Type of Lupus?

For about two years I've been dealing with symptoms that cycle - itchy skin (legs, abdomen, chest), rash (abdomen, chest), achy and stiff joints (mainly knees, hips, back, neck, wrists), blurry vision, low-grade fevers, extreme fatique.  At first the symptoms would last for about a week, then leave for a couple weeks.  As time goes on, there are less good days than there are bad days - typically 3-4 days of symptoms, then just general fatique and achiness for a couple days.  

Blood work is all normal except for a small consistent amount of monoclonal protein.  I do get frequent UTI's, have low blood pressure, and am low in potassium.  A recent bone marrow biopsy showed no sign of cancer or development of myeloma.  Years ago I was tested for lupus and the ANA came back indicating lupus, but since the symptoms were subtle at that time, they did not treat me for lupus.  All tests since then come back negative for lupus.

Despite normal test results in re: to lupus, is it still a possibility, and is there a connection between lupus and monoclonal protein that can explain my symptoms?

Thank you

[SickMomma_PDX]

Hi there!

I was planning to come back today anyway because I dug through some paperwork to find the name of that test, which was Free Light Chain, serum ASSAY. You can read about it on the International Myeloma Foundation's website at http://myeloma.org/pdfs/UnderstandingFreeLight.pdf (hoping the link will come through for you ...otherwise just google free light chain serum myeloma and you'll find it.)

My numbers on that came back suggesting the risk of my developing Multiple Myeloma was so low that my hematologist oncologist said I don't even need to be tested for my monoclonal protein levels, despite the fact that they were incrementally increasing when I had it tested a couple times per year over the past three years. Mind you, I'm not entirely sure I'm willing to take that risk and not ever get tested again, but I am comfortable enough to just let my PCP send the tests out and not go see the specialist unless something else develops.

What kind of doctors are you seeing? Are they rheumatologists? Everything I have heard on boards like this or read about doing research for myself suggests that the doctors telling you that a single negative ANA definitively rules out Lupus are just plain wrong. In fact, the Lupus Foundation of America says, "All of this information may be necessary for a doctor to make a diagnosis of lupus because, for a number of reasons, laboratory tests alone cannot give a definite "yes" or "no" answer.

    * No single laboratory test can determine whether a person has lupus.
    * Test results that suggest lupus can be due to other illnesses, or can even be seen in healthy people.
    * A test result may be positive one time and negative another time.
    * Different laboratories may produce different test results."

So those docs who say that a negative ANA rules it out definitively are WRONG and you are NOT crazy. :-) Which means you shouldn't hesitate to look for another doctor! Please forgive my emphasis there, but so many doctors seem to go out of their way to make limbolanders feel like they're crazy and imagining their illness(es).

From what I understand, however, even with a good, open-minded rheumy, it can take years from onset of illness until diagnosis. :-( It doesn't happen that way for everyone, of course, and I hope you and I are *both* close to diagnosis! :-)

My non-medical-background understanding is that Plaquenil is a med usually tried first with Lupus patients because most people can tolerate it with few side effects. It's an anti-malarial that works differently than some of the other meds, like methrotrexate (sp?). I was among the minority who can't tolerate it, but my rheumy says responding well to it can sometimes be used to make a doc more confident of his/her diagnosis of Lupus. YMMV, but it might be worth asking your PCP or someone more supportive than the specialists you've been seeing about trying it and whether s/he thinks it might help your symptoms without (much) risk of aggravating other stuff.

I would be *very* interested in what you learn about from Mayo, and if you can find that link again to that 2006 study because I definitely haven't come across it! My extended family has been pushing me to go to Mayo in search of Dx, and I'm seriously considering it. Thanks! (Oh, you probably already know this, but Mayo is the place that came up with the Dx of MGUS.)

Good luck, and please do let me know what happens!

[geminigirl1963]

I can't comment on the protein, however, I can tell you that yes, it's possible that you do have lupus despite negative blood work.  When I was diagnosed with lupus, it took I think 5 rounds of testing before I tested positive - my doctor told me that this is quite common to happen, and many things i've heard and read about lupus since then confirm his statement.

I also would definitely consider this a distinct possiblity since you've already testing with a positive ANA for lupus - no matter how subtle your symptoms were at the time.  Lupus symptoms can do that - be almost nil for a while and then BAM hit you like  aton of bricks.  They can also differ from flare to flare - one time affecting your joints, the next time affecting something else.

I hope you feel better soon!

[MC4314]

Thank you for the response.  One of the things that's been frustrating in regard to finding a diagnosis is that so many doctors disagree on what constitutes a diagnosis of lupus.  The latest doctor that I saw stated it is impossible to have lupus without a positive ANA.  She also said that onset absolutely has to happen during childhood, that lupus does not show up in adult-hood, and she did no further testing other than relying on the previous negative ANA test.  That leaves me confused since there are many people diagnosed with lupus that actually have negative ANA's.  

