Author Topic: Monoclonal Gammopathy  (Read 1626 times)

anita

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Monoclonal Gammopathy
« on: November 16, 2011, 02:51:15 PM »
HI all,

Yet another diagnosis for me....MGUS (monoclonal gammopathy of undetermined significance). 

It is a blood marker for certain cancers (multiple myeloma and lymphoma are two), but doesn't mean you have it right then...which I don't.  But apparently I have to be followed since this has stayed positive for over 2 years now.

I don't know much about it and would like to hear from any who does, or has it.  My doctor says it can occur in those with Sjogren's so I thought some others here might have also tested positive.  Irish, what can you tell me about this?
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

ohiolady

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Re: Monoclonal Gammopathy
« Reply #1 on: November 16, 2011, 03:28:56 PM »
Oh good grief, Anita, you did not need one more thing.  I hope others will come along and offer insight.  You manage to stay positive in spite of it all and I admire that.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 58

Pisces24

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Re: Monoclonal Gammopathy
« Reply #2 on: November 16, 2011, 06:09:38 PM »
I am not sure what all "markers" I have to be honest. I just know I get a slew of blood tests every year from my 3 -ologists to monitor everything.  So far, thankfully, I have been normally abnorma - if that makes any sense.

Sooki

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Re: Monoclonal Gammopathy
« Reply #3 on: November 17, 2011, 12:41:21 AM »
I have that as well.   My doc said that below 3 g/dL, there's not much to do (I'm steady at 0.5).  At these low levels, it's apparently symptomless.

My rheumy tried to reassure me that the rate of complications is only 1-2% of people with MGUS per year. 

I took the Standard Health Questionnaire in Washington state when I was trying to change insurance carriers.  (The test gives a score; above 325 points, insurance companies are allowed to reject you for coverage.) The points are given based on actuarial tables of costs of various conditions.  MGUS gets 80 points.  So, the risk isn't major, but isn't negligible either.

Sjs was like a pinball machine on that questionnaire in that each symptom racked up points in addition to points for Sjs.  Adding the MGUS to it meant that I can't change insurance carriers as long as live in this state (what a screwy system).

Anyway, I'll look forward to more comments on this condition.

65 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy,
Plaquenil, CellCept, Synthroid,
D3, Ca/Mg, fish oil, ALA, DHEA, biotin, B-12, always GF, DF, S(oy)F, currently Paleo Autoimmune diet

Sooki

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Re: Monoclonal Gammopathy
« Reply #4 on: November 18, 2011, 02:07:20 PM »
I've been doing some more reading on MGUS.  There is apparently an increased rate of MGUS developing into multiple myeloma with taking immune suppressants. 

The studies I read involved kidney transplant patients who then took immune suppressants to prevent rejection.  I know that CellCept (which I take) is a commonly used anti-rejection drug.

Hmmm.  Another question for my rheumy, I think.
65 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy,
Plaquenil, CellCept, Synthroid,
D3, Ca/Mg, fish oil, ALA, DHEA, biotin, B-12, always GF, DF, S(oy)F, currently Paleo Autoimmune diet

lisabeth

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Re: Monoclonal Gammopathy
« Reply #5 on: November 18, 2011, 02:12:12 PM »
Hi there,

I had monoclonal gammopathy for two years and then it disappeared and it has never returned.  I was sent to a hematologist and I had a bone marrow biopsy which was negative.  In my case, I think a chronic infection I have triggered the monoclonal gammopathy as it disappeared with antibiotic treatment.......

Hopefully you will have it monitored and it might turn out to be nothing.

Thanks.

Madison Granny

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Re: Monoclonal Gammopathy
« Reply #6 on: November 18, 2011, 03:24:16 PM »
I have MGUS.  It was discover long before my SJS.  I was sent to  a hematologist and had to endure a bone marrow biopsy which of course was negative.  After I was diagnosed with SJS andstarted on Plaquenil it disappeared.  I have chosen not to see he hematologist again.  My Rheumy will tell me if it comes back.  I have way to many doctors as it.  They all run that test so why duplicate it.
Primary SJS, dRTA, Osteroporis, OAB, stage 3 kidney disease, hypothyroid and high blood pressure.  Medicine I take are plaquenil, bicarb, prolia, synthroid, toprol and amolipine, citracal and vitamin D.  I use Arex and Azasite and Prolia.  I also have Reynaud's and osteoarthris of the toes

anita

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Re: Monoclonal Gammopathy
« Reply #7 on: November 18, 2011, 06:21:18 PM »
I was sent today for some additional labs and a skeletal survey, which is x-rays of every bone to look for lytic lesions (signs of multiple myeloma).  I don't know results yet of course, but feel sure it will be fine and hope that they will just want to recheck every so often.  They haven't talked about a bone marrow...and I hope they don't.

