Where to begin ...
From the beginning, I suppose. My daughter who is almost 15 was on Accutane (isotretinoin) for about six weeks when she broke out in hives all over her body except her face. Her dermatologist ordered a bunch of blood work to figure out what it was or if it was a reaction to the Accutane (I don't really know that there is such a test). Due to her having abdominal pain, I checked in with pediatrician that same morning and she added on one more test to the order. Mycoplasma pneumoniae. She said she didn't think that is what she had, but she said several kids have had it recently through her office (not with skin rash, but respiratory symptoms) But just to be sure. Off to draw blood. And wait.
Same evening her abdominal pain shot up. Ended up in ER. Ultrasound confirmed ovarian cyst that was pretty significant. But due to history of family having appendicitis, they told us to come back in 10-12 hours for a CT scan to make sure it wasn't that. It was not.
We did discontinue Accutane.
Few days pass and we get blood work results and sure enough her IgG and IgM for Mycoplasma were three times the norm. Was put on Z-Pak (azithromycin) and rash cleared up. I still did not continue Accutane (she has bad cystic acne).
We were referred to her allergist due to the hives and were told he is also an immunologist. I gave him pictures of everything and a history. He ordered some more tests and a recheck of the Mycoplasma and said do the blood work 2-3 weeks out.
What came back was that the Mycoplasma IgM and IgG were higher than before. Not by much, but from what I have read, one of those numbers should go down over time.
Also, her Immunoglobulin A was elevated, Not G or M. So he ordered more tests. Serum beta 2 microglobulin (852x), albumin, protein total, protein electrophoresis, with total protein reflex to IFE, serum and urine with kappa/lambda light chains.
The lambda light chains were elevated and so we are waiting for a referral to a hematologist.
In the mean time, for maybe two years she has suffered from anxiety and now depression (I know about Accutane so I don't need the run down on that, I took it at her age with no problems). She is in a program for the summer for this and was put on Cymbalta (duloxetine) a week ago, 20 mg, even though I told them we are waiting for more tests due to all of this.
What else could be going on that would cause a 15 year old to have elevated lambda light chains in her blood?
What can we expect at the hematologist?
The Immunologist thought it a good idea for her to see the hematologist rather than him ordering more tests because the hematologist would know more.
Is it possible that they just re-run the same tests six or so weeks later to see if it was just something screwy?
Thank you for any and all info you can give me.
Tiffany
Forums
Re: 15 year old with elevated lambda free light chains
Hi Tiffany,
Sorry to hear all the things your daughter has been through. Accutane is strong stuff. The drug shares with thalidomide the dubious honor of being one of the first drugs the FDA required to have a special program -- a "REMS", or "Risk Evaluation and Mitigation Strategy" -- to make absolutely certain people taking the drug are aware of the potentially very serious side effects.
There are many things other than myeloma or "myeloma-like" diseases that can cause both an elevated IgA level and an elevated lambda free light chain level. Here are a few questions you should try to have answered either before you get to the hematologist, or when you are at the hematologist.
1. Did any of the immunofixation or protein electrophoresis tests show signs of monoclonal protein (also called paraprotein, M-protein, or an abnormal protein band)?
2. What exactly was the lambda light chain level (with units), what is the reference (normal) range for the lambda result, and was the lambda light chain level from a blood (serum) free light chain test?
3. What is the kappa / lambda ratio that was measured during the light chain test, and what is the normal range given for that ratio.
If you have answers to any of these questions, there are people here in the forum who can give you more advice based on the additional information you provide.
I should emphasize, however, that the chance that your daughter has anything myeloma-related at her age is very, very, very slim.
Good luck!
Sorry to hear all the things your daughter has been through. Accutane is strong stuff. The drug shares with thalidomide the dubious honor of being one of the first drugs the FDA required to have a special program -- a "REMS", or "Risk Evaluation and Mitigation Strategy" -- to make absolutely certain people taking the drug are aware of the potentially very serious side effects.
There are many things other than myeloma or "myeloma-like" diseases that can cause both an elevated IgA level and an elevated lambda free light chain level. Here are a few questions you should try to have answered either before you get to the hematologist, or when you are at the hematologist.
1. Did any of the immunofixation or protein electrophoresis tests show signs of monoclonal protein (also called paraprotein, M-protein, or an abnormal protein band)?
