[lupinelady]

Possibility of MGUS at young age (26)

by lupinelady on Thu May 22, 2014 6:50 am

Hi everyone,

I'm confused about the results of some recent lab work, and am not sure if it's really necessary to follow up on it with a specialist or just leave it alone and forget about it!

Some background/medical history: I was diagnosed with lupus (SLE) in 2009 with severe CNS involvement, which was treated with cyclophosphomide for a year (2010-2011). I also have Sjogren's, Reynaud's phenomenon, ehlers danlos (classic type), degenerative disc disease, restless leg syndrome, hypothyroidism, and asthma.

In August, my rheumatologist was concerned about possibly having amyloidosis (because I have a swollen, "scalloped" tongue - a little hyperbolic if you ask me!). I had low levels of IgG and IgM (517 mg/dL and 15 mg/dL respectively), a normal kappa/lambda ratio at 0.52, but no M-spike. The pathologist's note said there was a presence of monoclonal free lambda light chains and suggested a urine IFE for Bence Jones protein, but no follow up blood work was ordered.

This month, a different rheumatologist ordered similar blood work. This time I had an M spike of 0.06 in the gamma region. My IgG and IgM stayed at relatively similar levels (516 mg/dL and 14 mg/dL), and, while still in the normal range, my IgA levels dropped from 111 to 99. The pathologist noted that there is a possible IgG lambda monoclonal gammopathy and that a hematology follow up was required. However, the rheumatologist said that I'm just predisposed to infection and left it at that.

I know that's a very low M spike, and that it's good that my free light chain ratio is normal. But I can't find very much on MGUS diagnosis at a young age and whether or not it's important to know if I have it. I'm not particularly concerned, but I do like to be informed about the diseases I have (or don't!).

I have bone pain (possibly from avascular necrosis - xrays to confirm soon) and neuropathy (numbness/tingling in hands and arms) already from lupus, so it would be hard to know when to be concerned (if I DO have MGUS) if it progresses to multiple myeloma.

So basically, I don't know if it's at all necessary to follow up with a hematologist (the division in my practice is hem/onc) or just shrug it off.

Any advice would be much appreciated! Thanks!

[ADUK]

Re: Possibility of MGUS at young age (26)

by ADUK on Thu May 22, 2014 8:14 am

Hello

I'm also young (30), and it was found that I have a small IgG lambda M spike last autumn. I'm always keeping my eyes on this website for other young people in the same situation as the news unsettled me (given that MGUS is rare in young people).

I seem to have something autoimmune going on as well - I have psoriasis and a positive ANA.

My first doctor (in the UK) did not think it was necessary to refer me as it was an incidental finding as a result of testing for something else. However, after conducting further research and in order to be able to go ahead with IVF treatment I decided to be referred and everything came back fine, like you I also have a normal free light chain ratio.

I'm glad I was referred as it gave me some peace of mind. I'd go and see the heamotologist if I were you, hopefully it will put your mind at rest.

[Multibilly]

Re: Possibility of MGUS at young age (26)

by Multibilly on Thu May 22, 2014 8:25 am

Hi Lupinelady,

Here's my two cents.

Although rare, people of your age actually can and do develop multiple myeloma.

You are right that your M-Spike is very low and it is great that your serum FLCs are normal.

But, if there is a suspicion of MGUS, I would personally be getting tested for it by a hematologist that specializes in multiple myeloma just so I know where things stand.

While the chance of MGUS evolving into a malignant disease is about 1%/year, the chance of it developing into multiple myeloma sometime in your lifetime obviously is greater than 1% (i.e. you have a 10% chance of it evolving to multiple myeloma over 10 years).

If your MGUS evolves into multiple myeloma and causes debilitating bone damage or other organ damage simply because you weren't on top of it, you would regret it. But if you are getting tested for it every year or so, you could easily avoid that situation.

So, I would suggest not ignoring it, but to instead clearly understand where things are and to then take comfort in the knowledge that you very well may not evolve to having multiple myeloma in your lifetime (assuming that you do have MGUS, which is yet to be determined).

Now having said all this, I am in no way qualified to say if any of the other diseases you have may be the reason you have a small monoclonal spike. But my understanding is those that have Sjorgens are more predisposed to having a monoclonal gammopathy associated with it. But only a doc can make this determination.

[lupinelady]

Re: Possibility of MGUS at young age (26)

by lupinelady on Thu May 22, 2014 9:13 am

Thanks guys. Much appreciated insight. I'll probably bring it up with my current rheumatologist next month and see if A) the findings could be explained by one of my other diseases, B) if not, see if he can refer me to an appropriate specialist if necessary, or if he can just monitor these levels from time to time.

