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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Autoimmune and Autonomic Nervous System

by WeatherNurse13 on Thu Oct 10, 2013 11:50 am

I was wondering if an autologous stem cell transplant (melphalan) can trigger autoimmune and/or ANS dysfunction.

I have two different rashes (one started before Revlimid and one just started) with the first one thought to be an autoimmune response, granuloma annulare. The second one is still unknown. The nurse practitioner told me not to worry about it. :?

Three months after my SCT I started have a HR of 150 upon rising and could feel my heart race. Subsequently my oncologist put me on metoprolol and that has helped tremendously. Still I do have times when my heart rate is up over 130 and when I get up and walk, occasionally feeling lightheaded.

My transplant doctor has written my increased heart rate as anxiety. Thank God my oncologist listened to me and treated the problem. I don't know what I would do without him. My primary doctor is the one who suggested that my atuonomic nervous system took at hit through my myeloma and it's treatment.

I came across information on this forum about autoimmune dysautonomia and then through research postural orthostatic tachycardia syndrome. I thinking that these could all be related. Any thoughts or similar experiences?

I should mention that my mother is positive for the Rheumatoid Factor and my daughter has Raynaud's disease with Undifferentiated Connective Tissue Disorder, with a + SCL70.

Trying to make sense of all these crazy symptoms. I see my oncologist in two weeks.

WeatherNurse13
Name: Gracie
Who do you know with myeloma?: Self
When were you/they diagnosed?: 10/2012
Age at diagnosis: 49

Re: Autoimmune and Autonomic Nervous System

by lys2012 on Thu Oct 10, 2013 12:29 pm

I don't really have an answer for you, but I can share my experience. I was diagnosed with autoimmune thyroid disease three years after my transplant. (Hashimoto thyroiditis) my own body is attacking my thyroid. I started thyroid replacement and feel good, a lot of the symptoms I though were myeloma related went away! (constipation, nueropathy, fatigue etc)

The only thing my oncologist said was while thyroid dysfunction is not that uncommon after chemo, the fact that it is autoimmune is rare since that makes my immune system overactive(but she did speculate it might have been something I had before my cancer and just didn't know about, which is the most likely case)

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Autoimmune and Autonomic Nervous System

by lys2012 on Thu Oct 10, 2013 12:32 pm

when I was sick I had the heart racing issues you describe. finally figured out it was related to low blood counts (anemia) and low blood pressure. When my counts improved it got better, but I also had to continue to take about three litres of fluid a day! Many of the drugs also give me low blood pressure so when I stood up, heart would pound to try and get the blood moving!

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Autoimmune and Autonomic Nervous System

by WeatherNurse13 on Thu Oct 10, 2013 1:19 pm

Thanks for your replies.

The thyroid answer would certainly work for the autoimmune and heart, but I had my thyroid removed 13 years ago for benign tumors.

My lab results are all normal for me, and I am drinking lots of water each day. I only drink water and milk.

I just don't know what to think about all this.

WeatherNurse13
Name: Gracie
Who do you know with myeloma?: Self
When were you/they diagnosed?: 10/2012
Age at diagnosis: 49


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