2. What exactly was the lambda light chain level (with units), what is the reference (normal) range for the lambda result, and was the lambda light chain level from a blood (serum) free light chain test?
3. What is the kappa / lambda ratio that was measured during the light chain test, and what is the normal range given for that ratio.
If you have answers to any of these questions, there are people here in the forum who can give you more advice based on the additional information you provide.
I should emphasize, however, that the chance that your daughter has anything myeloma-related at her age is very, very, very slim.
Good luck!
Re: 15 year old with elevated lambda free light chains
Hi Tiffany,
Welcome the forum. Terry asks some really good questions that will make it easier for folks to help you once we know the answers. Accutane (isotretinoin) is indeed strong stuff and you can fairly easily find references to folks that developed mycoplasma pneumonia as result of being on that drug.
Infections, including pneumonia can elevate light chain numbers.
Also note that IgA, IgG and IgM have "half-lives" of about 1 month. That is, once one of these immunoglobulins is elevated, it will take about a month for the excess immunoglobulin to dissipate by 50%. So, it will definitely take time for the IgA to normalize back down to a normal level (provided that one's body isn't still producing excess immunoglobulins because of an infection, etc ). On the other hand, FREE light chain levels can normalize in a matter of hours.
I bet that the hematologist will in fact suggest re-running some of the tests in a couple of months (as you suggested). As Terry said, the chances of this being multiple myeloma or a related disorder are extremely remote, so I wouldn't worry about that possibility.
Welcome the forum. Terry asks some really good questions that will make it easier for folks to help you once we know the answers. Accutane (isotretinoin) is indeed strong stuff and you can fairly easily find references to folks that developed mycoplasma pneumonia as result of being on that drug.
Infections, including pneumonia can elevate light chain numbers.
Also note that IgA, IgG and IgM have "half-lives" of about 1 month. That is, once one of these immunoglobulins is elevated, it will take about a month for the excess immunoglobulin to dissipate by 50%. So, it will definitely take time for the IgA to normalize back down to a normal level (provided that one's body isn't still producing excess immunoglobulins because of an infection, etc ). On the other hand, FREE light chain levels can normalize in a matter of hours.
I bet that the hematologist will in fact suggest re-running some of the tests in a couple of months (as you suggested). As Terry said, the chances of this being multiple myeloma or a related disorder are extremely remote, so I wouldn't worry about that possibility.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: 15 year old with elevated lambda free light chains
Thank you for your responses. I read them last week when you posted and will go back over them. We were out of town. No computer. Yesterday I finally got the referral and they are sending her to UCLA. In the process of trying to set the appointment up, I had to call our insurance company to make sure we were being sent to the right place because it is quite far from where we live. The person had to contact our insurance group and then got back on the phone and said yes this is the best place considering the scenario. Again, I don't have her labs in front of me. We are headed out again for a few days. My daughter is dealing with anxiety and depression and she wants to go to the beach. For her to even want something is a good thing.
She is on Cymbalta as of about 12 days now. We upped the dose. We are seeing progress. I know this has nothing to do with her blood but the reason I am posting it is also to let you know multiple things are going on. I want to get her back on minocycline for her acne. She is using adapalene topically which seems to be helping but she really needs something along with it.
I just don't get it. I'm hoping that maybe the Accutane caused this and it is a temporary thing. She is not complaining of any pain anymore. I think the Cymbalta may be playing a part in that. I know if you have depression you can have physical pain. She isn't even complaining about her back hurting anymore. She has scoliosis and was complaining a lot up until about a week ago.
Hoping for a fluke and things will go back to normal. It has been well over a month since she stopped the Accutane.
Her appointment is on the 26th. I'll try to get labs from the immunologist before then. I will just walk in or call first and ask for them.
Thanks again,
Tiffany
She is on Cymbalta as of about 12 days now. We upped the dose. We are seeing progress. I know this has nothing to do with her blood but the reason I am posting it is also to let you know multiple things are going on. I want to get her back on minocycline for her acne. She is using adapalene topically which seems to be helping but she really needs something along with it.
I just don't get it. I'm hoping that maybe the Accutane caused this and it is a temporary thing. She is not complaining of any pain anymore. I think the Cymbalta may be playing a part in that. I know if you have depression you can have physical pain. She isn't even complaining about her back hurting anymore. She has scoliosis and was complaining a lot up until about a week ago.
