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U3RNP


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#1 aodom

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Posted 24 January 2016 - 12:47 PM

My ANA was 1:640, nucleolar pattern and I was referred to rheumatology.  

 

Repeat ANA at Oklahoma Medical Research Foundation was 1:320, nucleolar pattern with all tested autoantibodies negative, however....

 

"bands consistent with U3 RNP" were found and this was "supported by immunoflorescence" but my doctor had not ordered that test so I did not receive a positive or negative result.  It was recommended that this specific test be done (which it has) but will take a couple of months to get results.  

 

Cannot find any information (of course) on how likely this is to correlate with a positive result or how likely it is a false positive.  

 

I searched the forum for U3 RNP but did not find information that would help with this.  It may be that nobody will know the answer and that is fine - just thought I would ask.  

 

Thanks in advance!!



#2 Joelf

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Posted 25 January 2016 - 05:27 AM

Hi Aodom,

 

Welcome to these forums!

 

Blood tests can throw up false positive results and the whole topic of Autoantibodies can be very misleading, as it is perfectly possible to have positive antibodies and yet never go on to develop full blown scleroderma and vice versa, as many of our members can testify. Although they are a useful tool to help with obtaining the full picture, the blood test results are never the be all and end all and a diagnosis any autoimmune disease should really be made on the clinical symptoms as well as any specialised tests needed.

 

I've found a link to another thread False/Postive ELISA test and we have a brochure What in the World is Scleroderma? which lists the symptoms of scleroderma and which I hope you'll find helpful. 

 

Kind regards,


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#3 Shelley Ensz

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Posted 29 January 2016 - 11:38 AM

Hello Aodom,

 

Welcome to Sclero Forums. Here is a recent research article that includes U3 RNP that you may find helpful, Autoantibodies in Systemic Sclerosis: Unanswered Questions.

 

Basically, as Jo mentioned, the autoantibodies mean very little all by themselves. What really matters, a lot, is the reason(s) why your doctor ran the test in the first place. Meaning, your symptom(s) are generally far more important than the antibodies. So while you are waiting for more information on your test results, it may be a good time to look into the symptoms of systemic sclerosis, and see whether any of them apply to you right now.

 

For starters, you may want to view our Diagnosis of Scleroderma resources, as well as What is Scleroderma? which explains the various types that can occur.

 

:hug-group:


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#4 aodom

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Posted 30 January 2016 - 07:13 PM

I really don't have any idea what to think.  I was tested because I was having hand pain and swelling and cold hands (but not Raynaud's).  This went on for over a year with using various arthritis/Raynaud's gloves, heating pads/blankets.  I did not go the doctor until I starting having decreased use of my hands (could not hold a knife to cut vegetables/meats, hard time holding a pencil, jar lids a nightmare).  Having any degree of limited use of my hands is not acceptable with my job. A trial of steroids completely resolved my symptoms (temporarily).  

 

Looking back, I have a pretty extensive list of issues that i never considered related but now I wonder. Symptoms started 10 years ago at age 35:

-Some unknown vascular issue that caused severe post partum bleeding (requiring blood transfusions), 2 D&Cs (with severe bleeding after each) and ending with necrosis of my uterus after the birth of my 3rd child (had hysterectomy when he was 5 weeks old).  Pathology done twice but cause was unknown.

-Esophageal spasms:  1st scope showed severe GERD and narrowed esophagus, 2nd scope 2 years later (for same symptoms)  showed visible Barrett's but negative biopsy.  Gallbladder ultrasound and hepatobiliary iminodiacetic acid (HIDA) scan 2 years later (for same symptoms) showed no stones and decreased function of gallbladder but did not need surgery.

-5 years after hysterectomy (at age 40) developed pelvic collapse of everything down there (bladder, vagina, rectum).  TERRIBLE surgery with severe bleeding needing multiple units of blood.

-2 years later, had repeat surgery to fix the failed attempts to fix the rectal issue but had also developed rectal prolapse and had 6 inches of bowel removed.

-I have sleep apnea and sleep with CPAP but have issues with swallowing air that is most likely caused by relaxation of esophageal sphincter (so my sleep physician states).

-Continued bowel issues that drives me absolutely crazy!  Afraid to tell my surgeon that I still have prolapse and the other issues I was having trouble with are even worse now than before the surgery.  I see at least one more surgery in my "near" future but I had complications after each surgery and need to forget the painful recovery (and waking up with a medical team and a crash cart sitting next to me when my brain decided it did not need to breathe anymore).

-Tried to take up running a couple of years ago (thinking if I was in better shape, I would feel better) and despite running 3-4 times a week for 6 months, I could never run (jog) more than 1/2 mile at a time due to shortness of breath and tightness in the chest (was very hard on myself and thought I was just a lazy, horrible out of shape woman (but was never overweight) and gave up the idea of running).  

 

I have no skin issues.  Just cold hands with occasional swelling.

 

So my symptoms are a bit weird.  They very well may not be related to anything but it sure seems like a lot of problems for someone less than 46 (just had a birthday).  I was not expecting ANY abnormal lab results so was very surprised when I saw the results.  My rheumatologist put me on plaquenil 4 months ago and my hands are remarkably better!!  No swelling, no pain, have not been wearing gloves or using heating pads, and I can cut my own meat now.  I still have issues holding a pencil/pen and writing much - thank goodness for computers!!  Filling out clinic forms can be very difficult!

 

So I continue with plaquenil and wait and see.  Maybe all this goes together or maybe I just have a bummed-out body at age 46.  Either way, it is a bit depressing.

