Positive Anti-RNP (mctd)

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canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 11/2/2007 9:24 AM (GMT -7)   
Good day everyone hope you are all well,
 
I have a question for those you who are very knowledgable with blood work. I have a positive ANA of 1:2560 and a positive anti-RNP I am wondering does having that positive antibody always mean MCTD. My doctor is a little baffled by me as having such a high ANA and a positive antibody and yet I am going on a year and the only symptom I have had up to this point is joint pain. If it does always mean MCTD is that a slow progressing disease? Not that I want any but I just feel like I should have more symptoms already at this point if it is indeed MCTD. Currently I am diagnosed as UCTD but I thought the anti-RNP was always MCTD.
 
thanks
UCTD Plaquenil 400 mg and  Diclofenac 150 mg on really bad days Tylenol Arthritis.  and omega 3 with Moducare supplements


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/3/2007 7:49 AM (GMT -7)   
canuckgirl, I don't know much about the anti-RNP, but I think I remember hearing that it does indicate MCTD, so you might not have the right diagnosis. It's good that you don't have many symptoms and hopefully things will stay that way for you.

I'm bumping this up for you so that hopefully one of our members with MCTD will see it and be able to better answer your question.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/3/2007 8:10 AM (GMT -7)   
I have mctd and had all the classic symptoms.  There has been and still is controversy if mctd is a transitional state or a specific disease.  Here is a site that has some specifics about this rare and puzzling disease.
 
 
Let me know if you have more quesitons.  I had 4 major criteria and 3 minor ones.  It took my doctors several months to clinically diagnose mctd but they thought I had it before confirmation.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 11/3/2007 3:18 PM (GMT -7)   
Thanks to both of you for responding, Bill can you tell me did you ever have Raynaud's (sp) I don't have it and everything I have read said that is one of the first indicators. I am also wondering if you can tell me if you have had any gladular problems? I am suffering from strange sort of sensations in my paratoid gland in front of my earlobe. But seem to have all the symptoms of Lupus and none of MCTD but yet this anti-rnp they are telling me is only seen in MCTD.
 
I am confused. sad
UCTD Plaquenil 400 mg and  Diclofenac 150 mg on really bad days Tylenol Arthritis.  and omega 3 with Moducare supplements


NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 533
   Posted 11/3/2007 3:47 PM (GMT -7)   

Hi,

I been diagnosed with MCTD also.  I have a positive anti-rnp,Raynaud's, joint pain, fatigue, shortness of breath on exertion.....My rheumatologist has told me that my case is manifesting more like Lupus which I believe can happen.  From what I have read MCTD can do that and pick up the characteristics of one disease over another.  I am currently taking the meds that you would take if you had Lupus.  I know it is frustrating and scary trying to get diagnosed and then coping with the diagnosis.  You have come to the right place for support.  This is an awesome sight.

I hope this has helped you some. 

Mary Ann


 
** MCTD,Fibromyalgia,Raynaud's June 2005
**Sleep Apnea - February 2006
**Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Lyrica, Folic Acid, Metoprolol, Lotrel, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/3/2007 8:28 PM (GMT -7)   
canuckgirl said...
Thanks to both of you for responding, Bill can you tell me did you ever have Raynaud's (sp) I don't have it and everything I have read said that is one of the first indicators. I am also wondering if you can tell me if you have had any gladular problems? I am suffering from strange sort of sensations in my paratoid gland in front of my earlobe. But seem to have all the symptoms of Lupus and none of MCTD but yet this anti-rnp they are telling me is only seen in MCTD.
 
I am confused. sad

MCTD is a combination of lupus, scleroderma and polymyositis.  You can have symptoms of any one of them, 2 of them, or all 3.  I was first diagnosed with lupus which was correct but I had more and 2 months later I was diagnosed with mctd.
 
My initial symptoms were swelling in both feet/ankles which spread to my legs and later my hands and arms.  Also joint pain.  I had proteinuria (kidneys filtering out proteins) which cause very severe edema.  All my joints were inflammed and painful and eventually I exhibited muscle weakness.  about 5 months after the intial flare I had raynauds and still have it although it has improved.  My entire digestive tract was affected and I had auto immune induced hepatitis.  In short I was a mess.
 
