Elevated anti-RNP, but no symptoms present as suggested for MCTD

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Daylo
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Date Joined Sep 2010
Total Posts : 5
   Posted 9/17/2010 3:50 AM (GMT -6)   
I am new.  I am 59 and started feeling terrible about 4 years ago.  No energy and felt like I could not walk across my bedroom.  I came down with diabetes about 5 years ago, then I had nodules on my thyroid and it was removed about three years ago.  Then I really started feeling bad.  I went to a rheumatologist and she took blood and said i had MCTD because my anti-RNP was elevated.  However, I do not have swollen hands, Raynaud's, rheumatoid disease, or any of the other symptoms associated with MCTD.  It was discovered that my vitamin B12 was extremely low and then they found that my vitamin D was extremely low.  After several months of treatment with vitamin therapy, I  have started feeling quite a bit better, but still have the elevated anti-RNP after being tested again by another rheumatologist, but without any other signs or symptoms.  The first rhematologist waned to put me on Plaquenil, but after studying the side effects, I balked and would not take it.  The first rheumatologist and I then parted ways.  She was angry becuase I had not wanted to follow her explicit instructions.  The second rheumatologist told me that she saw no reason for me to start taking any medications until I had some visible symptoms. 
 
What type of MCTD do I have, if I don't have the criteria for the diagnosis, but do have an elevated anti-RNP?  This is all very confusing.  Thanks for your reply.

Bsime
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Date Joined Apr 2006
Total Posts : 1224
   Posted 9/17/2010 1:40 PM (GMT -6)   
MCTD is a very mysterious disease.  You can have symptoms of pm, lupus, or scleroderma...or not.  And to any degree.  Every case is different.  Overlapping connective tissue diseases like mctd can take a while to develop...not that you want that.  You already have described significant clinical symptoms of fatigue, weakness, and swelling in addition to finding the anti rnp antibody.
 
My case started with gout like symptoms but within days I had swelling, redness and pain in both feet, ankles and lower legs.  Fatigue and weakness.  It developed over the course of 5 months and most of my symptoms were more lupus like....kidney problems, joints, lot so swelling and increasing fatigue and weakness.  After 5 months polymyositis took over and I lost 40lbs of muscle in a week and became quadriplegic and could not swallow.  This hit me even though I was on 60mg of prednisone for several months.  My case was resistant and it took a 5 day treatment of ivig just to save my life.  I was within days of liver failure due to muscle breakdown overwhelming my liver and giving me auto induced hepatitis.
 
I have recovered well and lead a fairly active life today after many months in hospitals and almost 5 years or PT and working out on my own to bring myself back.
 
Don't be so quick to dismiss what your doctors are saying.  MCTD is an extremely complicated and unpredictable disease and if they want to treat you, do it.  If the side effects become problematic then ask for a different med.  Not everyone has serious side effects and ALL of the suppressing meds have side effects.  Fortunately most patients do not have serious ones but it is always possible.   You might be lucky and have a mild case that does not develop but nobody can predict that.  Plaquinel is often given for lupus or mctd with mild cases.  If your case develops then stronger controlling meds will be necessary.  You already have symptoms so treatment if probably a wise course of action.  Do not ignore the potential of this disease. 
 
Bill

Daylo
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Date Joined Sep 2010
Total Posts : 5
   Posted 9/17/2010 1:51 PM (GMT -6)   
Thank you for your reply.  I appreciate the time and effort put into the answer and it all makes perfect sense. 
 
Just last week, my 82-year-old mother was diagnosed with lupus of the skin after a biopsy.  She had taken Keflex in May and it triggered a terrible skin response.  It has taken this long to get a doctor to take a biopsy to get a diagnosis.  I have to wonder if she had an elevated anti-RNP for many years and did not know it as she was never tested.  I have to wonder if this disease lies dormant in some people and then is triggered by a medication or some outside environmental factor and that is when it begins to go haywire. 
 