I did find online (pub-med, which is pretty reputable) that MGUS is associated as a serious complication of Sjogren's.  The gift that keeps on giving!!!
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

artsyamerican

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Re: Monoclonal Gammopathy
« Reply #8 on: November 22, 2011, 07:37:50 PM »
I was recently dx with Sjogrens....and was dx with MGUS in 2008 - IGG Kappa.  My mspike has done crazy things...at one point I was  bi-clonal! I am an expert with all things MGUS!! LOL...as a matter of fact I am part of a study at the NIH in Bethesda, MD.  If I can share any info with you let me know.

Hugs,
Amy
Hugs,
Amy
Sicca, Seronnegative Inflammatory Spondylarthropathy, MGUS, PN, Tarlov Cysts, Spinal Stenosis, 3 Herniated Lumbar Discs, Type 2 Diabetes

Celebrex, back off Methotrexate, Plaquenil, neurontin, prozac, simvastatin, Metformin, Lisinopril, Vit

anita

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Re: Monoclonal Gammopathy
« Reply #9 on: November 22, 2011, 08:19:27 PM »
I really don't know much about the findings.  The first indication was a positive serum IFE and IMP...IgG lambda (in 2009).  Then recently there was a positive IFE urine.  The doctor seemed more concerned when it showed up in the urine.  Is this a bad sign??

I just had a couple more labs done and a skeletal survey.  Don't have results yet, but would like to assume they are fine and this will just be something I'll have to have checked.  How often do you have follow up for this and what does it include?

Thanks for your input.

Anita
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

artsyamerican

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Re: Monoclonal Gammopathy
« Reply #10 on: November 22, 2011, 09:55:34 PM »
What quantity showed up in your urine? M protein in urine is called Bence Jones proteins. You can google that for more info.  Oncs worry about Bence Jones because of the propensity to cause kidney probs.  Have you had a BMB yet? That really is one of the more telling tests. I had a "normal" skeletal survey - but MRI afterwards showed 2 herniated discs, spinal stenosis, and Tarlov Cysts.  I do not put much stock in plain ole xrays.    I will be having my 3rd BMB in Jan....ugh.... but I know I will get some piece of mind if everything is okay with the BMB.

What kind of symptoms do you have with Sjogrens if you don't mind me asking. ; )

Hugs,
Amy
Sicca, Seronnegative Inflammatory Spondylarthropathy, MGUS, PN, Tarlov Cysts, Spinal Stenosis, 3 Herniated Lumbar Discs, Type 2 Diabetes

Celebrex, back off Methotrexate, Plaquenil, neurontin, prozac, simvastatin, Metformin, Lisinopril, Vit

anita

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Re: Monoclonal Gammopathy
« Reply #11 on: November 22, 2011, 10:08:57 PM »
Do to the upcoming holiday I don't have a copy of the actual lab in hand yet.  Doctor called me on the phone late Friday about it being in urine now...but he is off this week...ugh.

I don't even have the x-ray results yet until he gets back.  No one has mentioned the BMB yet, and I'm definitely not looking forward hearing it either.  But understand that is the only way to really know.

My Sjogren's symtpoms are typical (fatigue, joint pain, etc.)  my dry mouth isn't as bad as it used to be.  But my neuro problems are severe.  I have peripheral neuropathy (pain & sensory issues) and severe autonomic neuropathy (multiple heart problems, gastorparesis, balance, temp control...the list goes on) as well as APS that has caused 3  mild strokes, hundreds of TIA's, 2 amuarosis fugax, and now almost 100 superficial venous thrombi (in the last 9 months).  They have found ganglionitis on the spine with help from a brand new MRI done at Johns Hopkins (where my doctors are).  The MGUS is just the icing on the cake right now. 

Sounds like you have a full plate as well.  Join the club...LOL  Lots of good info here.

I'll post the results of my labs when I get copies.
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

irish

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Re: Monoclonal Gammopathy
« Reply #12 on: November 23, 2011, 12:39:52 AM »
I had never heard about the MGUS and after reading all these posts on this thread I am wondering if it is good not to know anything about it. lol

If my doc did the test he didn't tell me anything about it. Also, I am wondering if it is one of those tests that can drive you crazy. Seems like some of these tests they discover that show a propensity for the problem can drive a person crazy because there is no "for sure" definitiona and clinical findings that are always the same.

With the autoimmune diseases we are all high risk for a bunch of stuff and the best thing we can do is to be on the lookout and watch for symptoms. I hope that this test has more specific information that is more helpful. I guess I will have to start "Binging". Irish ;D
« Last Edit: November 23, 2011, 09:50:25 PM by irish »