Most cases are not as extreme.  MCTD will usually present symptoms of one of the three diseases and then morph in some way.  Lupus has been called the disease with a 1000 faces and mctd must be the disease with 10000.  It is highly variable and difficult to diagnose and treat in some cases. 
 
Raynauds is a secondary condition but can be present with lupus, scleroderma or mctd.  Very common. 
 
Anti rnp antibodies are required for an mctd diagnosis.  U1-70kd antibodies are usually present.  Here is a link that might help to answer some questions you have. 
 
 
 If you are looking for black and white answers you will not find them.  MCTD is a rare, little understood disease that is highly variable.  The good news is that most cases, once diagnosed, can be successfully treated.  Even though mine was very extreme I have recovered well and have not have a flare.  My problem is that PM took 40lbs of muscle mass from me in a week and left me a quadriplegic who could not swallow.  That is all past and I have resumed a somewhat normal life...playing golf, working out, hiking and skiing again next month.  I am not anywhere near my previous fitness level but life is good....just different.  My story has been told many times on this forum and on www.myositis.org .  I would bet that you will not have the same experience that I did.
 
All of the above said...there is no definite pattern to mctd.  Treatment is pretty much the same but some cases are resistent to prednisone.  Mine was and probably due to scleroderma or lupus attacking my GI tract....meds were not being absorbed properly.  I had to have gamma globulin (ivig) to save my life.
 
You will need to learn to be patient with this disease and you will not always get definitive answers.  Ask more questions if you have them and feel free to email me if necessary.
 
This is a scary situation but you need to focus on diagnosis and treatment now.  If you are unsure of the doctor's diagnosis, find an experienced rheumatologist and get a second opinion. You might consider going to a clinic like Mayos or the new myositis clinic at John Hopkins.  If you are Canadian, I don't know where to send you but there are other Canadians on the other site.
 
Bill
 

Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 11/3/2007 8:52 PM (GMT -7)   
Thanks Bill for taking the time to type that out I really appreciate it. I have come to terms with the fact I  have some type of connective tissue disease it's the not knowing what will happen next or hurt next or fall apart next I don't like. It's hard to plan a life when you don't know how sick you may actually get as time goes on.
 
Thanks again Bill,
 
P.S. yes I am Canadian although I would love to be able to go to one of those clinic's you mentioned.
 
Angela


UCTD Plaquenil 400 mg and  Diclofenac 150 mg on really bad days Tylenol Arthritis.  and omega 3 with Moducare supplements


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/4/2007 9:07 AM (GMT -7)   
 
Hello Angela
 
The uncertainty is something we all have to live with. In fact, well people live with uncertainty too except they have no reason to doubt that they will not be so unlucky as to have their lives changed in a moment of misfortune, such as a car crash. They simply assume their lives will go according to plan and turn out perfectly as they hoped. But there are all sorts of factors apart from chronic disease and accidents, that mean lives rarely follow the plan.
 
Bill has given an excellent reply, to which I would only add the fact that anti RNP is not only found in MCTD, it is high titres that count as a criterion for a diagnosis of MCTD. A diagnosis simply means fitting into a set of criteria often found together that doctors have decided to call MCTD ( or SLE or whatever) for convenience sake. Many people do not fit neatly into any criteria 'box'. Other diagnoses other than MCTD are also relatively recent : APS and subacute cutaneous also come to mind.
 
 Cherish and foster the hope that you will adapt to whatever limitations disease brings and search for fulfillment despite the difficulties. Try not to focus on what you can't do but on what you can reasonably hope to achieve. You might have to make huge adjustments and many sacrifices but the glory of the human spirit is adaptability and rising above misfortunes. There are so many examples of even very  ill people rising above the limitations of their disease of living well with it.
I hope you will find excellent treatment and good health care. Remember that the disease never progresses in many people, and that those who live more or less normal lives with their disease well controlled rarely post on forums
 
Live in hope and keep the faith
 
Wishing you well
 
BB
 
 
 

canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 11/4/2007 4:19 PM (GMT -7)   

BB Thank you so much for what you said. It really helped a lot and made me feel much better. I appreciate you taking the time to type that for me. I really meant a lot to me :-)

 

Angela


UCTD Plaquenil 400 mg and  Diclofenac 150 mg on really bad days Tylenol Arthritis.  and omega 3 with Moducare supplements

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