I am going to find out the drugs that are known triggers for lupus and I am not going to take those drugs.  That much I can do on my own.  The rest is in God's hands.
 
Thank you!
 

Bsime
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Date Joined Apr 2006
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   Posted 9/17/2010 3:34 PM (GMT -6)   
To answer your question auto immune disease CAN be dormant for many years.  In my case it is thought it was lurking for at least 15 years.  The reason for this conclusion is that I had mild anemia and low platelets for all those year but absolutely no other symptoms and great health.
 
Some cases of lupus or other AI diseases can be triggered by drugs or a single event like cancer or an infection or trauma but most are idiopathic.  it is thought that we possess a set of genes that predisposes us to immune system disruption.  Something else triggers the onset of the disease but it can be a single trigger or many over time that nudge the immune system into a misdirection.  Most of us will never know although sometimes there is a clear idea of the trigger...but that is not the same as the cause.
 
There are several good books that might help you understand the mechanism of AI diseases which are quite different than "normal" ones.  The Autoimmune Epidemic is a good one and there are others. They won't give you answers for specific cases but will help you understand better.  Having an AI disease puts you in a state of never really knowing....maybe some day that will change but researcher don't really know that much about these diseases...yet.
 
Bill

Daylo
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Date Joined Sep 2010
Total Posts : 5
   Posted 9/17/2010 7:20 PM (GMT -6)   
Bill,
 
I suspected, and you have confirmed my thoughts on this disease.  It is a lying-in-wait type of disease that can be set off by probably many factors.triggers.  I have a photo of my mother's  grandmother who has her hands in her lap.  From their appearance, it is possible that she had rheumatoid arthritis -- an autoimmune disease.  This picture alone probably bolsters the argument for a gene factor in my own family. 
 
I was told by one rheumatologist that once you get one autoimmune disease, your body is apt to get more.  Diabetes is an autoimmune disease and so is thyroid disease - this was new, previously unknown information for me. 
 
I do not know exactly how vitamin B-12 and D are related in this situation, but they must be related in some way.   Your body stops wanting to absorb the vitamins needed as it also attacks your immune system.   I was told by the last rheumatologist that she had seen people have to be brought into her office in wheelchairs who had low vitamin D.  I certainly believed this statement as I had felt like I could not walk either, after many years of having enough energy to work all day and come home and accomplish all that needed to be done and still feel great physically. 
 
I also lived less than 5 miles from a very polluted power plant and their particulate for mercury in the air is high.  I would not discount that as a factor either, although there are many people who do get lupus who live no where near such an environmental problem. 
 
The book you mention, entitled Autoimmune Epidemic sounds like something that might help with better understanding.  Here is why I say that.  My sister-in-law who lives in another state has full-blown lupus, and who is not doing well at all.  I have yet another sister-in-law with underlying lupus and now my mother and I both have the underlying lupus.  I think it is rather odd to find that many middle-aged and elderly women in one family with two not being related by blood to any of the others, to have this terrible disease.  So, I too believe there to be an epidemic of sorts. 
 
It is too bad that we do not know all the triggers to set this disease off and avoid them, but it may be that there are different triggers for different people anyway, but that would be a blessing if someone would start investigating that portion of the whole picture and at least give us the information needed to avoid the triggers we do know about
 
Thank you for the book title.  I will definitely check that out.
 
Thank you so much.
 
 
 

Bsime
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Date Joined Apr 2006
Total Posts : 1224
   Posted 9/17/2010 10:18 PM (GMT -6)   
There has been an increase in most AI diseases over the past few decades and there are probably many reasons for it...the many new environmental insults are bodies are subjected to over time.
 
I would set aside the idea that there is some simple magic bullet...like vit d.  Some of us have deficiences and some have difficulty absorbing nutrients (part of many AI diseases) but some of us show normal levels of vit d.  I have problems with potassium but it is directly related to the disease.  I know I have problems with absorption but it is also related to the disease(s).
 