 

Thank you for the advice!!



#5 greypilgrim256

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Posted 02 February 2016 - 02:50 AM

Hi Aodom, I also have the U3RNP antibody.  It is a very rare antibody with scleroderma.  My symptoms were similar to yours except I had a lot of joint pain.  I have been on Methotrexate for over a year and feeling much better.  There are only 3 antibodies that have a Nucleolar pattern.  U3RNP, Th/To, and PM/Scl.  



#6 aodom

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Posted 02 February 2016 - 03:19 PM

Well, that was not really what I wanted to hear!  Was hoping someone would say that my history sounds NOTHING like scleroderma.  

 

I did check and I tested negative for the other 2 antibodies.

 

It is strange that I keep thinking of things that might be related that I just blew off before.  

 

I suffered stress fractures of both ankles and both knees 5 years ago (age 40), took forever to heal.  I had a bone scan and had osteopenia.  I focused on taking calcium and my last bone scan was fine.  I started having bilateral knee pain about 10 years ago (at age 35).  I just always thought I had arthritis, although there was absolutely no reason whatsoever for me to have had that at such an early age (no sports, no injuries, no family history).  Again, just thought I was being a baby and put myself down.  The last 2 years i have started having back pain, especially when standing for long periods of time.  I don't like to complain or give in to discomfort so I never was seen by a doctor for any of these issues (except the stress fractures). Just have lived on ibuprofen and aleve. 

 

I really, really, really do NOT want this!!  



#7 greypilgrim256

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Posted 03 February 2016 - 02:35 AM

The stress fractures and back pain really doesn't sound like it would be scleroderma related.  Joint pains in your knees, ankles, hands, etc are the initial pains associated with scleroderma/connective tissue diseases and arthralgia.  

 

Do you have Raynauds in your fingers or toes?  Hand swelling is a very early symptom.



#8 Joelf

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Posted 03 February 2016 - 03:00 AM

Hi Aodom,

 

(quote) "Well, that was not really what I wanted to hear!  Was hoping someone would say that my history sounds NOTHING like scleroderma."

 

Unfortunately, the symptoms of scleroderma are so varied and affect everyone very differently, so it's quite difficult to decide whether the symptoms that you're experiencing do actually relate to the disease or not. 

 

As Greypilgrim has correctly stated, stress fractures and back pain are not necessarily indicative of scleroderma and it is easy to try and relate everything to the disease, even if the cause can be something different. This is why we do recommend that you consult a listed scleroderma expert, as it is such a complex disease to diagnose.

 

(quote) "I really, really, really do NOT want this!!"

 

Forgive me for stating the obvious, but I don't suppose anybody does, given the choice!! :wink:

 

 


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#9 aodom

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Posted 03 February 2016 - 03:35 AM

Thank you for the comments!

 

Joelf...you are absolutely right!  I am so sorry for my comment.  Nobody wants this.  I should not have written that and I apologize!



#10 Joelf

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Posted 03 February 2016 - 06:15 AM

Hi Aodom,

 

No worries; I do understand how anxious and frustrated you feel.

 

:hug-group:


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#11 greypilgrim256

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Posted 04 February 2016 - 02:40 AM

Aodom, you should really do your best to try to get to a Scleroderma specialist.  Regular rheumys just don't cut it with this disease.  It does sound like your case is fairly mild right now considering you don't have a lot of skin involvement.  

 

How much swelling are you tallking about?  Your fingers or your whole hands?  Keep in mind scleroderma doctors consider swelling to the be same as skin thickening as swelling may precede skin fibrosis by years.   



#12 judyt

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Posted 11 February 2016 - 03:36 PM

Hi,

After all these years of feeling ghastly most of the time, I had an annual appointment with a Rheumy.   Just a Registrar, not a specialist or an expert, looked about 13 maybe 17!!

 

Asked me how I was feeling - I told him, and asked about joint pain of which I have zilch then proceded to tell me that my sort of leg pain and fatigue sounded VERY unusual to him, and suggested that what I need is a Green Prescription :wink: to encourage me to exercise more :dont-know: .

 

Obviously all in my head and so if I exercise to my limit and don't faint or have a nasty fall I will probably begin to feel better soon.   I wish.

 

I thought I got past all that stuff years ago, but it would seem not.

 

Judyt



#13 Choclit

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Posted 26 February 2016 - 03:19 AM

A comment on ANA patterns.  I work closely with Dr. Allan Metzger, Medical Director of RDL Reference Lab in LA, on papers that I write related to ANA and antibody testing, changes in ANA levels over time, etc.  ANA pattern reading is an art form and is not even consistent between testing labs.  The only reliable way to know whether or not you have a specific antibody is to test for it.  The most "reliable" pattern from a correlation standpoint is the centromere pattern, but even there different lab techs often see patterns differently.

 

One other related comment from Dr. Metzger.  When Scl-70 testing is done by ELISA and also Multiplex, the default testing methods these days, there is a significant chance that if it is a low positive result, it is a false positive.  RDL automatically re-runs ALL positive Scl-70 results initially done by ELISA by a more accurate (and expensive) method called double immunodiffusion and they see about a 30% false positive error rate when they do this.  RDL is one of only two labs in the US (that I am aware of) that offers comprehensive scleroderma antibody screening panels.  ARUP in Utah is the other.  I have talked with one of their medical directors about this issue and they (unfortunately) don't do the confirming re-test like RDL does.  Instead, they note in their reports that if the Scl-70 antibody tests positive along with a second antibody, ignore the positive Scl-70 result since it may be a false positive.


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