Hi everyone.
While I'm waiting for the results of my bone marrow biopsy, I've been spending probably more time than I should on Google, trying to understand this very confusing illness. And I just saw something about elevated sedimentation ("sed") rates being potentially indicative of multiple myeloma.
I have somehow missed that fact (or blew it off) during this past year that I've been seeing a rheumatologist due to very bad joint pain and a sed rate of 85. I've been treated for a year for arthritis with no decrease in the pain and only a slight decrease in my sed rate. Over the past year, my sed rate tests have been 85/80/60/73 and 50.
I decided to get a second opinion from another rheumatologist, and she ran new bloodwork and found that I had an M-spike of 1.37 g/dL. An inconclusive bone scan and a rapid increase in my M-Spike from 1.37 to 2.19 in 2 weeks resulted in the biopsy. I will find out on the 24th those results.
But I'm really curious what sort of sed rate is common prior to a diagnosis of either MGUS or multiple myeloma.
Has anyone else gone the arthritis route with a rheumatologist only to have it turn out to be myeloma?
Thanks so much, Mike
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MJW2208 - Name: Mike
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 5/2014, SMM 5/2017
- Age at diagnosis: 55
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
Hi Mike
My ESR was 75 on diagnosis. I have myeloma and amyloidoisis. My myeloma was detected in "relatively early stages". My consultant told me that for many myeloma patients, their ESR rate is well over 100. I have read many times that RA can cause a high ESR.
Hope everything works out okay for you.
Alice
My ESR was 75 on diagnosis. I have myeloma and amyloidoisis. My myeloma was detected in "relatively early stages". My consultant told me that for many myeloma patients, their ESR rate is well over 100. I have read many times that RA can cause a high ESR.
Hope everything works out okay for you.
Alice
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AliceNorth
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
Since I worked in a small private lab, I ran my count and sed rate when I started to feel like something was not right. This was in December 2004, my count was normal with maybe a few more lymphs than normal, but my sed rate was 58. I thought that maybe I was getting the flu.
The next sed rate was higher, but nothing really happened until April 2005, when I had a broken vertebrae. X-ray confirmed that further labs were needed, which showed I had an increased total protein and m-spike of 2.7. My sedimentation rate really continued to be elevated, never under 60mm. When the red blood cells were settling, you could visually see Rouleau formation as well as on the slide. In addition, my hemoglobin dropped from 11.8 to 9.7.
Many things were happening in a short time, but an increased sed rate does indicate inflammation.
The next sed rate was higher, but nothing really happened until April 2005, when I had a broken vertebrae. X-ray confirmed that further labs were needed, which showed I had an increased total protein and m-spike of 2.7. My sedimentation rate really continued to be elevated, never under 60mm. When the red blood cells were settling, you could visually see Rouleau formation as well as on the slide. In addition, my hemoglobin dropped from 11.8 to 9.7.
Many things were happening in a short time, but an increased sed rate does indicate inflammation.
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lorettamm2005
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
Hello:
It was because of a sed rate of 50 for over a year that I was sent to a rheumatologist who did extensive diagnostic blood work. It was then that we found the M spike of 1.2 g/dL [12 g/L]. After a bone marrow biopsy and full skeletal survey, it was determined that I had MGUS.
My sed rate for the past 5 years since diagnosis has remained in the 50's. I have also experienced joint pain which has now been diagnosed to be gouty arthritis.
It is my understanding that the "sticky blood" we have as a result of the abnormal protein circulating can stick together, causing the sed rate to remain high as a result.
Sending good vibes your way for good results at your next doctor appointment!
Debbie
It was because of a sed rate of 50 for over a year that I was sent to a rheumatologist who did extensive diagnostic blood work. It was then that we found the M spike of 1.2 g/dL [12 g/L]. After a bone marrow biopsy and full skeletal survey, it was determined that I had MGUS.
My sed rate for the past 5 years since diagnosis has remained in the 50's. I have also experienced joint pain which has now been diagnosed to be gouty arthritis.
It is my understanding that the "sticky blood" we have as a result of the abnormal protein circulating can stick together, causing the sed rate to remain high as a result.
Sending good vibes your way for good results at your next doctor appointment!
Debbie
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
Hi Everyone,
I've been looking for a post about sedimentation rate, rheumatoid arthritis, and MGUS. In May my sed rate was 85 {up from the usual 36} My M spike was 0.19. My hematologist-oncologist sent me for more tests and five weeks later I came back positive for rheumatoid arthritis, but with an M spike of 0.46 and an elevated gamma globulin of 1:90. My sed rate was 83.
I spoke to my rheumatologist on the phone and she says the rheumatoid arthritis is a false positive.
I'm pretty nervous now, with the elevated sed rate and higher M spike. My oncologist "dismissed" me, saying the sed rate is from rheumatoid arthritis, but I have read that a positive rheumatoid arthritis test result can be the result of malignancy.
I have to see my rheumatologist and have more tests done.
I'm so afraid my MGUS is progressing, and my oncologist doesn't seen to notice.