Stange stuff.  Don't think of it as "catching a disease."  It is not like getting a virus.  Once your immune system is misdirected it seems it can be more easily misdirected again... and again.  Also keep in mind that what is a trigger for one is not for someone else.  That is why so few understand these mysterious diseases.  There is no magic bullet that causes them.
 
On the flip side, some of us are lucky and the immune system eventually  normalizes.  There is never a guarantee it will not act up again but it is not always totally hopeless.  I was down to the 12th round, to the end of the count, and yet I was able to get up and "win."  Might not be so lucky if it happens again.
 
It has also been shown that AI diseases do run in families but not necessarily the same ones. 
 
Bill

lucysgd
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Date Joined Jun 2008
Total Posts : 663
   Posted 9/18/2010 9:59 AM (GMT -6)   
This is an interesting thread.  I looked at Lupus.org for info on medications that may induce Lupus.....which was also interesting.  Makes me wonder if medications may also cause MCTD?  Or just start the cascade.  Interesting and confusing. 
 
Bill - I'm curious as to whether the onset of your symptoms included fever - especially extended fever.  Thanks for the book title - will be checking into that.
 
Daylo - welcome!  I'm 56 and have been trying to figure this out for the last 3+ years....it would be nice if the answers came a little easier and a little faster.  The people on this forum kept me from going crazy initially.  Best of luck to you.
 
Lucy

Bsime
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Date Joined Apr 2006
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   Posted 9/18/2010 10:12 AM (GMT -6)   
Lucy,
 
No fevers.  Keep in mind that drug induced lupus is very rare.  Is this the info you got from LFA?
 
 
Mctd is a different disease that includes lupus symptoms as well as scleroderma and polymyositis. 
 
I personally don't believe that drug induced lupus or polymyositis is a significant factor.  Maybe more so with polymyositis from statin induced pm but even that is rare and should reverse itself after ceasing to take statins.  I hve friends who are convinced that statins induced full blown pm....they could be right but that is impossible to verify in any individual case.
 
Bill

lucysgd
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Date Joined Jun 2008
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   Posted 9/18/2010 11:36 AM (GMT -6)   
I couldn't access your link, Bill - but it looks like the same article.  Yes, they indicated it was rare, but did provide a list of meds - some of which surprised me - but I had never really looked into it before.  
I've had a long history of problems with statin drugs - severe leg pain being one of them.  As recently as last spring - my GP convinced me to try 10 mg of Lipitor (again) once a week - flare being the result.  I'm not saying it's what has caused my problems - it would appear that the symptoms should resolve after the offending drug is stopped, and that hasn't happened either.  The article did state that that could take months to years, however.
There just aren't any simple answers.  
I realize MCTD is a mix of Lupus, Scleroderma and PM - but do they all come on at once, or does one possibly trigger the others?  With overlapping symptoms it seems as though it would be hard to tell which came first?  And like you said, once misdirected, the immune system often goes awry elsewhere.
So many questions.....thanks for your input.
Lucy

Bsime
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Date Joined Apr 2006
Total Posts : 1224
   Posted 9/18/2010 1:08 PM (GMT -6)   
The link takes you to www.lupus.org which is probably where you got the info.

Statins can cause statin induced myositis but I have never heard it as a trigger for mctd. Symptoms do generally disappear in time but some people I know feel (can't prove it) that statins caused full blown myositis.

Mctd is the disease with a 1000 faces...or more. It is different in each patient in how it presents, which diseases develop, and in severity. No consistent pattern. Most patients that I know have relatively mild cases not extreme like mine.

Links on mctd and uctd:

http://emedicine.medscape.com/article/335815-overview

http://www.patient.co.uk/showdoc/40001176/

http://www.medicinenet.com/mixed_connective_tissue_disease/article.htm

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

Just remember that getting a handle on mctd or lupus or any AI disease is like trying to hold a cloud or a wave in your arms....