Hoping for a fluke and things will go back to normal. It has been well over a month since she stopped the Accutane.
Her appointment is on the 26th. I'll try to get labs from the immunologist before then. I will just walk in or call first and ask for them.
Thanks again,
Tiffany
Re: 15 year old with elevated lambda free light chains
I have the test results.
Wish there were copy-paste or I could post a screen shot! Only posting abnormal info. But there were a lot of things tested.
Albumin 3.7 L 3.8-4.8 range
Immunoglobulin A 405 H 57-300 range
Lambda 171 H 32-156 range (this doesn't seem alarming or cause to be sent to UCLA)
Due to the fact that she has the mycoplasma infection or had it (not sure if you can ever get rid of it), could that be the cause of Immunoglobulin A to be elevated?
Mycoplasma Pneumoniae Antibody (IGG) >5.00 H Reference Range <.90
Mycoplasma Pneumoniae Antibody (IGM) 1538 H Reference Range <770
Immunoglobulin A at the time of this test was 414 H Ref Range 57-300
If I post the kappa number, can someone figure out the ratio? Is that beneficial to know?
thanks
Tiffany
Wish there were copy-paste or I could post a screen shot! Only posting abnormal info. But there were a lot of things tested.
Albumin 3.7 L 3.8-4.8 range
Immunoglobulin A 405 H 57-300 range
Lambda 171 H 32-156 range (this doesn't seem alarming or cause to be sent to UCLA)
Due to the fact that she has the mycoplasma infection or had it (not sure if you can ever get rid of it), could that be the cause of Immunoglobulin A to be elevated?
Mycoplasma Pneumoniae Antibody (IGG) >5.00 H Reference Range <.90
Mycoplasma Pneumoniae Antibody (IGM) 1538 H Reference Range <770
Immunoglobulin A at the time of this test was 414 H Ref Range 57-300
If I post the kappa number, can someone figure out the ratio? Is that beneficial to know?
thanks
Tiffany
Re: 15 year old with elevated lambda free light chains
Tiffany,
The important test relative to whether this might be a plasma cell disorder or not is the serum immunofixation test that Terry mentioned earlier. Did they run that test? If so, what were the results?
The important test relative to whether this might be a plasma cell disorder or not is the serum immunofixation test that Terry mentioned earlier. Did they run that test? If so, what were the results?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: 15 year old with elevated lambda free light chains
Looking over the results, I found this:
Immunofixation, serum see note.
Reference Range: No monoclonal proteins detected
Immunofixation studies revealed one trace concentration band(s) migrating in the gamma region which was/were of too low a concentration to definitively identify.
Beta 2 microglobulin, serum 2.04
Adults: < or = 2.51
<18 Years: Not established
Immunofixation, serum see note.
Reference Range: No monoclonal proteins detected
Immunofixation studies revealed one trace concentration band(s) migrating in the gamma region which was/were of too low a concentration to definitively identify.
Beta 2 microglobulin, serum 2.04
Adults: < or = 2.51
<18 Years: Not established
Re: 15 year old with elevated lambda free light chains
So, that's good news with regard to the immunofixation test! This means that the excess IgA and lambda free light chains are polyclonal (normal) in nature and are likely elevated due to an infection or some other cause other than a plasma cell disorder. I'm not a doc, but the pneumonia seems like one of the more obvious potential causes of a polyclonal increase in one's IgA and free light chains. This is also probably why your doctor wasn't alarmed and why there isn't any follow up scheduled at UCLA.
But again, I'm not a doc, so please verify all this with your doc.
But again, I'm not a doc, so please verify all this with your doc.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: 15 year old with elevated lambda free light chains
These are the results that prompted us to be sent to UCLA.
Re: 15 year old with elevated lambda free light chains
Ah, I misunderstood your reference to UCLA. Sorry about that. In any case, it looks like this isn't a plasma cell disorder (myeloma, etc) given the immunofixation results. If you want to provide us with the kappa number, it's quite easy to calculate the free light chain ratio. The ratio along with the kappa and lambda numbers might provide further confirmation that this is a polyclonal increase of an immunoglobulin.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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