I know bone thinning / osteoporosis / osteopenia in a 51 year old is not rare, but I'm just wondering if this might fall into "risk" factor.
I'm MGUS, but the bone scan indicates osteopenia. I'm also premenopausal. I've not had a bone marrow test done yet (doctor thinks it unnecessary).
I know most of you are in much more precarious situation than I, but I vacillate between not worrying and then thinking I need to be much more vigilant.
Just can't find anything on the internet, so maybe I'm wrong about bone thinning being a possible sign to do more testing.
Thanks all!
Forums
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
Both osteopenia and osteoporosis can occur as a result of MGUS.
"Multiple Myeloma, Smoldering Multiple Myeloma, And MGUS May Be Linked To Osteoporosis," The Myeloma Beacon, May 24, 2010.
It's a good idea to monitor these bone loss conditions with a DEXA scan from time to time, regardless if one has MGUS, smoldering myeloma or multiple myeloma. I get one yearly. DEXAs are quick and easy to do.
This is also just another reason I would suggest getting a BMB and the other complete tests for multiple myeloma (as several others also stated in the earlier posts, where I recall that one of the docs on this forum also suggested you get one).
If your doc isn't on board with doing the additional tests, you might want to seek out a multiple myeloma specialist that will oblige. Please be clear that you can't say your diagnosis is definitively MGUS without first having the results of these other tests.
"Multiple Myeloma, Smoldering Multiple Myeloma, And MGUS May Be Linked To Osteoporosis," The Myeloma Beacon, May 24, 2010.
It's a good idea to monitor these bone loss conditions with a DEXA scan from time to time, regardless if one has MGUS, smoldering myeloma or multiple myeloma. I get one yearly. DEXAs are quick and easy to do.
This is also just another reason I would suggest getting a BMB and the other complete tests for multiple myeloma (as several others also stated in the earlier posts, where I recall that one of the docs on this forum also suggested you get one).
If your doc isn't on board with doing the additional tests, you might want to seek out a multiple myeloma specialist that will oblige. Please be clear that you can't say your diagnosis is definitively MGUS without first having the results of these other tests.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
Hi Toni, I would just urge you to seek help for thinning bones, since there are treatments available that could help the bones from becoming fractured. Your family doctor could advise you on this, as well as could a myeloma specialist. And of course, you should be careful not to lift anything very heavy! Osteopenia is a common problem, it's good to treat it before it gets into the category of osteoporosis, IMO. (Just my point of view actually.)
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
Thank you both.
It's a little embarrassing but I've actually been having a lot of problems with my memory since last summer and I find it very difficult to understand things. I keep forgetting that both of you and the doctor online said the same thing. Why do I feel guilty for questioning my doctor? I feel like, oh, I have nothing to complain about and so many people on these forums have so much more going on in their lives...
And I'm trying not to be one of those, "oh, you know, my case is different....poor me" kind of people. So I haven't brought up that we do live in a rural environment and getting any kind of decent health care has been and continues to be an uphill climb.
We live in rural Wisconsin. I'm not too far from Madison or Milwaukee though - less than two hours from each, so it does make quite a bit of planning when I need to go to either place. My husband travels, we have small children, etc.
Unfortunately, my insurance does not cover for Madison. I have been seeing a doctor by the Illinois border. So somehow I need to find out if there's any kind of myeloma specialist in my insurance plan out of Milwaukee. I had started looking online this week, but I naturally started with Madison when I realized that wasn't going to work with the insurance. So now I need to look to Milwaukee and see if I can find something that will work.
So, thank you both for your patience and perseverance with me. And feel free to give me a kick in the derriere to stay on the right track
It's a little embarrassing but I've actually been having a lot of problems with my memory since last summer and I find it very difficult to understand things. I keep forgetting that both of you and the doctor online said the same thing. Why do I feel guilty for questioning my doctor? I feel like, oh, I have nothing to complain about and so many people on these forums have so much more going on in their lives...
And I'm trying not to be one of those, "oh, you know, my case is different....poor me" kind of people. So I haven't brought up that we do live in a rural environment and getting any kind of decent health care has been and continues to be an uphill climb.
We live in rural Wisconsin. I'm not too far from Madison or Milwaukee though - less than two hours from each, so it does make quite a bit of planning when I need to go to either place. My husband travels, we have small children, etc.