Bill

PS - if you have problems with these links just copy and past them directly into your browser's address bar.
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

Daylo
New Member


Date Joined Sep 2010
Total Posts : 5
   Posted 8/19/2011 9:44 AM (GMT -6)   
:-)  Hello everyone.  It has been a long time since I posted.  I posted about MCTD, for which I was diagnosed several years ago. 
 
I have been doing some investigating on my own and I am currently in the process of being checked for an allergy to metal.  I had a fall back in 2001 in my home and broke my tibia/fibula and dislocated my ankle.  The surgeon put in a titanium plate and screws (possibly other metals as well if this was an alloy - and I suspect that it was).  I have been researching the problems one can have with a metal allergy and they appear to be close to what I have been experiencing with MCTD.  When I was younger, I wore jewelry, but invariably had to quit because I had trouble with itching and weeping skin on my ears when I wore this jewelry. I also was never able to wear a watch because of these problems.  
 
I have recently learned that titanium is often a mixture of other metals, including nickel.  Nickel appears to be one of the worst metals to produce allergies; however, the National Institute of Health also has several articles on the problem of titanium allergies, which I had questioned in the past, but all of my doctors had stated there were no allergies to titanium.  Not true!  Also, another consideration is metal implants for dentures and/or dental prostheses. 
 
To make a long story short, if you are experiencing any problems and you have metal in your body, you may want to get tested.  There is a superior test for metal that I am planning on taking within the next few weeks called the MELISA test.  It will determine if you have allergies to metals.  If my test comes back positive, I will be having my plate and screws removed from my leg.  Time will tell.  I will keep everyone informed.  You can learn more too by going to the MELISA foundation and read about their multiple areas of expertise.  Also, they have some articles on their site regarding this allergy problem.  I wanted to put this out there simply because I am concerned about not only myself, but others who have metal in their bodies.  I believe the health problems are multiple!  There are so many people being diagnosed with Lupus and MCTD these days and I believe it used to be rare.  There must be an explanation for this.  Keep searching!

Bsime
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Date Joined Apr 2006
Total Posts : 1224
   Posted 8/23/2011 10:18 AM (GMT -6)   
Titanium is complete inert in the human body.  It can be alloyed with other metals for certain appllications.  Here is some info on medical grade titanium.  I don't believe that ni is alloyed in mgt.
 
 
If you want a better perspective on possible environmental triggers you should read the book I suggested last year.  There are 000s of different chemicals that we ingest or are exposed to that were not present a few generations ago.  These might account for the rise is AI diseases.
 
Bill

Daylo
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Date Joined Sep 2010
Total Posts : 5
   Posted 8/23/2011 11:12 AM (GMT -6)   
Bill,

I appreciate your information concerning the book. I have been researching several different papers from different locations around the world, including the papers now on the website for the National Instittute of health and the MELISA Organization, which tests for metal allergies.

There have been several reports stating that patients who had metal implants inserted came down with autoimmune disorders and once removed showed very good results. These papers state that titanium does contain other metals, such as nickel, vanadium, aluminum, and molybdenum. There are several papers written by physicians and researchers who state that these metals CAN release ions into the blood stream.

From the site you posted: http://www.supralloys.com/medical-titanium.php

Medical Grade Titanium
Titanium 6AL4V and 6AL4V ELI, alloys made of 6% Aluminum and 4% Vanadium, are the most common types of titanium used in medicine. Because of its harmonizing factor with the human body, these titanium alloys are popularly used in medical procedures, as well as in body piercings. Also known as Gr. 5 and Gr. 23, these are some of the most familiar and readily available types of titanium in the US, with a number of distributors specializing in these specific grades.


BUT this is only one site that talks about their particular medical titanium alloys. There are many other manufacturers. It would certainly depend upon the manufacturer selected by the hosptial as to which titanium medical implant would contain nickel, not just the one site. On the MELISA organization site, they speak of nickel being a pollution in the titanium as well.

I am only basing my post on MY surgical experience. I only started having automimmune disease after my implant. I suggest that all people who have implants should consider this. What would it hurt? What if it helps?