Anyone else have any thoughts on this?
Thanks for listening. My brother died from multiple myeloma two years ago, so I'm a wreck.
Sami
I've been looking for a post about sedimentation rate, rheumatoid arthritis, and MGUS. In May my sed rate was 85 {up from the usual 36} My M spike was 0.19. My hematologist-oncologist sent me for more tests and five weeks later I came back positive for rheumatoid arthritis, but with an M spike of 0.46 and an elevated gamma globulin of 1:90. My sed rate was 83.
I spoke to my rheumatologist on the phone and she says the rheumatoid arthritis is a false positive.
I'm pretty nervous now, with the elevated sed rate and higher M spike. My oncologist "dismissed" me, saying the sed rate is from rheumatoid arthritis, but I have read that a positive rheumatoid arthritis test result can be the result of malignancy.
I have to see my rheumatologist and have more tests done.
I'm so afraid my MGUS is progressing, and my oncologist doesn't seen to notice.
Anyone else have any thoughts on this?
Thanks for listening. My brother died from multiple myeloma two years ago, so I'm a wreck.
Sami
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
I was diagnosed with MGUS about 6 years ago, I have had joint pain for many years, My sedimentation rate was normal until last year and for several months has been 105 or so. I am being referred to a rheumatologist.
I called the oncologist who follows the MGUS and her answer was that the elevated sed rate had nothing to do with the MGUS. However, I also have read that it sometimes shows up with multiple myeloma and also with metastatic cancer.
It is a bit troubling, but so far I have not developed past the MGUS stage as far as I know.
I called the oncologist who follows the MGUS and her answer was that the elevated sed rate had nothing to do with the MGUS. However, I also have read that it sometimes shows up with multiple myeloma and also with metastatic cancer.
It is a bit troubling, but so far I have not developed past the MGUS stage as far as I know.
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Maine1956
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
My sed rate was up to 125 prior to diagnosis. I did have shingles and think that may have something to do with it. I have not had it tested since my multiple myeloma diagnosis in June.
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Memakes4 - Name: Nancy
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 69
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
Hello,
Like several other folks here, I also had a high sed rate (though I don't remember what the number was).
That high sed rate came during a regular blood test performed by my allergist. Based on that, he had me see my PCP, who ran some more tests. After those tests, he referred my to a hematologist / oncologist who did more tests. Those led to a diagnosis of MGUS in 2009. That progressed to smoldering myeloma in 2010 and then to symptomatic multiple myeloma in 2013.
I was very fortunate to have an allergist and a PCP who dug deeper into what was going on with the simple high sed rate. The early diagnosis allowed me to be monitored so that I got treatment early on when I needed it.
Mike
Like several other folks here, I also had a high sed rate (though I don't remember what the number was).
That high sed rate came during a regular blood test performed by my allergist. Based on that, he had me see my PCP, who ran some more tests. After those tests, he referred my to a hematologist / oncologist who did more tests. Those led to a diagnosis of MGUS in 2009. That progressed to smoldering myeloma in 2010 and then to symptomatic multiple myeloma in 2013.
I was very fortunate to have an allergist and a PCP who dug deeper into what was going on with the simple high sed rate. The early diagnosis allowed me to be monitored so that I got treatment early on when I needed it.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
This is so interesting to me. In 2013-2015 I was referred to a rheumatologist for a high sed rate. Nobody could figure out why. The doctor thought I had early signs of lupus. I stopped seeing him because nothing was ever accomplished at the appointments.
Fast forward to May 18, 2018. I was diagnosed with multiple myeloma. I asked my oncologist if the high sed rate I had years ago could have been a sign, and they said no.
I beg to differ. In my opinion, they should’ve done more testing back then, and I may have been able to catch this sooner than being diagnosed at stage 3 and high risk.
Fast forward to May 18, 2018. I was diagnosed with multiple myeloma. I asked my oncologist if the high sed rate I had years ago could have been a sign, and they said no.
I beg to differ. In my opinion, they should’ve done more testing back then, and I may have been able to catch this sooner than being diagnosed at stage 3 and high risk.
Re: Sed rate prior to MGUS or multiple myeloma diagnosis
High sed rate is an interesting topic. I too have lived with high sed rate. I also have Crohn's disease, so we really always just attributed it to that, however my sed rate has been pretty high (well over the 100 mark) without having Crohn's "symptoms".
I recall many times my gastro doctor would call concerned and ask how I was doing after receiving my high numbers and I had been feeling the "same" as usual. I do wonder now if all of that inflammation created other issues. Knowing what I know now, I wish at the time I had stopped taking my 6mp (6-mercaptopurine), since it was definitely not helping my bone marrow.
I recall many times my gastro doctor would call concerned and ask how I was doing after receiving my high numbers and I had been feeling the "same" as usual. I do wonder now if all of that inflammation created other issues. Knowing what I know now, I wish at the time I had stopped taking my 6mp (6-mercaptopurine), since it was definitely not helping my bone marrow.
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
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