Unfortunately, my insurance does not cover for Madison. I have been seeing a doctor by the Illinois border. So somehow I need to find out if there's any kind of myeloma specialist in my insurance plan out of Milwaukee. I had started looking online this week, but I naturally started with Madison when I realized that wasn't going to work with the insurance. So now I need to look to Milwaukee and see if I can find something that will work.
So, thank you both for your patience and perseverance with me. And feel free to give me a kick in the derriere to stay on the right track
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
Nancy brings up a good point about treating for the osteopenia as you sort out access to a specialist. A family doc should be able to help you out with a bisphosphonate drug such as Zometa (note that calcium & vitamin D supplements by themselves and / or oral bisphosphonates like Boniva generally won't cut it for treatment of bone loss due to various stages of multiple myeloma). You could explore this with your family doc as you sort out things with your current hematologist and insurance.
Fractures can be extremely debilitating, especially since they tend to occur in the lower spine with various stages of multiple myeloma.
Fractures can be extremely debilitating, especially since they tend to occur in the lower spine with various stages of multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
Yes, and I apologize for being so 'hyper' about bone health! Having fractures did make a lasting impression, and of course we hear about it all the time in the world of myeloma patients. But it is an area of health that I think gets overlooked sometimes. Good luck to you, Toni. Thanks Multibilly for all of your research also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
MG - you bring up a great point about doing this now while trying to seek specialists. Plus, how did I forget MGUS puts you at higher risk for fractures? I had read that article, but for some reason re-reading I saw it clearly. Thank you. I already have osteopenia in the L1, not to mention both hips.
Nancy - and thank you for being persistent. Without a more serious diagnosis, I forget how devastating fractures can be and you have put my focus back in the right place.
So I will call my regular doctor on Monday and make an appointment to get on bisphosphonates. (IV, right?). Unfortunately, his wife, a casual friend of mine, succumbed to multiple myeloma a few years ago, so perhaps he will listen more carefully to me to help me get the help I need.
God bless you both - you do so much to help others on this forum!
Nancy - and thank you for being persistent. Without a more serious diagnosis, I forget how devastating fractures can be and you have put my focus back in the right place.
So I will call my regular doctor on Monday and make an appointment to get on bisphosphonates. (IV, right?). Unfortunately, his wife, a casual friend of mine, succumbed to multiple myeloma a few years ago, so perhaps he will listen more carefully to me to help me get the help I need.
God bless you both - you do so much to help others on this forum!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
I think I found a myeloma specialist! And I think he's about 1 to 1 1/2 hours away. I'll call on Monday.
I will probably have him order the BMB too.
I'm very happy to have found a qualified individual. Of course, maybe I should wait until Monday to find out how long it will actually be to get in to see him.
Thank you
I will probably have him order the BMB too.
I'm very happy to have found a qualified individual. Of course, maybe I should wait until Monday to find out how long it will actually be to get in to see him.
Thank you
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
Dear Toni,
I am glad you found a myeloma specialist.
Regarding the osteopenia, I assume you had a bone survey -- that is, plain xrays and not a bone scan, which is a nuclear medicine study used in other cancers. Subtle but important difference. Also the bone survey (plain xray) is not designed to evaluate for osteopenia or osteoporosis, so I would not accept that you have a diagnosis of osteopenia based on a bone survey or recommend therapy based on this test.
You need a dexa scan, which is to evaluate for osetopenia or osteoprosis.
I also agree with the bone marrow biopsy to know if this is smoldering multiple myeloma (and whether there is a need for closer followup) as opposed to MGUS.
All the best
I am glad you found a myeloma specialist.
Regarding the osteopenia, I assume you had a bone survey -- that is, plain xrays and not a bone scan, which is a nuclear medicine study used in other cancers. Subtle but important difference. Also the bone survey (plain xray) is not designed to evaluate for osteopenia or osteoporosis, so I would not accept that you have a diagnosis of osteopenia based on a bone survey or recommend therapy based on this test.
You need a dexa scan, which is to evaluate for osetopenia or osteoprosis.
I also agree with the bone marrow biopsy to know if this is smoldering multiple myeloma (and whether there is a need for closer followup) as opposed to MGUS.
All the best
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Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
Re: Is osteoporosis / osteopenia a risk factor in MGUS?
Dr. Shah: Thank you for commenting on this post. You are right to ask about having the proper scan done to diagnose osteopenia/osteoporosis. I am happy to report that I did have the dexa scan and this is where the diagnosis came from.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
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