I'm also curious if the test results are swayed by when the test is done or by the presence of monoclonal protein.  For example, if tested during a flare or when I am pretty much symptom-free.  Whatever this is, it's quite elusive.  Test results just don't seem right.  For example, they did the bloodwork during a flare which included the usual symptoms as well as a severe rash, redness, fever, and significant swelling.  Despite those observable symptoms, tests for inflammation came back negative stating no inflammation what-so-ever.  I get the impression that the test results aren't very reliable in regard to coming up with a diagnosis in my case since there seems to be some false negative's going on.  Is it common for test results to be skewed with auto-immune disorders?

[SickMomma_PDX]

Yep, this is the reason that many autoimmune diseases are very hard to diagnose, particularly if you're not a "classic" textbook case for it. :-(

The doc who thinks you have to test positive for Lupus in childhood is confusing it with juvenile rheumatoid arthritis, I think! (And I think even that is occasionally not diagnosed until adulthood, depending on how you classify adulthood.) Crazy! Especially since one of the most common times (as much as any time is common) to get diagnosed with Lupus is within a year or so of when a woman gives birth. I think teen moms have enough to deal with without Lupus. :-)

It sounds to me like you need to keep looking for the right rheumatologist. Even the ideal rheumy won't necessarily diagnose you instantly, but s/he should at least be willing to watch and wait. It certainly sounds like you'd meet the criteria for 4 of the 11 identifiers for Lupus. And I think the positive ANA in your past should outweigh the more recent negative ANAs. But of course, I'm not an MD ...

FWIW, I have that monoclonal protein like you, and for me it's pretty much just been a red herring in my search for a diagnosis. Like you, I have low blood pressure and low potassium; I've never been told those are significant with MGUS but that doesn't mean it isn't. My hematologist recently did a newer blood test on me that's supposed to be a fairly accurate predictor of whether the monoclonal protein will simply remain at MGUS levels or if it is likely to grow into Multiple Myeloma. I'm blanking on what the name of the test is ... sorry. :-(

Oh, and also fwiw, next time you expect to have your ANA or other lupus tests done, try spending an hour or so in the sun a few hours before you go in for the blood draw. For a lot of people, it seems to make their levels spike.

Good luck! I hope you get a diagnosis, and some treatment,SOON!

[MC4314]

Thank you so much - I'm sorry to hear that you're dealing with the same thing, but glad to hear that my case isn't that rare!  I'd love to know the test that you had in regard to the likelihood of MGUS turning into multiple myeloma.  One of my fears in regard to this possibly being lupus is that the treatment for lupus, in my opinion, could add fuel to the fire of the potential development of myeloma.  But, not treating whatever this is just isn't an option since the symptoms are escalating quickly.  

Each of the ANA tests I had done that came back negative were done on "good days", and every doctor I ask swears that if this is lupus, then the test will be positive on a good or bad day - I'm not sure if I believe that though.    

My doctor is arranging a referral to Mayo Clinic, so hopefully I'll get in sometime in the next few weeks.  I had found a study a while back done in 2006 that talked about a rare form of lupus that involves slightly elevated levels of monoclonal protein, but for the life of me can't find it again!  I will definitely let you know if I find it and what Mayo has to say about all of this since there are some similarities in our cases.

[SickMomma_PDX]

Hi there!

I was planning to come back today anyway because I dug through some paperwork to find the name of that test, which was Free Light Chain, serum ASSAY. You can read about it on the International Myeloma Foundation's website at http://myeloma.org/pdfs/UnderstandingFreeLight.pdf (hoping the link will come through for you ...otherwise just google free light chain serum myeloma and you'll find it.)

My numbers on that came back suggesting the risk of my developing Multiple Myeloma was so low that my hematologist oncologist said I don't even need to be tested for my monoclonal protein levels, despite the fact that they were incrementally increasing when I had it tested a couple times per year over the past three years. Mind you, I'm not entirely sure I'm willing to take that risk and not ever get tested again, but I am comfortable enough to just let my PCP send the tests out and not go see the specialist unless something else develops.

What kind of doctors are you seeing? Are they rheumatologists? Everything I have heard on boards like this or read about doing research for myself suggests that the doctors telling you that a single negative ANA definitively rules out Lupus are just plain wrong. In fact, the Lupus Foundation of America says, "All of this information may be necessary for a doctor to make a diagnosis of lupus because, for a number of reasons, laboratory tests alone cannot give a definite "yes" or "no" answer.

    * No single laboratory test can determine whether a person has lupus.
    * Test results that suggest lupus can be due to other illnesses, or can even be seen in healthy people.
    * A test result may be positive one time and negative another time.
    * Different laboratories may produce different test results."

So those docs who say that a negative ANA rules it out definitively are WRONG and you are NOT crazy. :-) Which means you shouldn't hesitate to look for another doctor! Please forgive my emphasis there, but so many doctors seem to go out of their way to make limbolanders feel like they're crazy and imagining their illness(es).

