoto's disease (my sister had it at a very young age), but it isn't ready to be treated yet. This past summer I also had my parathyroid gland removed. I've had other issues, but they wouldn't fall under the topic you are inquiring about.
I have struggled with lots of inflammation and take a bunch of supplements to try to combat that.
I am not sure where you are located, but it would be good to get yourself set up with a myeloma specialist. Stay exercising. Hopefully you will be one of the lucky ones who smolders for a long time.
Eileen
Welcome to the forum. You will find looks of valuable information here. I too am smoldering, diagnosed in September 2017, with bone marrow results of 30-40%
I believe quite a few people have additional health issues along with their multiple myeloma. My autoimmune disease is Crohn's disease for 30 years, and my endocrinologist believes I have Hashimoto's disease (my sister had it at a very young age), but it isn't ready to be treated yet. This past summer I also had my parathyroid gland removed. I've had other issues, but they wouldn't fall under the topic you are inquiring about.
I have struggled with lots of inflammation and take a bunch of supplements to try to combat that.
I am not sure where you are located, but it would be good to get yourself set up with a myeloma specialist. Stay exercising. Hopefully you will be one of the lucky ones who smolders for a long time.
Eileen
-
Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Smoldering multiple myeloma with autoimmune disorder?
Hello Spitfire!
You will find several people here in the forum with autoimmune disorders who are at some point in the multiple myeloma spectrum. My wife has several autoimmune disorders and is still MGUS for almost 3 years, but with an above the range IgG and below the range IgM.
You will find several people here in the forum with autoimmune disorders who are at some point in the multiple myeloma spectrum. My wife has several autoimmune disorders and is still MGUS for almost 3 years, but with an above the range IgG and below the range IgM.
-
LuvHiking - Name: LuvHiking
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Waiting for diagnosis
- Age at diagnosis: 50
Re: Smoldering multiple myeloma with autoimmune disorder?
Hello all,
I have Hashimotos and MGUS. Just new to this. I am also a breast cancer survivor.
I have Hashimotos and MGUS. Just new to this. I am also a breast cancer survivor.
-
robinblessed54 - Name: Robin
- Who do you know with myeloma?: Me/MGUS
- When were you/they diagnosed?: January 2018
- Age at diagnosis: 63
Re: Smoldering multiple myeloma with autoimmune disorder?
Yes, I have a few autoimmune conditions and just was diagnosed with smoldering multiple myeloma.
I’ve been hypothyroid for around 20 years, had early menopause in my mid thirties, have vitiligo, and have adhesive capsulitis (aka frozen shoulder).
I’ve been hypothyroid for around 20 years, had early menopause in my mid thirties, have vitiligo, and have adhesive capsulitis (aka frozen shoulder).
-
BethBurn - Name: Mel Jones
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2018 - Smoldering
- Age at diagnosis: 53
Re: Smoldering multiple myeloma with autoimmune disorder?
I was diagnosed with MGUS in 2003, then smoldering multiple myeloma in 2017. I've had Sjogren's syndrome since 2011 and Hashimoto's since 2015.
-
glnsf
Re: Smoldering multiple myeloma with autoimmune disorder?
In a work up of peripheral neuropathy last fall, I was found to have smoldering myeloma. At the same time, I was also diagnosed with small vessel vasculitis. The rheumatologist started me on oral Cytoxan (cyclophosphamide) for the vasculitis, which also helped with my labs for smoldering myeloma.
-
Jeff G
Re: Smoldering multiple myeloma with autoimmune disorder?
I was diagnosed with Hashimoto's in 1984. I was diagnosed with rheumatoid arthritis (RA) in 2005 despite testing negative for the RA factor. My eye doctor firmly believes I have Sjogren's but hasn't ordered tests because he would treat with artificial tears regardless. In 2016 a rheumatologist ordered a test that checks 12 biomarkers of RA and measures the amount of disease activity present. The results showed moderate RA activity. Because I have immunodeficiency due to MGUS / smoldering myeloma, treatment options are limited due to many RA treatments being immunosuppressive, and we are trying to keep my immune system awake and functioning.
In 2017 I was diagnosed with bilateral carpal tunnel, despite having had a carpal tunnel repair on my right hand about 15 years ago. I have numbness and tingling in both hands. I had my left hand repaired in 2017 but have not had my right hand repaired again.
In 2017 I was diagnosed with protruding discs in my spine, degenerative disc disease, spondylolisthesis, and stenosis. Currently I am not receiving any treatments for any of the autoimmune diseases except taking Synthroid for Hashimoto's.
I would love to learn how autoimmune issues relate to or contribute to the world of myeloma, if they do at all. I find it fascinating that so many myeloma patients also have autoimmune disorders. There seems to be some sort of connection, but what is it? Maybe if we learned what the connection is someone could find a treatment to break the connection!
In 2017 I was diagnosed with bilateral carpal tunnel, despite having had a carpal tunnel repair on my right hand about 15 years ago. I have numbness and tingling in both hands. I had my left hand repaired in 2017 but have not had my right hand repaired again.
In 2017 I was diagnosed with protruding discs in my spine, degenerative disc disease, spondylolisthesis, and stenosis. Currently I am not receiving any treatments for any of the autoimmune diseases except taking Synthroid for Hashimoto's.
I would love to learn how autoimmune issues relate to or contribute to the world of myeloma, if they do at all. I find it fascinating that so many myeloma patients also have autoimmune disorders. There seems to be some sort of connection, but what is it? Maybe if we learned what the connection is someone could find a treatment to break the connection!
-
sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
8 posts
• Page 1 of 1