ADUK, I hope the autoimmune markers don't develop into anything. There might be a correlation between MGUS and autoimmune disease from the little research I did, which makes sense, as MGUS / multiple myeloma has to do with B cells (key part of the immune system) over-producing plasma (I think?). A drug that I'm on attacks the B cell activating factor so that my body produces less B cells and reduces my overactive immune response. Wonder how that factors into all this...I'll be very curious to see what my rheum says.

Here's an article that might be of interest (not intended to frighten, just inform!). It's an abstract, so there's not a ton of info on what they found in the study, but I guess there's a relationship between MGUS / multiple myeloma and either autoimmune disease, treatments of autoimmune diseases (corticosteroids, chemotherapy, and other immunosuppressants), or a combination of the two.

http://www.ncbi.nlm.nih.gov/pubmed/24451437

Thanks again! I'll let you guys know what my rheum says!

[ADUK]

Re: Possiblility of MGUS at 26 yrs old

by ADUK on Thu May 22, 2014 10:16 am

Thanks for sharing. Yes - it seems there is a link between the two. I asked my haematologist about this and he agrees, he also said that in his experience people with autoimmune conditions such as arthritis are often low risk.

I found one article where almost 10% of psoriatic arthritis sufferers had an M protein:

http://211.144.68.84:9998/91keshi/Public/File/5/39-3/pdf/564.full.pdf

However the authors note that:

'The high prevalence of monoclonal gammopathy in our study population may reflect the presence of chronic immune dysregulation that characterizes both psoriasis and PsA. However, since multiple myeloma is infrequent in patients with PsA, the identification of this abnormality does not necessarily reflect a higher risk of developing multiple myeloma.'

and that 'Monoclonal immunoglobulins of heterogenous type occur in patients with PsA more commonly than in the general population. However, the occurrence of multiple myeloma was low.'

I actually mentioned this study to my haematologist (bet he loves research types like me!!) and he said that such results did not surprise him. He also noted that MGUS is pretty common in the general population over the age of 50 and whilst it's not common in those younger than 50 it is becoming less of a rare occurrence due to more sensitive testing in recent years.

WIth an M protein as small as yours it seems possible that it could just disappear over time, apparently they can be transient. Let us know how you get on and all the best!

[elizabeth104]

Re: Possibility of MGUS at young age (26)

by elizabeth104 on Thu May 22, 2014 2:58 pm

Lupinelady,

I agree with previous posters in seeking out a hem/onc, at the very least, to follow your IgG lambda monoclonal gammopathy and to test for amyloid. It sounds like you have a lot going on medically, and I'm sure you don't want another doctor to have to follow up with, but I would encourage you to take it seriously. In regards to autoimmune diseases, in my experience different doctors have different opinions on this... I've been told autoimmune diseases can be "associated" with a monoclonal gammopathy, and I've also been told that monoclonal gammopathys can be a "reactive" process as a result of an autoimmune disease...not necessarily a monoclonal gammopathy that could lead to a malignancy. Either way, monitoring is required.

When I was 25 an IgG lambda monoclonal gammopathy was the only abnormal finding from a rheumatology work up I had for mild joint pain and recurrent fevers. I was diagnosed with MGUS and then a few years later I had a bone marrow biopsy that reclassified me to smoldering myeloma. There are a few other "young" people on this forum. I don't really pay to much attention to risk progression statistics as most of them are based on an "older" population and may not apply to my situation. We are all unique, and myeloma is extremely heterogeneous between patients.

Good luck and let us know what happens!

Elizabeth

[lupinelady]

Re: Possibility of MGUS at young age (26)

by lupinelady on Wed Jun 11, 2014 11:15 am

Hi all,

My rheumatologist referred me to a hematologist. It was also discovered that I have osteonecrosis in both knees (both femoral condyles with possible tibial infarcts). It's most likely due to high dose prednisone (60mg daily for over a year). I know that bone issues are sometimes found in multiple myeloma/MGUS, but it's also the result of lupus itself, as well as the medications that I am/was on (like cytoxan for over a year, plus the steroids, etc.). Hopefully the hematologist will just want to follow me with blood work.

Thanks for your advice and support!
Chelsea

[ana1987]

Re: Possibility of MGUS at young age (26)

by ana1987 on Sun Jun 15, 2014 5:12 am

Hello Lupinelady,

Your are not alone in being diagnosed in a young age with MGUS.

I am 26 years old too and 7 months ago I was diagnosed stage 1a multiple myeloma, only a couple of a days ago I discovered that it means I'm smoldering multiple myeloma.

Like you, my first instict was to find people at my age diagnosed with MGUS or myeloma. People diagnosed at our age are very rare but not unusual so we aren't the only ones :p

I wish you all the best.