From what I understand, however, even with a good, open-minded rheumy, it can take years from onset of illness until diagnosis. :-( It doesn't happen that way for everyone, of course, and I hope you and I are *both* close to diagnosis! :-)

My non-medical-background understanding is that Plaquenil is a med usually tried first with Lupus patients because most people can tolerate it with few side effects. It's an anti-malarial that works differently than some of the other meds, like methrotrexate (sp?). I was among the minority who can't tolerate it, but my rheumy says responding well to it can sometimes be used to make a doc more confident of his/her diagnosis of Lupus. YMMV, but it might be worth asking your PCP or someone more supportive than the specialists you've been seeing about trying it and whether s/he thinks it might help your symptoms without (much) risk of aggravating other stuff.

I would be *very* interested in what you learn about from Mayo, and if you can find that link again to that 2006 study because I definitely haven't come across it! My extended family has been pushing me to go to Mayo in search of Dx, and I'm seriously considering it. Thanks! (Oh, you probably already know this, but Mayo is the place that came up with the Dx of MGUS.)

Good luck, and please do let me know what happens!

[MC4314]

Thank you for getting the name of that test for me - I'll talk to my doctor about it within the next two weeks.

The doctors working on my case are an internal med specialist, infectious disease (mainly to address the fever issue), a rheumatologist, dermatologist, and an oncologist/hematologist is overseeing everything.  I am happy with the doctor overseeing my case (oncologist/hematologist) since he seems to be the most agressive and assertive about this - he feels confident that this is a rheumatology/auto-immune issue despite the rheumatologist ruling out the possibility.  I'm glad that he's referring me to Mayo and appreciate his being humble in admitting that he can't figure this out and is looking elsewhere for answers.  

As I said before, I'm concerned about how they will treat this (if they do go ahead with a lupus dx) since monoclonal protein is present.  I was told that there currently are no FDA approved medications for lupus and that meds like plaquenil simply suppress the immune system - to me, that's playing with fire since the development of myeloma is a possibility.  I really wish there was more research out there regarding the correlation between monoclonal protein and illnesses like lupus!

[MC4314]

I found a study through Mayo Clinic that looks at the correlation between MGUS and other conditions such as lupus.  It doesn't give definitive answers, but it gives answers none-the-less (sometimes that's the best we can hope for!).  It did refer to the correlation between lupus and MGUS as coincidental (while warranting further study to be sure), but did give information/caution regarding treatment options when the two of them occur at the same time.

http://www.mayoclinicproceedings.com/content/84/8/685.full#T2

[SickMomma_PDX]

Wow -- thanks for digging that up! I'm going to have to spend some time digesting it. Meanwhile, that link somehow (and I'm not exactly sure -- maybe the footnotes?) led me to another very interesting (to me :-) link:

http://bloodjournal.hematologylibrary.org/cgi/content/full/116/7/1020

One thing that jumped out to me was this: "Patients with low-risk MGUS can also have concomitant autoimmune or chronic viral illnesses that result in the production of a small clonal protein that has little or no chance of clinical sequelae [...]"

I'm really glad you're seeing a hem/onc. He's the one to really understand the possible problems you might face. And it's clear that he's taking it seriously since you had a bone marrow biopsy. (I havne't had one of those, although I've had a lumbar puncture during my search for a diagnosis.)

Any idea when you'd be going to the Mayo Clinic? Will you go to the one in Rochester? I think I mentioned that I'm pondering going that route too. I look forward to hearing what you think of the experience!!

[TrudieC]

I had a positive ANA and then negative.  My doctor wasn't sure if I had developing RA or Lupus but put me on plaquenil.  I did see an improvement however I continued having all over body pain, itching, foggy brain, etc.  Finally he admitted that I had fibromyalgia as well and put me on Lyrica.  The lyrica made a big difference and the itching I'd had for so long was gone.  It is common to get fibro along with other auto-immune issues so do ask them to check you for that as well.

[MC4314]

Thank you for the information.  For a while, one of my doctors was leaning towards a diagnosis of fibromyalgia, but then the labwork came back showing monoclonal protein and he backed off of the diagnosis right away and handed my case over to the hematologist/oncologist.  I'm not sure if having the mgus rules out fibromyalgia or if they just felt they had bigger fish to fry, so to speak.  I will ask about this when I go to Mayo.

Also, I'd be interested to know if you experience fevers - mine are usually low-grade.  From what I've read there is contradicting research regarding whether fibromyalgia can cause fevers.  It is interesting that it can cause effects of inflammation that are elusive to labwork since I have obvious observable inflammation yet bloodwork finds no indication.

One of my concerns is that something will get overlooked - my other concern is that the treatment for whatever this is will add fuel to the fire for the mgus.  I would be highly concerned about taking plaquenil for my symptoms since I don't want to suppress the immune system given the presence of monoclonal protein.  

Again, thank you for the information - lots more questions to add to my list for the doctor!