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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Lupus and multiple myeloma

by Keya on Tue Dec 15, 2015 9:55 am

Glad there is a forum like this for support!

On one side of the family, three people have died from "lupus" and one recently diagnosed with multiple myeloma. I put "lupus" because two of the three had multiple myeloma as cause of death. The thing is two of them were being treated for lupus and not multiple myeloma. Sorry if sounds morbid but that is reality two died in one year and mother and daughter. :(

I was diagnosed with fibromyalgia and have been in pain for about 20 years. The past 4 years have been awful with symptoms changing and being more ill than physical pain. Have been in hospital. Recent visit to rheumatologist after hospital stay and diagnosis of Hashimoto I was put on a trial of prednisone and feel wonderful. No pain. List of changes too long to type here. Not praying my life would end for the past week. Eating without nausea (no feeling full after a few bites), vision not blurry, have lost a little weight but still not going to push being in the sun. Not that brave! :)

The plan is to start Plaquenil. My concern is how to ask my doctor for screening of G6PD, porphyria and multiple myeloma. How hard is multiple myeloma screening? Does medication cause false positives or negatives? I have bad reactions to medicine in the past and this makes me really nervous because of episodes similar to acute porphyria and G6PD that I still have no answer for (avoiding certain foods and sun has helped).

The relatives who died were very young (mid 40s) and I have very similar medical challenges. I mentioned to her before but was afraid to really tell doctor I would like to see 50 (because of other doctors "all in your head" treatment in the past), but she dismissed and said multiple myeloma isn't genetic. I am not sure this is true from my experience – three aunts and a cousin, not in the same environment, different lifestyles, Cherokee (wondering if that is a factor; other relatives died early similar issued but no medical records just verbal history).

My concern is being treated for the wrong disease and/or having treatment activate something more serious. I need to be able to ask the right questions and not be dismissed anymore.

Any suggestions welcome!

Thanks

Oh, no diabetes no high bp and recent iron infusion (got sick with rare side effect but no allergic reactions). This would be the first maintenance medication besides antidepressants I took a while ago. Really scary for me as sometimes medications make me feel worse and so rare side effects doctors say I have only read about this but never actually seen it. Hoping no eye isssues if I end up being clear to take Plaquenil.

Keya

Re: Lupus and multiple myeloma

by Little Monkey on Wed Dec 16, 2015 8:35 am

There are various blood and urine tests your doctor may choose to order to rule out any myeloma.

I have never read any literature suggesting Native Americans are at higher risk of myeloma. I have read, however, that males with African ancestry are at a higher risk of myeloma.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: Lupus and multiple myeloma

by Multibilly on Wed Dec 16, 2015 8:59 am

Hi Keya,

Welcome to the forum.

There are three simple and relatively inexpensive blood tests that can rule out nearly every version of multiple myeloma.

Serum protein electrophoresis
Serum immunofixation
Serum free light chain assay

It's just a quick blood draw at your physician's office.

See this site for a racial breakdown of new cases of multiple myeloma:

http://seer.cancer.gov/statfacts/html/mulmy.html

and then click on "Number of new cases and deaths"

Regarding familial risk, see this link:

https://myelomabeacon.org/forum/does-multiple-myeloma-run-in-families-t4980.html

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Lupus and multiple myeloma

by Keya on Thu Dec 17, 2015 12:13 am

Thank you both for the information.

A woman my aunt knows (also Cherokee and grew up with my aunt) said that she was diagnosed with multiple myeloma by a traditional physician. Her issue was some rare blood disorder that an Elder knew how to treat (who has since passed away of old age).

I know quite possibility apples and oranges but this woman was very ill and you would never know how ill she was. It was many years ago as she is now in her 80s and so is my aunt. She was in her forties when it happened. I have been digging online and can't seem to find any mention of this. Not sure what to think and not jumping to conclusions since I don't have access to her medical records or the Elder she spoke about.

Thanks again!

Keya


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