I will keep you posted on the results.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   Posted 8/24/2011 1:42 PM (GMT -6)   
Daylo and Bill - thanks for the interesting info.  I am currently reading THE AUTOIMMUNE EPIDEMIC, as suggested by Bill and am finding it quite eye-opening - especially with regard to the environmental factors, and how many of them are "under the radar"  in our own comprehension.  The numbers of people affected by AI disorders is far greater than is generally understood - far greater than cancer.   And the complexities involved put everyone; patients, doctors and researchers at a distinct disadvantage.  I'd reccomend that anyone who is, or has loved ones who are, suffering from autoimmune disorder(s) read this book.  The author is a journalist who has had serious autoimmune dysfunction, and presents the information in a very readable format.  I got my copy at the public library.
 

fiddleplayer
New Member


Date Joined Sep 2011
Total Posts : 2
   Posted 9/16/2011 11:07 AM (GMT -6)   
Hi I am new to this forum. I was diagnosed with MCTD in November of 2009 at age 50. I'm wondering if any of you have had problems with frequent upper respiratory infections, especially sore throat leading into sinus infection. I have had about 9 such infections in the last year. It seems as if i get sick about every 5-6 weeks almost like clock work. I am interested in any discussion about this including advice on what to do about it. Also, I wonder if there are any rheumatologists that specialize in MCTD/does anyone know?

Bsime
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Date Joined Apr 2006
Total Posts : 1224
   Posted 9/16/2011 2:54 PM (GMT -6)   
MCTD is very rare and I don't know of any doctor who specializes in overlapping, connective tissue diseases but there are many who are expereinced treating them.  Your best bet is to find a rheumy who is experienced in treating lupus and other AI diseases.  He will have the knowledge and experience to treat mctd or related diseases.  Also, if you live near a large teaching hospital or clinic with a rheumatology department you will be more likely to find experienced docs.  Examples of those are Mayos, Johns Hopkins, Northwestern, Cleveland Clinic and there are others.
 
As for your respiratory problems they can be caused by mctd or by any suppression meds you are taking which have suppressed your immune system and made you more susceptible to disease.  MCTD by definition is lupus, scleroderma and polymyositis although other AI diseases can also be present.  All 3 of those can cause various lung and respiratory problems.
 
Do you have allergies?  And if so, are they being treated?  Couple untreated allergies with a suppressed immune system and that can mean more infections.  You should discuss this with your GP/internist and rheumy about your overall health problems.  Force them to look at your overall health and not just your disease.  You can't have something as powerful and systemic as mctd and not have it affect almost everything in your body in some way.
 
Bill

fiddleplayer
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Date Joined Sep 2011
Total Posts : 2
   Posted 9/16/2011 7:36 PM (GMT -6)   
Bill,
thanks for your reply. I do have asthma which i think is possibly triggered by allergies but i have never had any allergy testing done. it had not occurred to me to connect the two. i guess i was blaming the plaquenil as suppressing my immune system, leaving me vulnerable to viral infections. It seems as if every visit with my grandchildren results in another sore throat/sinus infection.
thanks again!
Mary

jeanneac
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Date Joined Feb 2009
Total Posts : 1648
   Posted 9/18/2011 9:09 PM (GMT -6)   
Interesting discussion. I have no idea what has caused my immune system to go wacko these past several years and still don't know. It drives me nuts trying to figure out patterns. While I had a pretty rough couple of years with colitis. During this time, I started with extreme fatigue and joint pain. Still don't have it figured out. I'll keep reading and hoping we can all get some answers and better treatments. I feel better with the joint pains and fatigue but then sometimes it will jump back on me like it did this weekend. I was tapering down on the plaquenil. Ugh! It's never ending. I hope we can all find some relief.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1224
   Posted 9/18/2011 9:42 PM (GMT -6)   
Just think of our immune systems as a machine gun gone wild...shooting at anything and everything.
 
Bill
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